Have you ever had a cold that really kicked your butt? One that has left you so tired that your eyelids are heavy and you just want to sleep? But, you can’t lie down because you can’t breathe. Friggin’ congestion! You want something to drink but nothing tastes good.
You try to do your work and get on with your day, but you have about two hours and that is it. No more energy to think and work. No more energy to walk around. As my youngest used to say, “pillow, blankey, go night night.” What a great idea, but you can’t, too much to do. Besides, if you try to lie down, you can’t breathe. Friggin’ congestion.
In trying to do this blog, I could not find anything interesting to write. I am tired and I have no more mental energy and no real physical energy. “Pillow, blankey, go night night.” Nope, I have to finish my work. Besides, I can’t lie down … I can’t breathe. Friggin” congestion.
I was going to do mental energy versus physical energy and when they are spent what happens. Maybe, another day.
I found this word, “Enervated.” I was curious and had to find out more about it. I know what innervated means, but what does enervated mean? According to Thesaurus.com it means exhausted or worn out. That’s me, I am exhausted and worn out from this cold.
So, how many times this past week have you felt enervated?
What is zapping your energy? It doesn’t always have to be an illness that makes you feel enervated. It could be feeling like you have too much to do. It could be that you haven’t been sleeping well and you are physically tired. When we figure out what zaps our energy we can decide to do something about it or let it ride and always feel enervated. A cold will last 7 – 14 days and then it will be over. Not everything is self-limiting, but we really do have the power to set boundaries, conserve our energy and feel better.
Don’t manage your time, manage your energy for a better day. Think of the things that zap your energy as either energy zappers or energy vampires. Make a check-off sheet and see what are your true energy zappers or energy vampires.
Get a sheet of paper and across the top, label Energy zapper, Physical, Mental, Emotional
Draw lines from the top of the paper down to the bottom. Now, when something zaps you, write down what it is or who it is and then mark the appropriate box on Physical, Mental, Emotional box.
After about four days, you will have a pretty good idea of who and/or what is zapping your energy. Then you get to decide what to do to conserve your energy. Do you need help? Do you need to take a break? Do you need to be a better manager of your energy? No judgments allowed. You are on a fact-finding mission.
I look forward to hearing what your energy zappers are. If you find a person to be one of your energy zappers, please give them a code name or a false name.
The only person that you can change is you. You can change how you react or deal with a situation. You cannot change another person. The only person that will set boundaries for your own good, is you. When you are sick with a cold, you will have to take care of yourself ‘cause no one else will. Maybe, you will need to take a couple of days off from work AND from other responsibilities to let your body rest and heal.
Now, my mental ability is spent and I am not sure that the previous paragraph even makes sense. It did to me, at the time. I would go lie down, but, I can’t ‘cause I can’t breathe. Friggin’ congestion.
To all of our partners, spouses and friends and families:
Yes, we love you, we want the best for you and we want to help, if possible.
No, we do not know when you are just venting.
No, we do not know when you want suggestions or solutions nor when you don’t.
If you are anything like me, you get in to so much trouble by assuming others are asking for your help, ideas or solutions when really they are just venting and want to be heard. I am not opposed to listening and letting someone be heard, I need to know that is what you want. Have you ever noticed that the same people that want you to “just listen,” are also the same people that get pissed when you don’t offer solutions or help them when they are ranting and raving? It truly is a no-win situation. You get into trouble when you just listen and then you get in to trouble when you offer solutions or suggestions.
Let’s have an agreement for the “Ventor” and the “Ventee” aka the Listener. What will this agreement do? It will get everyone on the same page at the same time. It will improve your communication. Since communifriggin’cation is the key to everything, it might just stop the needless fighting, anger or hurt feelings.
I would suggest that you work on the agreement as soon as possible. Once the talking/venting begins it is too late. Each of you have unique ways that you deal with things. Your friends, partner, spouse, families do not deal with things the same way as you. If you only do one thing …make it clear that you just want to be heard, understood and supported OR you want ideas, help and possible solutions. Come up with two words that you can say and the other person understands. For example, you can say “rant” then the other person will know that you want to vent. If you say “help,” then they know to listen and then help you come up with possible solutions.
What happens if Vivi starts talking and Lindsay has no clue about what to do? Then Lindsay has to listen, understand, and empathize. No Fixing! No offering suggestions! I know that to just listen, understand and empathize is very hard to do. I always want to fix it or find a solution. I am a work in progress, but I am getting better and better at not offering unsolicited advice.
Rule #1 – The person being talked TO is “Lindsay the Listener” and the person doing the talking is “Vivi the Ventor.” Be quiet and listen for understanding, and NOT to reply.
Rule #2 – “Lindsay the Listener” will have to be on their toes ‘cause when “Vivi the Ventor” starts talking, they just start talking. You have no warning and are hardly ever told by Vivi that they “just want to vent.” As the current “Listener”, you must become the one that takes those two seconds to breathe and think before responding in any way, shape or form. Lest you become the one getting yelled at! If you have not been told if this is a venting session or a brainstorming session, then you must ask nicely.
Rule #3 – “Vivi the Ventor” has a responsibility to tell “Lindsay the Listener” what is going on and what is expected of them. No assuming allowed.
Rule #4 – “Vivi the Ventor” gets to feel however they feel.
Rule #5 – “Vivi the Ventor” and “Lindsay the Listener” both must agree to be respectful towards each other.
Rule #6 – Vivi may need to vent or discuss but Lindsay either cannot handle it at the moment or has something else that needs to be dealt with. Set a time to talk later.
Rule # 7 – Do not interrupt. You may ask for clarification when they are finished with their thoughts. Repeat back to them what you have heard to make sure you understand.
Rule # 8 – Be fully present. Do Not look at your phone or the TV.
Some people are natural born problem solvers and others need some time to figure out what course of action to take. What are the known challenges that are preventing you from moving forward? What are some barriers that arise once you begin moving forward? Identifying challenges and barriers are easy for some people and not so easy for others. We all have different perspectives and life experiences. Different is not bad or wrong, it is just different.
Are you able to listen for understanding or are you waiting for your turn to respond? Are you willing to be uncomfortable when they express their feelings/concerns? It is much easier to rush to problem solving than it is to deal with feelings and emotions that are being caused by the problem. Everyone gets to have their own feelings and everyone deserves to have their feelings validated. You may not agree with their feelings or emotions and that is fine, but they get to have them and feel them. Maybe all the other person needs to hear is “that sucks” or “I am sorry that you are having to deal with that.” Maybe, they just want to know that you have their back no matter what.
Learn what empathetic listening means. Empathy is about listening to the emotions and feelings that the other person is describing. Maybe you could ask, “How do you feel about this?” They probably want to feel supported by you. Understand where they are coming from and what they are feeling about what has happened.
Venting can have a dark side. If you find yourself venting about the same things over and over again then it is time to move on to problem solving. Are you venting for more than 3 minutes? If so, you are probably replaying the same thing over and over again while getting madder and madder. You are letting it become entrenched in your thoughts. That is not doing you any good and it may keep you ruminating about the issues. Ruminating keeps you stuck. If you cannot change anything about the problem then you must change how you view or deal with the problem. Start processing your possible solutions out-loud. Yes, get the thoughts out of your head. What if the same types of situations keep happening? Other than pissing you off, what else is behind it? Be open to the possibility that there is a lesson that you need to learn. Do you need to let it be, just as it is (also known as letting it go)? Let it be. What a novel idea. Be curious. No judgement (it is what it is). Just observe. You really can let your thoughts wonder and not attach any meaning to them. Just go, “huh, wonder what that is about?” and keep on keeping on. Not everything is meant to be figured out. I get it, I drive myself crazy too trying to figure out the meaning behind something. Most of the time, there is no meaning, there is no problem, it is just a thing. Don’t misunderstand, there are problems/issues that do need to be thought about, figured out and a plan of action developed …but, not everything.
If any of these apply to you then stop venting.
You have no intention of changing anything about the situation or the way you react to it
The person you are venting to is dealing with harder or more complicated situations
If you have absolutely nothing positive to say about anything, start working on finding gratitude for 3 things in your life every day.
You deny any personal responsibility for what is happening or how you are reacting
Everyone needs to vent every now and then. It is cathartic and helpful. It can help you to clear your mind so you can begin working on solutions to improve the situation. When we find ourselves venting we probably to need to get those strong emotions off of our chest and deal with that conflict in a healthy manner. Venting is not complaining. When you find yourself complaining, watch out? Complainers tend to focus on their own dissatisfaction, pain or uneasiness. Complainers only see it from their own point of view. Complainers see themselves as always right and others are wrong. Complainers become energy vampires that zap the listener.
Expressing your feelings is healthy. Complaining focuses on judging someone or something which does not help the complainer nor the listener. Which type of person do you want to be? Will you let others vent to you or is it always a one-way street? Some people take on a false sense of responsibility to fix things or help whenever others dump things on them. It is fine to be a helper, but not to the expense of your own peace of mind. Be wise. You cannot fix everyone or everything. Remember, you cannot make another person happy. Happiness is an inside job for each of us to handle on our own.
It would be so much easier if other people just knew what you needed and wanted and did it! No one can read your mind. No one can really understand what you are going through. Even if they have helped take care of a loved one of their own, their needs may have been completely different from your needs.
Communi-friggin’-cation! It is the key to everything. That is my own word for communication. Did you know that other folks communicate totally different from you, well, maybe it is the understanding that is different? You know what you need, inside of your head, but how do you communicate that need so that others will understand?
Are you one that thinks … Well, if they knew me…they would know what I need?
I have told them how tired I am and I need a break.
Well, if they could help me, I guess they would.
I talk about how hard it is, all the time. It has taken over my whole life.
No, I’m good, I can just handle it all.
Hey, I need you to be here on Saturday the 8th from 9 am until 6pm.
I need you to do the laundry, change the sheet and provide dinner on Sunday.
How many different styles of communication are there? Four major ones. Body language is another style, but that is for another day. We are talking about being verbal and asking for what you need or want. Wants are okay to ask for too.
Passive communicators go with the flow and are sometimes seen as wallflowers. No muss, no fuss. Sometimes they may be unaware of their thoughts or feelings, but more than likely they ignore their own feelings, wants and even their thoughts. They may seem to be easygoing, but underneath anxiety rules. They fear disapproval.
Passive communicators bottle things up. They hardly ever fight and usually cede everything. They stuff and they stuff their feelings and wants. You can stuff things for so long, but they will eventually bubble to the surface. Resentment, here I come!
Aggressive communicators dominate the conversations and state their opinions often overriding others’ opinions. They use direct eye contact, leaning forward, staring at you and moving towards you sometimes. They are very poor listeners and use a harsh tone, even if they don’t mean to be using a harsh tone.
Aggressive communicators are not quiet and yes, they are the ones that yell. They almost never back down. Your feelings will not be considered. Think more of a “win” type personality and not the “win-win” type.
A passive-aggressive communicator will confuse the hell out of you. Why? Because they cannot get all of their thoughts, and meanings outside of their heads in a cohesive manner or in a way that makes sense to others. They may be easily frustrated. They can become quite irritable and resentful. They will use sarcasm, talk to another person instead of the person that they need to be talking to. They will criticize others. I don’t get this one, but I have seen it happen. They show oppositional behavior. They will be the one that states, “I will help.” They will help and they will Complain the Whole Time. These folks are angry and their words do not match their body language. Gritting their teeth, making their hands into a fist all the while either being indifferent or smiling.
Passive-aggressive communicators are angry and they know that they are angry, but will deny that they are angry or that anything is wrong. Sarcastic barbs coming your way or maybe you will get the silent treatment.
They silently seethe and the other person has no idea what in the world is wrong.
An assertive communicator is confident. They are open to discussions and clarifying whatever may be unclear or confusing without being an ass. They are usually calm and will state what they want or need without imposing their requests on others. This type will look for a consensus, if possible. They usually listen and seem to care about others. You may have healthy and loud discussions but it does not feel like you are having an argument. They will share their thoughts, opinions and how they feel about something. They are open to you doing the same. Not only are they able to listen, they are able to hear.
What communication style to you have? What communication style do others in your life have? Can you see how things get all messed up when everyone is talking and no one is listening or hearing?
We have all heard it before, seek to understand first. Understand where the other person is coming from, try to put yourself in their shoes. You may not be able to fully, but try as best you can. We all have our own peculiar ways. We are different people with different experiences and we look at things differently. It isn’t wrong, it is just different. Search for common ground. What can you agree on? What is best for the care receiver? What is best for all involved as care givers? Each of us have strengths and each of us have things we don’t do very well.
Let your empathy and compassion for others help you in moving towards being an assertive communicator. A good sense of humor helps too.
What strengths help you become a better caregiver?
Resilience – The ability to withstand or recover quickly from difficult conditions; I can negotiate for what I need and navigate systems.
Patience – The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Flexibility – Ready and able to change so as to adapt to different circumstances; accept what is happening in the moment.
Compassion – The ability to translate empathic feelings into action (desire to alleviate suffering).
Optimism – Expect a favorable or positive outcome.
Confidence – Sure of one’s self and one’s abilities.
Organization – Methodical and efficient in arrangement or function.
Ability to Laugh – To easily see and appreciate the humor in the situation.
Use these to rate yourself on the above strengths:
1 – Always
2 – Sometimes
3 – Hardly ever or Never
Be honest and help yourself to know what you are good at and what you are not so good at… Hopefully, you will find that others have different strengths than you and will be a good helper.
To identify and acknowledge your personal caregiver strengths, set aside a few minutes for personal reflection. Ask yourself the following questions:
What gives me energy?
What am I good at? What do I do best? What do I do well?
What am I naturally good at? What comes naturally to me?
What are my best character traits?
What things do I look forward to doing?
When faced with challenges or adversity, what strengths do I bring to these challenges?
What do I handle well?
When you ask for things, be specific. Have a list at the ready. You may need things done at your house instead of at the care receiver’s house. Be as flexible as you can. You must agree to a day and time or it will not get done. Never a “whenever” or a “sometime next week.” Pick a day and time, negotiate for another day and time, if necessary. Keep a running list of things that need to be handled. Heck, place it on the refrigerator for folks to sign-up.
Headings for the list include: What action or Task, Where (care receiver’s house or care giver’s house), What day, Alternate day, Who will handle this
You will have to be direct. Not an ass, but state what your Mom/Dad and/or you need their help. Are you willing to step-up, pitch-in and help? If they say yes, then pull out the ready-made list and get to work. If it is a task that takes time and they do not have time, then by all means suggest a less time-consuming task or request a specific amount of money (be fair and reasonable) to hire out the task. If that doesn’t work then ask them what they can contribute and shut your mouth until they begin figuring out things, Yes, it will be uncomfortable, but just be still and quiet. Be open to brainstorming sessions. Try to make your “ask” into statements. For example, instead of saying, “Can you do some things for me?” state that “I need XYZ from the store today.” “I need you to provide dinner on Friday.”
What if you ask and get told “no” to your direct request? You may even get brushed off or told off, where do you go from there? You still need back-up and help. It is going to suck, but you will move forward as if you are an only child. You may need to hire outside help, ideally with the care receiver’s money.
I have seen a family of 4 siblings work it out to care for their aging parents at separate times. They all stepped up and did whatever was needed. They were all professionals and very busy with their careers, but they made their parents the priority. They communicated, worked together, had a list and each of them used their strengths to the fullest. Their parents we never alone.
I have also seen a family with 3 siblings leave it all to one sister. No help, no money, just bitching and “trying” to run things. It was horrible. That one sister realized she would have to handle her mom on her own. She did and her mom was well cared for. It did take some of the sisters’ own money, to help with outside care, but they managed and she had a good experience with her mom for the time her mom had left. She also told me that she had no regrets and that her conscious was clear. She is civil to her siblings, but not really much of a relationship with them now. Of course, it wasn’t much of a relationship before either.
Maybe you will have to say your piece to those that will not contribute in order to let go of your anger or resentment at them. Do let go of your anger, you don’t have the time or energy for it.
There may come a time when you have to say “No” to caregiving.
You may find that you must set limits on caregiving responsibilities. You are exhausted, overwhelmed and your own health is suffering. It most often happens to those that do not take care of themselves during the care giving process. You do count. You do matter. Add your needs in to the mix.
What does saying “no” mean to you? Could it mean that you leave the loved one to fend for himself?
Maybe it means that you are tired, isolated and depressed and you have to stop, possibly “no” means that you need to take a breather and you realize that some things will have to change if you are going to proceed and help as a care giver. Boundaries is not a dirty word. Emotional limits are reached quickly when either a crisis happens or you have taken no breaks.
Practice your “I” statements to work on your boundaries.
“I can no longer drive you to all of your medical appointments due to my work schedule and my limited time off. I know this will be a change for you. I suggest we look into other transportation options such as the Busy Bee Medical Transport Service.”
“Mother, I am unable to continue with the responsibility of cleaning the house weekly. I want to spend my time with you on other matters. I know it’s hard to let newcomers help, but I think it is time to hire a homemaker service you would be comfortable with.”
“Dad, I can no longer assist you down the outside stairs. I am worried about your safety and mine. I believe we need to build a ramp for easier access to your home. I have found a carpenter who has reasonable rates for construction.”
In each of the above statements, there is a presentation of what the speaker cannot continue to do, an acknowledgement that the change will have a consequence for the elder and a suggested solution. No attempt is made to make the elder feel guilty about the effort the caregiver is expending or the caregiver’s stress level. It is understood the elder knows the caregiver is working hard.
Setting the boundary is the caregiver’s responsibility. Deborah Colgan, MA, M.Ed., NCC
You can state what you need. You can be direct. You can set boundaries.
You worked and you thought and you worked some more. By golly, you have a plan. It is a good plan. You are so proud (and relieved). Now, it is time to work the plan. I mean you are so excited and you just know that this is the right plan and the “right way” to do this thing. Granted, it was all in your head of how it would all play out, but still, it worked.
Then reality set in. A few fits and starts at the beginning, but you were still on your way. And then, out of nowhere whoa, the brakes get slammed on … hard. What the hell? Why all this resistance? Why is this not working? Why the melt downs? All of these things are running through your mind. You are replaying what happened. You are confused. This should have worked. I saw it work in my mind. We Are Trying This Again!
You do and the brakes get slammed on again. Hmmm, are you ready to look at what did not work? Are you ready to ask others why this did not work or are you still the Lone Ranger? Are you ready to accept that it might not have been a good plan? If you aren’t, then look up the definition of insanity, you know, the one that states that you keep doing the same things over and over again, in the same way and you expect different results,
This scenario plays over and over again in all of our lives. At work, at home and with loved ones that we are helping. Think back to your own experiences at work when you had the most brilliant idea for a way to handle an issue. I mean it was win-win for everyone. You had everything in place and began implementing the plan. It was okay and there were a few folks that balked, but you were determined to push on. Soon, the plan was not working as you had envisioned and the situation became more unstable and somehow it was not a win-win for everyone. Dang it! What happened? Maybe, you did not have buy-in from the start from the others that were going to be impacted by the plan. Maybe, the plan was not fleshed out enough for consistent implementation? Maybe, you had one or two people that did not like the plan because they were not consulted on something that would impact them? What do you do? Do you scrap the plan and start over? Do you look at what worked well and make adjustments on what did not work well? Do you bulldoze over others objections? Do you seek input from others who will be impacted with the plan?
What a pickle! Can you see how these things happen in caregiving or helping others? I can. I have a plan and I think it is the greatest plan to help all involved. But, I did not even talk to all involved to see what they thought about the plan. I only thought about what I thought would work the best. My own perspectives, my own wants and my own…everything. I did not realize that at the time, I just thought that I knew best. I did not know best. How can I make a plan for others and not include their wants, needs or ideas?
I felt that if I was handling things, then I get to decide everything. That did not work at all. You talk about stress, strife, fighting, anger, even a lack of trust. I only thought that I knew best. I didn’t know jack. I had to realize that we needed to work together to make a plan that would work for all of us. All Of Us! Not just the care receiver, but the care giver, too. It was not easy to realize that I did not have all of the answers. I had the knowledge and I had the contacts, but I did not have my mom or dad’s perspective. Don’t make the same mistakes that I made. It was much easier than I had anticipated. It was so much easier once I knew what they needed and wanted help with. It was so much easier to work around my schedule when I shared my schedule with them. I am all about less stress and more effective ways of doing things. I am a life long learner and I like learn new things. One of the new things that I learned is that it is okay to be a recovering perfectionist. I learned that progress beats perfection every time. So much less stress too. Perfection keeps us stuck. We don’t have time to feel or be stuck.
What if you could provide better care AND get your life back? Sometimes, you can do it on your own and sometimes you will need my services.
When making a plan involve all the people that will be affected by the plan. (There may come a time in a dementia patient that they can no longer participate, but while they can, let them participate.)
List the issue
List who may be impacted by this issue
Does this issue need to be done/handled at a certain time?
Who can best handle this issue?
If this does not work, what can be tried next?
Brainstorm – write everything down (pare down later)
Reevaluate and update, if needed
Come to a consensus or an agreement
Implement the plan
The above tips will help to keep you on track. If you are a person that goes to worst case scenarios then you must act as if the worst has happened and make a plan for what you will do, you have to move past the worst-case scenario into what you will do next.
Remember, you only have so much brain energy to use on difficult situations every day. It is about two and a half hours. If it is important enough to make a plan then it is important enough to be at your best when your make the plan. Sleep, eat, and hydrate.
One thing that I want you to realize is that there will be important and urgent things and there will be not important and not urgent things. Don’t let yourself waste your time, efforts and energy on the things that are not important and nor urgent.
Handle only three things at a time, that is all you will be able to handle well anyway.
Have you ever wondered if the medications that you are taking or someone that you love is taking are helping you, hurting you or even working at all? Have you ever wondered if you are having an unexpected reaction or side effect to your meds?
What is pharmacogenomics?
Pharmacogenomics is the study of how genes affect a person’s response to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to a person’s genetic makeup.
This definition is from the U.S. National Library of Medicine
Basically, your genes affect how and if certain medications are metabolized in your body. And why is that important? Because you need a medication to be therapeutic (to do its job well). Some drugs, called prodrugs, are inactive when administered (taken) and then they are metabolized into the active form to provide benefits. What happens if you cannot metabolize that medication into its active form? It will be like taking water. It won’t do anything because your body cannot change it into its active form. What if you take a medication and your body rapidly metabolizes it too quickly? You will not get the benefits of an Effective therapeutic dose. You are burning through it too quickly. What happens if you metabolize the medication very slowly? It can build up inside your body and cause more and more problems along with more intense side effects. Most medications are metabolized in the liver and excreted through the kidneys.
Metabolism, liver, kidneys, liver enzymes, excretion rates, inactive and active metabolites, metabolism rates, phases of metabolism, blood flow, changes in liver volume, etc. all of these things come in to play. What I want you to know is that you can find out how you metabolize certain medications and you and your doctor can decide what medications are best for you and your particular needs. You can also find out if you need more or less of a certain medication. Do the test once and use the information the rest of your life.
What are some of the benefits to having this test?
Helps your doctor find the medications that may work best for you
Helps you to know which medications to avoid
Helps you to know which medications dosage may need to be increased or decreased
Severe drug reactions can be reduced or eliminated
Stops the trial-and-error method that usually takes months to see if it helps or not
May help decrease opioid dependency
May increase pain relief
Bothersome side effects may be decreased or avoided
Do it once and use the information the rest of your life
Who can truly benefit from this test?
If you have been diagnosed with:
Lipid disorders (high cholesterol)
Check-out the Medications that are impacted by your genes.
Go about midway down the page and click on the blue bar that has the RightMed® Medication List
**Remember, some physicians prescribe medications for off-label use, which means they are using it for something other than what the medication is approved to treat. **
My own experience with pain medications has led me to encourage others to take this test. I had arthroscopic shoulder surgery in the early 1990’s. They sent me home with Percocet® (Oxycodone and acetaminophen) and Phenergan® (promethazine). I get home, ice and take my medications. I am out like a light in about 45 minutes. Now, I had never had any type of pain medications before and I don’t remember having any anti-nausea medications as an adult. After two hours, I am apparently whining in my sleep. I am awakened and I am hurting, but I am so sleepy. The promethazine is kicking my ass and I cannot wake up. The pain is fairly intense. Over the next 24 hours I am taking my pain medications as directed and only taking half of the promethazine. I do believe that the only thing that was helping me was being knocked out by the promethazine. I called my doctor and told him that the Percocet® was not working. He told me that was the strongest that they have. I know that’s a lie, I am a pharmacist. I understand that doctors are concerned about drug seekers, but hell, I just had surgery the previous day. He called in Tylenol#3 (acetaminophen and codeine). I took that and guess what? It did not work either. I knew that I was screwed and would have to deal with this on my own. I iced, I breathed deeply and I took a half a tab of promethazine every 8 hours and Ibuprofen 800mg every four hours. I am thinking that I never ever want another surgery in my lifetime! After about 5 days, I could stand it. Then came physical therapy. You do what you have to do. I cannot imagine what I would have gone through if I had anything other than an arthroscopic surgery.
As a pharmacist I knew that not every medication worked for every person. We all knew that; we just did not know why. We knew it had to be something inside our body make-up, but what? We knew that when Ultram® (tramadol) came out that it worked for some people and it did not work for others. I believed people when they told me that certain medications were not working for them, and I would have them ask their doctor to try X, Y, or Z. Just because something is “supposed” to work does not mean that it does work for all people.
Funny how when we don’t really have the answers, that we tend Not to believe it could be happening. We doubt the person and not the medication. Well, no more! Now we know that some medications are impacted by our genes. I now know that I cannot metabolize Percocet®. My body cannot metabolize Tylenol#3® nor can it metabolize tramadol. They are pro-drugs which means they need to be converted into the active form inside the body in order to work. So, I was taking sugar pills for my body. I have a genetic “defect” for CYP-2D6. But, by God, I now know what will work for me and the dosage that I will need. I have the tests to prove it for all the skeptical physician’s worried about drug seekers. My primary care physician has a copy of it in my records and now I tell them to call him for the results, if they want.
So, if you are going to have a planned surgery and you don’t know what pain meds work for you, it might be worth it to have this test. I know that it is expensive and it is going up after the first of the year (in 2022). Only you can decide what is of value to you. It was valuable information for me and I can use it the rest of my life. No more waiting and hoping. No more wondering for months on end. No more wasting money and time.
Have you been diagnosed with depression? Have you been started on a medication? What did your doctor and pharmacist tell you? Hopefully, they told you to take it at the same time each day, do not miss doses and give it 3 months. You do. It doesn’t seem to have helped very much, maybe a little. You return to your doctor and he or she takes you off of that medication and you begin again with another medication for 3 months. Nope, this one is not helping and you are now dealing with sexual arousal dysfunction. You return a third time, maybe or you stop going back and just suffer. You are 6 months down the road with no real results to speak of. Six months of your life that you will never get back. You tell me, what is that worth to you and your family?
Are you a chronic pain patient that want the best quality of life possible? Let’s find the medications that will work for you and not wipe you out. Let’s find the right combination to help you to get back to living. I know that you will not be pain free, but you have every right to expect it to be manageable.
Everyone deserves the best quality of life possible for them.
Do it now, before the price goes up in January 2022.
Most HSA’s and Flexible Spending plans allow coverage for this in-home test.
The 5 different types of metabolizer status are described below.
A person who is a “Poor Metabolizer” for a medicine will process that medicine very slowly. The medicine might not work if it is processed slowly, or it could put them at risk for side-effects.
A person who is an “Intermediate Metabolizer” for a medicine will process that drug slowly, but not as slowly as a poor metabolizer. This means that the normal amount (or dosage) of certain medicines may not work for them, or may cause side-effects.
A “Normal Metabolizer” for a medicine usually benefits from the normal amount (or dosage) of the medicine. This means the metabolizer status does not put them at increased risk for side-effects.
A person who is a “Rapid Metabolizer” or “Ultrarapid Metabolizer” for a medicine can process the medicine very quickly. A medicine might not work if it is processed very quickly, or it could put the person at risk for side-effects.
Right, Wrong, Good, Bad – those are the words we use to describe our decision-making choices. What makes a decision right or wrong? What makes a decision good or bad? Yeah, I know, it’s like porn. You can’t describe it, but you’ll know it when you see it.
A decision that is right for you may be wrong for me. A decision that is good for me may be bad for you. Hang on, here we go… Your perceptions and life experiences are your guides. Your gut feelings are tied in to past experiences and results. Sure, we all like to think that our decisions are made with great care and a lot of thought. Wait, I need to throw my bullshit flag.
Hear me out before you take your toys and go home. All of us have unknown biases. All of us have tunnel vision on certain issues. All of us hate the idea of even making a “wrong” decision. It is one thing to make a wrong decision for ourselves, but let that decision affect other people that we love and that piles on the stress, pressure and worry. I never want to hurt the ones that I love. I always want to make the best decisions possible. I especially want to make the right decision when it affects those that I love.
How can we make the best decision possible when we don’t recognize our biases? How can we make a good decision when we really don’t know what good resources are? To me a good resource is a trusted resource. A trusted resource often educates. A trusted resource is NOT an advertisement. Use the CRAAP test. See the bottom of the article for a worksheet.
Facts are Facts. You don’t have to like it. Truth on the other hand takes in to consideration you own views, beliefs and ideas about a subject and sometimes you throw facts in the mix. Unknow biases. Question why you believe what you believe. Be skeptical. Can you accept what you have thought or believed most of your life could be wrong? How did that last word “wrong” make you feel? We do not want to be “wrong” ever! Change the word “wrong” to incorrect and see how that makes you feel. Can you accept that your friends and families’ beliefs and opinions may be incorrect? I am able to accept that I am incorrect. I am not inclined to believe that I am wrong. I get defensive if I am “wrong.” I can’t stand to be wrong! That is why I will do my research from trusted sources. I may not like what I have learned, but at least I know the facts and I can then figure out what will work best for me and my loved ones. Find three trusted resources and read the information using the CRAAP test information.
Be open to learning something new. Be curious. Let yourself ponder and think. We try to control the outcomes with our decision-making. Have you heard the phrase, “trust the process?” Why do people tell us that? Because we cannot control the outcome. We can only do our best. Sometimes, it is making a decision with the information that we have, right now. We may need to change our decision or update as we learn new information. That is okay. When we know better, we do better.
What happens we are faced with NO good choices? What do we do? How can we decide?
We make the decision that we will regret the least.
Get rid of the “should.” Every time that you say or even think the word “should.” Stop and change that word to “Want.” What do I want? How do I want things to go? What do I really want down the road? Take time to think. Think through your options. Brainstorm and don’t dismiss anything, right now. You can pare down later. Are there compromises or alternatives?
What are your values, wants and needs?
Talk it through with a good listener. Tell them you are talking and you just want them to listen.
Maybe you need someone else’s perspective (maybe someone who has been in a similar situation).
Test out the decision in your mind. Go all the way through. Remember, you cannot control the outcome. How will this affect me in the short=term, in the long-run?
Doing something always beats doing nothing.
Listen to your gut. Your intuition is important.
There is not right or wrong decision, only what is best for you and your family.
When all of the choices suck, which one will you regret the least?
Choice overload will cause you to not make a choice. Paralysis by analysis is a real thing. Too much information will keep you on the indecision wheel. Find 3 choices by doing your research with trusted resources. Realize that decision fatigue happens to all of us. Making tough decisions takes a lot of time and a whole lot of energy. You will second guess yourself. Go with what you know and not how you feel once you have made your decision. Accept that there will probably be trade-offs. Know what your values are. What is important to you.
Very few decisions can’t be changed or updated. Try to find a “both/ and” decision rather than an “either/or” decision.
Sometimes you will have to make a decision that you will regret the least. Be kind to yourself.
The CRAAP Test Worksheet
Use the following list to help you evaluate sources. Answer the questions as appropriate, and then rank each of the 5 parts from 1 to 10 (1 = unreliable, 10 = excellent). Add up the scores to give you an idea of whether you should you use the resource (and whether your teacher would want you to!).
Currency: the timeliness of the information………………………………………………………………………..
• When was the information published or posted?
• Has the information been revised or updated?
• Is the information current or out-of date for your topic?
• Are the links functional?
Relevance: the importance of the information for your needs…………………………………………….
• Does the information relate to your topic or answer your question?
• Who is the intended audience?
• Is the information at an appropriate level?
• Have you looked at a variety of sources before choosing this one?
• Would you be comfortable using this source for a research paper?
Authority: the source of the information……………………………………………………………………………
• Who is the author/publisher/source/sponsor?
• Are the author’s credentials or organizational affiliations given?
• What are the author’s credentials or organizational affiliations given?
• What are the author’s qualifications to write on the topic?
• Is there contact information, such as a publisher or e-mail address?
• Does the URL reveal anything about the author or source?
Accuracy: the reliability, truthfulness, and correctness of the content…………………………………………
• Where does the information come from?
• Is the information supported by evidence?
• Has the information been reviewed or refereed?
• Can you verify any of the information in another source?
• Does the language or tone seem biased and free of emotion?
• Are there spelling, grammar, or other typographical errors?
Purpose: the reason the information exists……………………………………………………………
• What is the purpose of the information?
• Do the authors/sponsors make their intentions or purpose clear?
• Is the information fact? opinion? propaganda?
• Does the point of view appear objective and impartial?
• Are there political, ideological, cultural, religious, institutional, or personal biases?
It started out as a few hours a week. An afternoon here. An evening there. A Saturday or two. You handled whatever arose. No big deal. You love them and it was manageable. It happened so slowly that you did not even realize that you became a caregiver. You were helping out. Funny how when we are in the big middle of stuff that we do not realize how long it has been nor do we have any idea how we got “here.”
“Here.” Hmmm, where is your “here?” Think about it for a few minutes. How long ago did it start? What did your life look like then? What does your life look like now? How many different things are you juggling? Partner, spouse, kids, work, career, friends, community activities, church functions, or even your own health care needs? How many things and people have you neglected?
Are you a caregiver that feels you must always be on call? Are you a person that feels you must always be reachable or be close, just-in-case? It isn’t just caregivers that feel that way. I have found that if you are or feel you are responsible for someone or something you think that you “need” to be available and ready at all times. You must be Superwoman. You must be Superman.
When you feel that way and act that way you have no freedom. You have no down time. You have no “me time.” You probably don’t have much family time either. It sucks. You want to rest, relax and recharge. You want to turn off your brain and just chill. You don’t want to be tied to your cellphone. You want to go out to eat with your family. You want to enjoy sporting events, plays and church. You want to enjoy those around you. But, how can you do all of that? How can you do that and be “on call?”
You can handle most anything, for a while. It is the continued drain on your time and energy that will wear you out. Have you figured out how to rest, relax and recharge without taking a break, yet?
You cannot rest, relax and recharge without taking a break. A mental break and a physical break are required. You will feel guilty. Accept that you will feel guilty. Don’t ask for permission from the person you are caring for. Take a break BEFORE you are so worn out that it takes you a week to recover. Even four to six hours once or twice a week is better than nothing. It would be best if you could take one or two days off every week.
Can other family members help? They probably will if you tell them a day and time. Do not leave it up to them to decide a day and time because they won’t. It is not mean or ugly to have a day or time picked out. If they truly cannot, go on to the next person. Keep going. For some, it may be easier to have a set time or day every week. You may have to hire outside help. I get it, it isn’t cheap. What is your physical and mental health worth? You can always check-in on the care giver/companion.
If your loved one has a dementia, like Alzheimer’s disease you may have to be subtle with adding in-home help. You may need to use other words and phrases. Do not use “Sitter.” You may not be able to use the word “caregiver.” You may have to use “your helper around the house, or help with meal prep, even help with light housekeeping.”
Other emotions may pop up too, so don’t be surprised when shame or fear show up. If you are feeling resentment, anger or burnout you NEED a break NOW. When your “give a damn doesn’t give a damn anymore,” it is past time for time away. Caregiver fatigue and burnout are very real and they can lead to your own set of illnesses. I want you to take care of yourself. Breaks and time away help you to be an even better caregiver.
However, if you notice these signs of caregiver burnout, it’s time to take your health seriously and give yourself a well-deserved break:
Feeling “trapped” or hopeless
Losing patience or compassion for your loved one
Overreacting to small accidents
Resenting or neglecting your loved one
Withdrawing from your personal hobbies and friendships
Oversleeping or not sleeping enough
Overeating, not eating enough, or eating a lot of high-sugar foods
Having health problems
Abusing drugs or alcohol
Having thoughts of suicide
You are impatient with your care receiver
You are making mistakes (medications, appointments, etc.)
You feel lonely
You have snapped at your care receiver
You feel exhausted most of the time
You are bored
You are experiencing memory problems
You are experiencing signs and symptoms of depression
Your own relationships are declining
Design a plan that works for you and your family. What are the needs and who can fulfill them? Take some time to think.
What do you need? Be specific. Three hours off twice a week? 24 hours completely away? A regular day or night off to be with your spouse? A night off to be with your friends?
What does your loved one need? Meals prepared? Laundry? Shopping? Personal care? Haircut? Daily walks? Help with medications? Companionship? Light housekeeping? Taken to doctor appointments? Yardwork?
Who can pitch-in? Tell everyone what is needed. Have a sign-up sheet. Have a day in mind, but try to be flexible, Maye they can’t help on Wednesday, but they can help on Thursday.
Sometimes, you may have to have a family meeting or as I like to call them. “A come to Jesus meeting.” If you find some family members unwilling or unable to help…help them write a check for respite care or handle some of your things at your house that needs to be taken care of while you are away from your own home.
Look online for Respite care in your area.
Look at in-home care, non-medical for companion care.
Check out your local area’s Office on Aging.
Search for Adult daycare facilities in your area.
What are the benefits for taking a break from caregiving?
It can prevent you from having an emotional breakdown.
It provides you time to take care of your own personal business.
Having other people ready to take over should you become ill or have to be away.
It may provide you with a different perspective.
You are better able to make necessary decisions when you are clearer headed.
You will decrease your stress, which will improve your own health.
You get to re-engage with your own spouse, partner, children or friends.
You will be a better caregiver and manager for your loved one.
What do you do when you have multiple “To do” lists or your “To do” list has a “to do list?’ Do you get laser focused and start at the top? Do you put it away? Do you do the most important thing first or do you do the one that takes the least amount of time first?
What criteria do you use to make decisions at work? What about, at home with your family? What about with your friends? Hang on… your head may begin to hurt in a little while. What criteria or values do we use to make decisions? What about our intuition and gut instinct?
The average adult makes about 35,000 decisions every day or so we are led to believe. I don’t think there have been any studies on that but the point is…we make a lot of decisions every day and we get tired. I did find one study that was documented by Cornell University that we make about 226 decisions every day about food. The biggest decision about food is where to go eat. Talk about back and forth.
At first I was just going to help pare down the number of decisions made per day, but, no, it always gets more complicated. I did find some information to make it easier on you to make decisions. Think about what is going on inside your mind when you are thinking about a decision that needs to be made. What are all the parameters or guidelines must you deal with? How do you decide what is the most important decision to make, right now? Hell, how many decisions do you have to consciously make on this one problem?
Habits are good for us. They help us to save brain function energy. How many things do you do on automatic? What have you put into your morning routine? You no longer have to think about it, you just do it. It does not use your brain energy. By the way, you only have so much focused brain energy per day. I believe it is about 3 hours. Remember when you were learning to ride a bicycle? You had to listen to instructions, process them in your mind, think about each and every step, in order, to pedal and keep your balance. After crashing a few times, you learned to keep peddling and turn before you went off the side of the road and down the bank. You kept practicing and you kept getting better and better. Soon, you could jump on that bike and ride for hours. You got to the point that you just knew what to do and how to do it. You no longer had to concentrate, think, remember and do the steps in order.
Driving to work. It took a while, but you learned the route. Uh oh, the road you usually use is blocked off. Now what are you going to do? Some of you are going to cuss. Some of you are going to use the alternate route that you already know, because, you know that you need to know 3 different ways to get somewhere. Others are going to have to use their phones or other travel route providers. How tight does your jaw get when you don’t know where you are and you are not sure that you can find your building going the back roads. How much time and brain energy does that one little mess up cause you? Probably about 20 minutes plus a cortisol dump that you will have to contend with and calm down from in order to actually focus at work. That is probably another 30 to 40 minutes. You cannot think rationally right after a cortisol dump, it is physiologically impossible. Now you are down to 2 hours of focused energy for the day. Hmm.
It is always the “new things” that pop up that cause the problems. The new things to learn that take time, effort and a lot of energy. We look for ways to decrease our energy expenditure and having habits or routines help us out with that. Issues to decide upon that we have never had to think about before. Those issues take time, effort and energy. Don’t forget about everything else that is running round in your mind that you “need” to deal with too. If you can compartmentalize, maybe you can give yourself enough of a break that you can deal with one situation at a time. There again, how do you decide what to tackle first out of that list of 10 things to be done?
What is important to you? What are your core values? The principles that you use to live your life. Your own judgement of what is important in your own life. Do you have a standard of behavior that you expect out of yourself? What would your life look like and how much easier would your decision making be if you truly searched for your personal core values and used them in your decision making? You could make better decisions and save brain energy. Win-win!
How do you find what your core values are? It is a process and you will be glad that you did the process. Once you know your 10 core values you will always be able to make easier decisions that line up with your belief system. When you make decisions that line up with your belief system you feel more at ease, more comfortable and even relaxed.
How to Identify Your Values – Ask yourself the following questions
When were the times that you were the happiest?
What makes me happy?
What is the common theme or thread behind the last three positive decisions you made? What gives you true happiness in your life? What were you doing?
What makes me feel proud?
Why were you proud? An achievement, met a goal, exceeded expectations
What have I done that makes me feel happy and satisfied with the outcome?
A personal success usually relates to making a good decision. Maybe your decision provided great results for someone else.
When was the last time that I felt fulfilled or complete?
When you satisfy your values, a sense of fulfillment or a feeling of completeness usually follows.
From the list below or from your own list, choose your top 10 values, in no particular order. Then you are going place them in order of importance and maybe even get rid of a few. Sometimes we do have situational ethics, (an “it depends” kind of issue) and there are some things that are deal breakers. You may find you have two or three absolutes or maybe five or six. If you have trouble putting the values in order of importance, look at them two at a time and ask yourself, “If I could satisfy only one of these values, which one would I choose?”
It may be hard to narrow down your list, but do so for your own good mental health. Some of the values listed can be placed under an umbrella term also on the list.
What happens if you have conflicting values? Which value is more important to you at this time? What might things look like if you could honor both values?
Your values are formed by your thoughts. You have been thinking, adjusting and growing in your thoughts since you were born. A word of caution, be sure they are your own thoughts and values and not what you have been programmed. We all have unknown biases. We have all grown up accepting things and now that we can think for ourselves, we are supposed to question what we were told or taught and we are supposed to figure out “stuff.”
Are the decisions that you make in line with your own values? When a choice makes you feel uneasy, be still and think about why you are feeling that way. What is you gut telling you? Intuition (gut knowing) is as important as facts and good data information. That is an article for another day.
You want to know what is important to you before a crisis hits. Have you gone against you values or principles before? How did that work out? How did you feel? Prioritize your top 3 most important values.
Do these values make you feel good about yourself?
Are you proud of the top 3 values you have chosen?
Do these values represent things you would support even if it puts you in the minority?
Making a decision may not be easy, but it will be easier.
I like the Eisenhower Matrix (box) to help folks to figure out what is urgent and important. Urgent and unimportant. Not urgent but important. Not urgent and not important. Using this box can make you life easier. I would suggest that you use the box a few times to get used to it and then you will probably be able to do it in your head.
Work from a “To do” list with only 3 things on it. That is all you will have time to focus on anyway.
Consider decision making criteria
Your effort and energy required
Your acceptable risk levels
If you are having a rough time or do not feel well, it is fine to wait on an important decision. My hope for you is that you prepare a plan or make most decisions ahead of a crisis. If you need some help with this, let’s talk and see if I may be of service to you or your loved one.
Do you believe that failure is an event or one that has failed?
Do you believe that you are a failure? You are not! You may have failed at something and felt the shame and embarrassment of that event, but you are not a failure. That is really the crux of it all isn’t it… shame and embarrassment.
I wasn’t there for my mom, when she needed me, and she fell, laying on the floor for three hours until she was found and helped by my uncle. The phrase “when she needed me” goes straight to the heart and the mind starts racing with all these thoughts. The “I shoulda.” “It would not have happened,” “I coulda.”
After this incident with my mom, I beat myself up for a long time (years, actually). The reality is that I was not supposed to be there that day. But in my mind, if she needed me for anything then I was supposed to be there. It did not have to be logical; this was my mama and I love her dearly and will do anything and everything that I can to help her.
What comes to mind for you when you think about a fear of failure? Now, go back and think about it logically and realistically. Was it an accident? Was it something that you did or did not do? Don’t even go to the “I should have predicted” place. Do you realize that it was an event and not you?
Go back and replay it in your mind and if you can make changes for the future, then go ahead and make changes.
Have you wondered what causes fear of failure? It is usually your own thoughts and feelings.
You worry about what other people will think of you
You worry that some people may not like you anymore
You worry that you are not smart enough or capable enough
You worry that you will never reach your goals
You worry about disappointing people whose opinion matter to you
You are reluctant to try new things
Your perfectionistic tendencies arise
You will be embarrassed
You will be humiliated
You feel shame
All of these things come up when we have a fear of failure. We never ever want to feel shame, embarrassment or humiliation. We are our own worst critics. We catastrophize.
Failing means we are trying to do better. To get better. To be better. Yes, we will mess up sometimes, but we are moving forward and trying again. We learn what did work and what did not work. Failure is a chance to learn.
We learn that baseball players that bat 0.300 are stars. That means that seven out of ten times they strike out.
Albert Einstein did not start reading until he was seven.
Dr. Seuss’ first book was rejected 27 times.
Vincent Van Goh only sold one painting in his lifetime.
Katy Perry’s first album sold 200 copies.
Oprah Winfrey was fired from her first job for being unfit for television.
Vera Wang failed to make the 1968 Olympic figure skating team.
Thomas Edison’s teachers told him he was, “too stupid to learn anything.”
Steve Jobs was fired from his own company.
All of these people, and many more, kept trying. They kept learning. They kept moving forward.
“Fear of failure is the emotional, cognitive, and behavioral reaction to the negative consequences you anticipate for failing to achieve a goal. It is the intense worry, the negative thinking and the reluctance to take action you experience when you imagine all the horrible things that could happen if you failed to achieve a goal.” Theo Tsaousides, PhD.
There are things you can do if you have a fear of failure.
Acknowledge that fear of failure makes you feel fear and shame. Explore those feelings, if it is safe to do so. What are those feelings trying to tell you? Remember, all feelings are trying to keep us safe. Is it your 5-year-old self that is trying to be in charge?
Anxiety is not all bad. We need some anxiety to get us excited, or to move forward and to be aware of danger.
Prepare, practice, learn new things
Identify what you can control and focus on that
Learn how to relax, take a break and recharge
Go through the possible outcomes…all the way through
Learn to think more positively. We are hard wired to go to negative consequences.
Worst-case-scenario – it may really be a disaster and it may be a reason to fear failure…just know that this is a rare occurrence.
What are two small goals that you can set and do, right now?
Have a contingency plan, in case Plan A, B, or even C does not work out.
What negative self-talk do we say to ourselves when we mess up?
I have let my loved one down.
I have failed and now I am stuck.
I have failed and so I must not have what it takes to succeed.
I can’t learn new ways or new things.
I have royally screwed up and now everyone knows about it. I am so embarrassed.
Stop it! All you have to acknowledge is that you messed up and what you will do to fix it…if it can be fixed. Do better next time.
Maybe the shame and embarrassment is causing the fear of failure. We like to learn and try new things. We do love our spouse and families. Remember when your kids began to learn how to play sports? Take T-ball, for example. They are 5 years old. They have the uniform, the glove, the cleats, the hat and yet, they still cannot run to first base without being told where to run. They are in the outfield and they are looking up at the plane flying by or the train that is passing through. Don’t forget about the butterfly that just lit on the grass and now the whole outfield is over there squatting down and watching it. Fast forward 4 years and now they are 9 years old and in Little League. It is all serious now. The hits, the strikeouts, the runs, the wins and the losses.
What happened during those 4 years? They got older, they grew and they practiced. They learned. They are still learning. They are perfecting their swing and their ability to see the ball as it is pitched. They are learning to get that glove on the ground and squeeze that ball in the glove. They are getting better at knowing where to throw the ball. By the time they are 12 years old, they have the basics mastered and now those functions are muscle memory. They have to put in the time, they have to be coachable, they have to be willing to learn new ways and new things.
The same thing happens to us as adults. We learn, we grow, we mess up and we learn some more. I have had folks that were very good at their jobs try to be a care giver. They have even said, “I can manage my company” or “I can do this and that.” But, I cannot understand why I cannot manage my mom’s needs. I smile and nod. It just so happens that this medical stuff is not your area of expertise. The other things at your job you can do in your sleep, but not this. There is a huge learning curve. That is why I do what I do, to help families like yours.
I know what it feels like to have your pride hurt. I know what it feels like when your ego gets bruised and beat up. I know what it feels like to feel shame and embarrassment. It sucks! It is hard to learn some lessons. It is hard to realize that you are causing your own suffering by believing the untrue negative self-talk. It is hard to move forward when you keep beating yourself up. It is in the past and all we can do is to move forward and be better than we were yesterday.
I found this paragraph on shame and want to share it with you.
“Shame is a psychologically toxic emotion because instead of feeling bad about our actions (guilt) or our efforts (regret), shame makes us feel bad who we are. Shame gets to the core of our egos, our identities, our self-esteem, and our feelings of emotional well-being. The damaging nature of shame makes it urgent for those who have a fear of failure to avoid the psychological threats associated with failing by finding unconscious ways to mitigate the implications of a potential failure—for example, by buying unnecessary new clothes for a job interview instead of reading up on the company—which allows them to use the excuse, “I just didn’t have time to fully prepare.” “Guy Winch PhD
You will not fail, you cannot fail. It is too important to you. Keep adjusting. Keep trying. Seek help when you need help. Are you smart enough to know when you don’t know?
If you are a control freak, you may be a part of my tribe.
September 29, 2021
If you are anything like me, you handle it because that is what you do. See the problem, figure out the solution and handle the problem. That works great if it is just your problems you are handling. What happens when it is another person’s issue? Yeah, I know, I figure out a solution and handle the problem. It has gotten me in to a lot of trouble though. You would think that I would learn to not do anything unless asked. I am a work in progress. I am better than I was, but I have quite a way to go.
What makes us like that? Some of us have been this way since birth and it just seems natural to identify the issue or problem, find a workable solution and handle the issue or problem. If the solution does not work, then we try something else. We are problem solvers by nature. Where we get in to trouble is when we haven’t been asked to figure something out or to even help. My failure is in assuming that if you are sharing something with me, then you want my opinion or help. I have to tell people, that if you are venting, please let me know or I will be trying to “fix it.”
What I found out as an adult is that I am a control freak. I like order. I like to have a plan. I am perfectly fine with changing or updating a plan, but I have to have a plan, I do not do well with “flying by the seat of my pants.” I have perfectionistic tendencies, just add it to the list of things I am working on. Don’t worry, we will be getting to you and your tendencies very soon. When the control freak tries to take over, I have to stop and figure out what is driving me? Is it some kind of fear? Maybe, it is because everything will fall to pieces. If I don’t stay in control I might be seen as weak.
So, what makes you handle everything? Is it your nature or could it possibly be a few other things? What fears do you have?
A moderate amount of control is a good thing for all of us. The problems arise when we find ourselves forcing our will on other people or situations. Sometimes, we do not know we are doing that. Sometimes, we don’t want to be still and think about what is really going on inside our own heads. Other times, we are in a crisis of some sort and are reacting. If you have ever read about the underlying factors of needing to be in control… you probably thought “that is not me.” Some of it may not be you, but some of it, is you.
What fits your pattern?
Fear of abandonment
Your beliefs, values or faith
Fear of experiencing painful emotions
Perfectionism and Fear of failure
Sense of entitlement
As you see, there are many things that can keep your “need to be in control” on high alert. Most of us are able to figure out what is causing our need to be in control. If you are not able to figure yours out, it may be time to see a talk therapist for a few visits. Why a talk therapist? They can help you to identify your triggers and they can help you with coping mechanisms and skills to help you keep yourself in check.
Here are some questions that I found to ask your control freak self.
7 questions control freaks could ask themselves:
How are you helping others grow?
Is this worth your time, attention, and energy (TAE)? Control freaks squander their talent by getting involved in trivialities.
How much of your TAE is spent on things that AREN’T working?
How might you choose personal growth and development when you feel like controlling others?
How are you putting long-term organizational interests ahead of your own?
How would you like people to interact with you?
Do you want compliance, contribution, or commitment from others?
Bonus: How much do you like loneliness?
Are you willing to let go of your illusion of control? Are you willing to accept and notice things as they are, right now, without judgement? The without judgement part, may send you over the edge, but hang-on you will feel better and actually be better.
You do not have to feel hopeless. You may actually have more hope once you get out of the muck and mire and see things, the way they really are. You can take a breath, relax and make better choices. You think that being in control keeps you safe, it doesn’t. Focus on your adaptability. That is what really keeps you safe. We can take situations as they are and we can find a way forward, make adjustments, & adapt. You have done it before and you need to go back and remember those successes. Learn to rely on your ability. That knowledge may help you to realize when you need help or when you need to let it go and let it be, as it is right now. Things will never be as they used to be and that is not always a bad thing. It is just different. You are learning something new. You are learning a new way to cope. Be kind to yourself. You are a work in progress, too.
What was the first big obstacle that found its way right in the middle of your path? You know, the one that kicked your ass. The one that made you doubt everything that you though you knew. That situation that you did not think you would survive. You got a punch to the gut or maybe a rabbit punch that you did not even see coming. It happens to all of us.
How long do you need to catch your breath and get your legs back under you? Yes, you got knocked down and it hurts. You waller for a little while or a long while, but eventually, you do get up and move forward again. It is only when you stay down and waller that you feel broken. Notice that I said, feel. We all know that our feelings can lie to us. Our thoughts mess with our minds too. Just who is in charge here? You learn to go with what you know and not how you feel. It is simple but it is certainly not easy. You keep having conversations or fights inside your mind.
Nothing that you try is working for your loved one. Doctors are not helping. A decline is happening and you don’t know what to do next. One thing after another keeps piling on. Your shoulders can’t take much more and your knees are beginning to buckle. What do you do next?
If you are smarter than the average bear, you take a time out, rest and recharge for two or three days and then look at things with fresh eyes. Maybe you call a meeting of the minds and brainstorm for options. Maybe it is time to call Pat and get a plan of action with options to access when you need them. Yes, that was a shameless plug for my services.
Making decisions under stress is a set-up for failure. Sure, it may work for a few days or even a week, but eventually, you will be dealing with a much larger problem and much more stress. Managing by crises is exhausting and you never get rested. When you are under abnormal stress your body dumps cortisol and the other stress hormones. This dumping of hormones activates the fight, flight, freeze or fawn types of reactions. You cannot physiologically make a rational decision. Your brain has been hijacked. You can make a decision or choice but it will not be a rational or logical one. You are really reacting to a perceived danger and will do whatever it takes to feel safe in the moment.
Regret. The feeling that you feel about 30 minutes to an hour later. You find yourself trying to reason out what in the hell has just happened and what is going on now? Oops! You don’t have the time to ponder that. Something else needs your immediate attention. Off you go. Your brain has been hijacked again because of another stress hormones dump.
Why do you feel broken? Have you failed at something? Are you beating yourself up for either making a mistake or not having good information? Are you just exhausted and running on auto-pilot? Maybe, you feel that you are only existing. You are not in control of anything and you cannot seem to get a handle on things. This expands to your whole life. Everything is running together and there are no clear boundaries anymore. Overwhelmed is what you are. You are not okay. You are grieving. You need permission to not be okay. Will you allow yourself too not be, okay? Will you tell someone that you are not, okay? Will you accept yourself as you are or will you still fight it? Will you let yourself feel your feelings? Yes, be still and feel your feelings and emotions without judging them. Let them be how ever they are. It is one of your body’s defense mechanisms to protect itself. You don’t have to solve anything, right now. Now is the time for accepting yourself just as you are. Maybe you feel broken because you are heartbroken.
Crap is changing and we do not like change. It is hard to change. It is hard to accept change. Acceptance of what is, right now, is one way to begin moving forward. If you have ever lifted weights, you know that it is hard to build muscle. It is painful. It is time consuming. You must give the muscle rest for it to grow and get stronger. It is the same way for us as care givers. We must learn new things. We must accept things that we do not want to accept. We must rest, accept and recharge to get stronger.
Sure, you can fight feeling your emotions and fight changes and even fight accepting things as they are now. You can stuff that shit down. Eventually, all that pressure will keep building up and escaping as a little steam (ranting and raving) until you are completely overwhelmed and explode leaving a damaging and sometimes un-survivable blast radius (relationships, job, friends, kids).
Tips for being more resilient:
Get more comfortable not knowing everything. We all want to know “why?”. There are times we will never know “why?’. Always wanting to know “Why?” will keep us stuck. When there is a feeling of being stuck, you will not move forward. Carl Yung says, “What we resist, persists.” So, stop resisting and learn your lesson, then move on.
Can you find some joy in what you are doing? Do you know “your why?” Learn to refocus on what truly matters. Learn to refocus on who really matters. You learn that you don’t have to give in to every whim of your feelings. Feelings can change quickly.
Feeling broken is an illusion. We have biases both known and unknown. Our feelings will lie to us and our emotions will fuel our beliefs. Our beliefs are linked to our perceptions of what is or what should be. Our beliefs determine how we interpret and feel about the events that happen in our lives. I don’t know where I read this or heard this, but it seems to be true. Once we form our beliefs, our mind has a natural tendency to search for the evidence to prove them right. It is not what happens to us in our lives that creates the experiences that we have, but it is our beliefs about those events that have happened. Basically, you can change how you view stuff if you challenge how and why you believe what you believe. Stop telling yourself, “I am broken,” “I can’t,” “I will try.” Every time I hear the phrase “I’ll try,” it reminds me of the character Yoda that says, “There is do or do not, there is no try.” I also heard it from a counselor that stated if you say “I’ll try” you are giving yourself a way out. So, do it or don’t do it.
When your give a damn, can’t give a damn. Find three things that you are grateful for every day and write them down.
Become more aware of when you are susceptible to feeling broken.
You are tired.
You are frustrated.
You feel nothing.
You begin beating yourself up.
You feel the “woulda, shoulda, coulda’s”
You feel shame, guilt or anger
When things become uncomfortable, you shut down.
When you feel some of these things, remember your goal or set a new goal. You need something to focus on. Something to bring you back to center. I am not saying stuff your emotions, I am saying do not let them get in control and hijack your brain.
Responsibility and discipline. They can be scary words and even scarier to accept and work on.
You are responsible for yourself and your own feelings. No one can make you feel anything, you get to decide. Discipline is when you decide what you will or won’t do.
You may be a little bent but you are not broken so stop trying to “fix” yourself. You just have some feelings that you need to deal with. Set a small new goal. Be consistent and achieve your goal. Keep going. Set another goal, and another and another. Keep growing. Keep getting better and better. Stronger and stronger. When you get knocked down, take a breather and get back up and move forward again. You don’t go back to zero, you begin where you left off. Give yourself permission to let go of old hurts. Give yourself permission to let go of the need to always be in control. Fuel your body with good nutrition. Hydrate. Move your body. Have compassion for yourself.
You are running around, feeling like a piece of taffy being pulled in six different directions at one time. Pulled by your job, pulled by your partner, pulled by your kids, pulled by your loved one that needs help, pulled by your own home chores, and pulled by your social obligations.
Many of us have felt that pull, with no end in sight. You are handling one problem after another and they aren’t crises, they are just everyday stuff. The mundane stuff even. The yard needs to be mowed, the car needs an oil change, this kid needs to go here at 6 and the other one needs to be there at 6, you need to make a hair appointment, there is a doctor’s appointment that you need to attend with your loved one and you project at work is coming due.
If you are a control freak, like I am, then you must have a plan and work the plan. There is no room for additions or changes to said plan once the plan has been figured out and ready to be implemented. It does not matter how well you have planned the who, what, where, when and how…something always arises to throw a monkey wrench in the works. Oh hell, now what am I going to do?
First, you have to determine where and when this monkey wrench will have to go in the plan. Is there a place or a workaround? If yes, then we are still good to go. But what if the monkey wrench blows up the plan? We scramble. What can we drop or pass off to someone else? What can we change or delay? All of these thoughts are running through your mind and you are running through the scenarios with the possible outcomes. You are also pissed that your plan is being messed with. You get madder and more frustrated by the minute.
What else is running through your mind? Be honest. If my brother would just help out more (or even a little), things would be so much easier. If my sister was not such a drama queen, we could work together and things would be so much easier. Why am I the only one taking care of this and making sure it gets done? I have a big project that I am working on and I do not have time for all this extra work and stress. Dinner? What do you mean, what is for dinner? Pizza Hut delivers, that is what is for dinner. Hey, where is my uniform? Did you wash it? The dog peed on the floor. Can you help me with…? All of these thoughts are running through your mind. You don’t realize that your mind is going 90 miles an hour. Why would you, your thoughts have always run through your mind. But now, now it is different. They are more than just thoughts. A lot more. They have become situations. Situations that have consequences and must be dealt with.
What makes the thoughts different? You have more responsibility. You know that you will have situations arising that will require you to make choices that have a real impact on someone else’s life. It is not easy to explain this to others that have not experienced it. Even if you did explain it, they still would not understand it. For other’s that have experienced it and gone through it, no explanation is necessary. They get it. It is true all relationships are different, wants, needs, and feelings are different. No one will ever know how you truly feel or what you are going through personally. They can’t, they are not in your head, they have not had the experiences that you have had. They can empathize and they may even tell you that they know how you feel. Most of the time what they really mean is, “I know what I went through and I know what you are going through.” They mean well and they are truly trying to help. Our own relationships and our own experiences shape us in to what we are today. I can only look at things from my perspective when I was dealing with my mom and Multiple Sclerosis and my dad as primary care giver. I can only see things that we went through individually and as a family. I cannot imagine not loving your mom and wanting to help in any way that you can. I cannot imagine not being able to speak my mind and disagreeing with my mom or dad and that being okay. Other folks cannot do that, they are not allowed to express their opinion.
I did work with a family that did not really care about their mom. They were in two other states and their mom was in a third state. At first, you think that they do care what happens to their mom, but the more you talk and ask questions the more you find out that they want their mom taken care of, up to a point. That family did not want to be bothered with coming in to see her or to do what was best for their mom. They did not want her needs to impact what they wanted to do in any way, shape or form. I did my job and made the recommendations for their mom and did what I could at the facility she was in (she had great caregivers at the assisted living facility) to provide the mom with the best quality of life possible. I decided that I would never work with a family that did not love or care about their family. If you love them and want the best for them, then we can work together. Does that mean you have to be the “hands-on” caregiver? No, not at all. It only means that you love this person and want them to have the best quality of life possible for them. I am not a hands-on care giver; it is not in my wheelhouse. I am not good at it. I am good at managing and deciding on the care that you need and want. I am much better at visiting, talking with them, going out to eat and being with them than I am providing the hands-on care of bathing, dressing, and all of the other activities of daily living.
We do chase a rabbit or two, don’t we?
What are the three things that would make your life easier when you are a care giver?
Are you able to adjust to different conditions or circumstances? Think back to the monkey wrench being thrown in to your plans. Ho do you react when things do not go according to your own plan? How do you respond? What goes through your mind?
Do you have a sinking feeling? A woe is me, awful feeling? Your plans have unraveled. How could this happen? Everything was set up and planned. Do you try to regain some type of control over the situation? Try to find a way to fix it? I know that I do. I try to fix it, for I must be in control. Look at all the negatives that this monkey wrench has caused. That son-of-a-bitch! (That is my favorite curse word phrase.) How long does it take you to stop looking at the problems that monkey wrench has caused? Fifteen to twenty minutes or much longer? Some folks get stuck and fixate on the negative consequences the monkey wrench caused for days. Do you have the luxury or time to be focused on the imploded plan or would you be better served by working on a solution? Asking “Why?” will always keep you stuck. Ask “How do we move forward?”, will get you unstuck.
Recognize that some things are beyond your control. I know that this is hard. I also know that when I stop railing about what happened or what went wrong, I am able to figure out a solution and maybe even a newer much better plan You don’t have to like it. You cannot exert your will over something that you have no control over. Look up the definition of insanity.
Get a grip and look at the overall picture. Is everyone still alive? Then, all is well. All will be well. Take a few deep breaths and tell your thoughts to shut up. You have work to do and your pity party is stifling your ideas.
What is the next opportunity? Okay, this got all screwed up and maybe you feel defeated. Your feelings can and will lie to you. Thoughts are just thoughts until you attach some kind of meaning to them. You do not have to act on thoughts or feelings. Take a few minutes and let your fight, flight, freeze or fawn settle down. Well, it will actually take about 30 minutes for it to really settle down.
Plan implosions or detours can sometimes work out better than what we had originally planned. If you are optimistic and at peace you know that things will work out. You don’t always have to know the how. Sometimes you have to trust the process. At all times you have to trust God to provide you a peace beyond all understanding.
Practice adaptability. It is not natural and it will take effort, but once you learn it you will be less stressed and more in control of your own reactions and responses.
[ flek-suh–bil-i-tee ]
the ability to bend easily or without breaking:
the quality of being easily adapted or of offering many different options:
the ability and willingness to adjust one’s thinking or behavior:
Have you heard the phrase, “Be like a willow, bend but don’t break.”? You may feel like you are dealing with so much stuff that you are about to break and those types of platitudes may actually cause you to break. You don’t have to break. You will, if you do not make some changes in your life. You see the three definitions above. Are you willing to make some changes in your own thinking and behaviors? Are you willing to take care of yourself physically, mentally and emotionally so that you can be a productive, able-bodied caregiver? Or are you going to stay as you are and be completely miserable? Being a care giver does not have to be awful. Being a care giver does not have to wreck your life. Being a care giver can be a blessing. It is not easy, but it may be worth it. Most of the time you cannot change the situation, but you can change your attitude.
Manage your stress. Do not suppress your anger, rage or resentment. Deal with those types of feelings in a healthy way. You always have choices. You will feel distressed. You will always wonder if you are making the right decisions. Try accepting the situation as it is. Just because we accept the situation as it is, right now, does not mean that we don’t seek solutions and better ways of doing things. I will never give up on a person. I will always do my best to find doable and workable solutions for them to have the best quality of life possible as well as the whole family. Along with accepting things as they are, what can you be grateful for? It is hard to train our minds to find the positive things or things we can be grateful for. Our minds automatically go to the worst-case scenario or to the “problems.” Pay attention to what your thoughts are at certain times of the day or when you have a headache starting or a lower back pain issue. Do you find yourself thinking about all the “bad things” that may happen or all the ways things can go wrong? Have you noticed that the worst things rarely happen?
What makes you desperate? Pain? Uncertainty? Pressure to make a decision? Inability to find good information? Not having a strategy? Unable to evaluate the plan effectively and make necessary changes?
We all suffer from information overload. TMI. What is good information? How do we know it is good information? Is it relevant to our situation?
You can find most anything online. How do you qualify it as good information? How do you find reliable sources? Public libraries have good databases that you can use. A reference librarian is of enormous help.
Use the CRAAP test.
Currency – When was the information written or posted?
Has the information been revised or updated?
Is the information current or out-of-date for your topic?
Do the links work?
Relevance – Does the information relate to your topic or answer your questions?
Who is the intended audience?
Have you looked at a variety of sources before determining this is the one you
Authority – Who is the author, publisher, sponsor or source of the information?
Are the author’s credentials listed?
Are the credentials legitimate?
Is the organization legitimate?
Can their qualifications be verified?
Is there contact information available?
Accuracy – Where does the information come from?
Is the information supported by evidence?
Has the information been reviewed?
Can you verify the information in another source or from personal knowledge?
Does the language or tone of the article seem biased or emotional?
Purpose – What is the purpose of the information? To inform? To sell? To teach? To
entertain? To persuade?
Do the authors or sponsors make their purpose and intentions clear?
Is the information fact, opinion, propaganda?
Does the point of view appear to be impartial and objective?
Are there political, ideological, cultural, religious, institutional or personal biases?
So, you see…” They said and I heard” are the two biggest liars in the world.
When to deal with it. When to ignore it. When to fight about it. When to take a break.
You have seen the t-shirts or maybe you have even said something like this …
It’s all fun and games until…Someone loses a weiner. (Feel free to add your own line.)
Someone calls HR.
Someone loses a nut.
Being with and dealing with someone who has a chronic illness such as depression, multiple sclerosis, Parkinson’s, Alzheimer’s, or migraines is all fun and games…at first. At first it is easy to do your work job, your house stuff, your play time, school stuff, church stuff, and all kinds of other “stuff.”
Eventually, more is needed of you. Your time, your efforts, your energy. Suck-it-up-buttercup works for a while. Then the demands on your time become draining. Do you take a time out and rest? Do you take a couple of days to recharge? No. You keep doing what you need to do. What you have to do. I get it. You want to be there for them and help them. You do love them and want the best for them. But…
Eventually, there is always a “But…”
Take three minutes and assess where you are in the care giving cycle, what is going on with your work, your family, your responsibilities, your care receiver, your physical needs, your mental needs, your emotional needs?
If you haven’t found your “but,” then either you are new to this or you won’t let yourself think about it. You can compartmentalize and stuff things down, for a while too. You put your job in one box. You put your personal stuff in another box. Another box has your care giver duties in it. Everything has their own nice little box and never are the boxes to leak or burst open and mix with the other boxes. Sure, you have everything under control, until you don’t Shit happens and at the most inopportune time. No matter how secure your box is, there will come a time when you will have to deal with all of it. How do I know? I have done it myself. I pushed things down. Ignored things and people. Yelled at work. Ranted and reaved at home. For minor things. Silly, little things. I didn’t know, at the time, that my boxes were leaking. I didn’t realize that I was very short tempered. I didn’t realize the damage I was doing to my techs who worked with me. I didn’t realize that my boys were becoming scared of me. Imagine how it feels when you do realize all of those things and more. The apologies you have to make. The rebuilding of trust and security for the boys. The knowledge that nothing will ever be the same. Even with forgiveness, no one forgets. I did do better, when I knew better. I wasn’t taking care of my needs. I had to put myself in the mix to rest and recharge to be able to help my dad who was the primary caregiver to my mom.
Should you always deal with a situation when it arises? My personal preference is, yes, deal with it now. If it were only that simple. If it only involved me, it would be simple. It does not just involve me. It involves three other people. Dammit. Now we have to discuss it, think about it, discuss it some more and then there is always someone with an objection. How about if we, identify the situation as best we can from our own points of view and agree to discuss it at an agreed upon date and time. Did you know that everyone has their own unique point of view? Did you know that a care receiver and a care giver have totally different views at times? Most folks have no idea what the care receiver wants or needs, they just assume according to their own wants and needs. If you are going to help someone else it is probably a good idea to talk with them to find out the who, what, where, when and why’s of things.
What if we could get away from right or wrong? What if we could be open to the possibility of many different ideas, ways or opportunities? If I can realize that it is not always my way or the highway, then you can too. Give each other the time and good information when there is a major decision to be made.
Some things you do need to ignore. Some things do not need to be handled right now. The things that will not matter in a month, you ignore. The things that will not matter in a year or two, you ignore. The minor household chores that can be delayed, ignore them until another time when you are better equipped to make a decision. Decision fatigue is a real thing. It takes a lot of energy to think and make decisions that are new to you. I know this sounds like management by crises, but it isn’t. You get to choose. Make the best choice possible with the information that you have, right now. It is a gift to be able to make a decision before a crisis hits. A plan of action to implement, when needed, is a lifeline. Usually, the things to ignore are behavior issues. You may be dealing with an angry aging parent. They may have outbursts. Abusive behavior you cannot ignore. You must take care of yourself. They may refuse to bathe or change their clothes. Ok, so ignore it for a day or two. If they are not in harms way, sometimes you have to let them be. Your family knows your buttons and they know how to push them and they will push them. Can you ignore the button pushing? Can you, let it go? If you can, you will be much happier and much more in control. If you can’t ignore your buttons being pushed, you will get stuck, become even more frustrated and stressed out.
What about fighting? I am not talking about physical fighting, I am talking about arguing, which is fighting in my world. This one can be tricky. Some families cannot handle fighting in any way, shape or form. They would sooner give up everything than to fight. Other families can have a frank discussion with fighting, work it out and move on with no hard feelings. Others can fuss and fight and have hard feelings for many months, even forever at times.
I wonder what is causing the fighting? Feeling unheard or ignored is a big trigger. Listen to each other first. Use a talking stick. You know, the one holding the stick gets to talk and then when they are finished, they pass it on to another person. STOP figuring out how you will respond. If you are figuring out how to respond, you are not listening. Listen for understanding. Sometimes people may say the wrong words, listen for the understanding and feelings behind the words. You do not have to agree but you do have to agree to disagree. Are you open to the possibility that the choices you must make are for right now? That in a week or two you may make different choices. Sometimes there are no good choices. There are only the choices that you will regret the least making. I wish that I could tell you that all your choices will be logical, but that is not realistic. Are we fighting because we are afraid of making a mistake or a bad choice? Guess what? You will make mistakes. You will make a bad choice. They can be rectified, almost all of the time. When you make a bad choice, do what athletes do, pat your chest twice with your hand and say “my bad.” Then move forward. Stop beating yourself up. Did you do the best that you could with the information you had at the time? If yes, move on.
Instead of fighting what if we worked on one issue at a time and not the lifetime of issues? I understand that some folks cannot find common ground. In that case, place the needs of the care receiver and the hands-on caregiver at the top of the list. You may find that a dictatorship is the best way to proceed.
I am amazed at the folks that do not talk to a relative because of an issue with hurt feelings. I have seen it in my extended family but not my core family. We could always express our opinion, discuss, fuss, fight or whatever we needed to do without fear of being cut out of each other’s lives. You do have to work within the parameters of your family dynamics. We could chase many rabbits on this topic.
When to take a break? Before you are drained would be ideal. You will need physical breaks and mental breaks. There will be times that you are too overwhelmed to make a decision. Too tired or you do not have enough good information to make a decision yet. Take that time out. Agree to take a break if a discussion becomes too intense. Come back in a couple of days or another week. Maybe you are at an impasse. Who will be the ultimate decider?
Chronic stress can kill you. Take a break to rest and recharge.
Key signs you need a break include:
Changes in eating habits
Cynicism about work
Getting sick more frequently
Lack of energy
Lack of motivation
Feeling unfocused or fuzzy-headed
Physical symptoms such as headaches or stomachaches
Poor performance at work
Using drugs or alcohol to cope with stress
Withdrawing from friends, family, or co-workers
What days or times will you be taking time off? Write it down on the calendar. Yes, write it down. What gets written down, gets done. Realize that you will feel uncomfortable doing this. It is okay to feel some discomfort. Do not let that discomfort derail you from much needed time off or time away. You will come back stronger and more able to deal with any issue that may arise. Even an elite athlete needs days off.
Emotions, Feelings and other things that mess us up!
September 1, 2021
Do you love someone that has a chronic disease such as Alzheimer’s disease, Parkinson’s disease, Multiple Sclerosis, Migraine, Depression, Arthritis, Cancer, Asthma, COPD, ALS, and more? Are you one of the ones or maybe the only one that takes care of them or you see to the daily care of them by someone else? Congratulations! You are a caregiver. Yes, even if you do not provide the hands-on care day to day.
Last week I told the story of why I do what I do. I gave you the nuts and bolts of what happened. This week it is about the feelings and emotions that I experienced. When I let myself deal with them? This is the story that I did not and do not want to write. It is hard. It is messy. It makes me feel weak.
I wanted to start out by showing the Robert Plutchik wheel of emotions and do some explaining. Why? Because it would have been an easier way to describe and show emotions, feelings and how every thing connects. It is a good graphic. You see, it is much easier for me to teach you something. It is much easier to show you something and how things are intertwined.
Emotions get messy. Feelings are all over the place. They sometimes do not make sense and they rise up at the most inopportune times. They do not follow a straight line nor are they in order. There will be some cussing in this article. I can only promise to do my best in telling you what I have experienced, dealt with and other crap. It may be disjointed and out of order with regards to the timeline of my mother’s MS diagnosis, the things I dealt with through the years, and my mama’s death and the years that followed.
Some of the feelings –
Anger – Things are messing up my plans and I don’t like it! Always remember it is really not the person causing the anger, it is the situation.
Rage – Too much crap coming at me all at one time and I will be taking it out on those I love and are close to me. The ranting and raving will cause very unkind words, the throwing of objects, or even complete shutdown so as to not let things fly.
Disappointment – In yourself, your abilities to take care of things. You know, failure. The one thing that you cannot abide. You must not fail, you cannot fail, this is too important.
Ostrich time – When you stick your head in the sand and think, “If I don’t see it, then I don’t have to deal with it.”
Do it all – Are you being a martyr? You know perfectly well that others can and will help, if you would only let them. Have things for them to do and help you with. I have met some people that want the accolades and “oh, you poor dear.” They want the attention from others. It happens more than you know.
Frustration – This is a biggie. You feel like you cannot fulfill needs. Too much uncertainty and insecurity. You feel out of control and you hate that feeling most of all.
Irritated – minor things start building up and when you don’t accept things as they are…you start moving into the Anger and Rage.
Anxiety – Things are out of control and you don’t know how to bring them back under control. This is actually your early warning sign that something is not right. You may be feeling the urge to run away or cry.
Boredom – You don’t get to do anything that brings you joy or happiness. You are existing. This is the time when you realize that you need some “me time” or respite care.
Depression/Sadness – These two are together because prolonged sadness can lead to depression. You are under tremendous stress and that pumps cortisol and other hormones throughout your body. Brain chemistry can and does change over time. Maybe, it is time for you to see your doctor.
Disgust – Having to help someone toilet or bathe may be too intimate for you to handle. It can be very uncomfortable or unnerving to help with these types of private issues. Think about changing a baby’s dirty diaper. Now, think about changing an adult’s dirty diaper.
Embarrassment – Yes, even embarrassment. Some folks will not bathe. They will not change their clothes. They just stink. I am grateful that we did not have to deal with a bathing or changing clothes issue. Occasionally, it may be a feeding issue and food or drink goes everywhere. Here you are out in public and a big mess happens.
Impatience – You have all of these things that you want to accomplish today and your care receiver can’t even get up and get dressed much less eat breakfast before that 10:00 appt. Notice what is happening here – it is about you and what YOU want to accomplish. It is no longer about you. It is about them. It will take three times a long as you have planned to do anything. Take a break or a time out. When you begin to force them, you are beginning to abuse them.
Loneliness – You are isolated and you don’t have your support network to be with or sometimes even to talk to.
Crankiness – Because you are so tired. Your sleep is disturbed. You can’t fall asleep, you can’t stay asleep, your care receiver gets up at all hours of the night, etc.
Resentment – You did not choose this. Maybe you have brothers and sisters that are not helping out, or maybe you are an only child. Every family puts the “fun” in dysfunctional. It is the situation.
Feeling unappreciated – Learning to accept help is very hard. None of us wants to be dependent on anyone else. We may even push those trying to help away. I wish I had a fix for this, but there isn’t one. You will have to pat yourself on the back. The care receiver will not see or acknowledge what you are giving up to help them nor will they thank you. So, you can accept this for what it is or you can keep getting your feelings hurt.
Guilt – the feeling that we have when we have done something wrong. The guilt will come in many forms. Over not having done enough to have prevented “X, Y or Z.” Guilt over your impatience or how you have treated them sometimes. You feel guilty for thinking about your own well-being. Any number of things may cause you to feel guilty. Will you giver yourself permission to forgive yourself for not being perfect? Will you forgive yourself for the “shoulda, woulda’s, could a’s?” Will you accept that you are doing the best that you can and that is good enough?
Fear of failure – This is the one that smacks me right in the face. I cannot fail. I must not fail. I will not fail. I can only do my best. What if something happens? How will I cope? Will I feel guilty? All of these scenario’s race through your mind. The “might happen”, the “what ifs.” All those do is to keep us stuck from dealing with what is happening, right now. This is where having a contingency plan in place is very helpful. I like contingency plans. While it may not cover everything, it will cover most things. Ahh, some sense of control. Now we can rest and recharge.
Grief – Watching them decline hurts. Sometimes it huts too much to deal with at the time or if you are like me, you don’t even know it is happening. You just stuff shit and soldier on.
Who are you? What is your natural tendency during regular times? What are your tendencies during stressful situations?
What is Pat Collins’ basic temperament and usual state of being? I am content. I am usually positive and hopeful, even when things do not go as planned. I do like things to go my way. I am a bit of an ass. If I think something is right, I will choose that. I am open to others’ ideas and opinions, usually. I will do what I think is best for my family and not just me. I deal with whatever situation is happening at the time. If I make a mistake or what I tried did not work, then I figure out something else to try. I am open to trying things that are science based, but no “woo-woo” stuff. I am confident in what I know and others see this as cocky sometimes. I am caring and want the best for folks. I hate people that mistreat or hurt others, especially those that cannot care for themselves. I have faith in God.
My mom was diagnosed with MS in about 1990. I did what research that I could at the medical library. Remember, this was pre personal computer days. Not much was written about it. I prayed to God, “just don’t let my mama die.” That was the first emotion. Fear of my mama dying. Only think and feel this at night while alone.
Get on with everyday life. No personal emotions allowed during work. Learn to compartmentalize. Apparently, I did learn that and learn it well. As the weeks passed, I became more relaxed about my mom’s condition. I had done my research. I had talked with her neurologist, and we were good with the treatment plan. I knew that my mama’s life would probably not be shortened by MS. We would have to make adjustments, but we could handle that.
None of us talked about the eventuality of her becoming disabled and needing 24/7 care. We always thought that time was way on out, if it happened at all. Mama was the one that brought up going to a nursing home. She was the practical one. Daddy would not hear of that; he was determined to keep her at home. You would think that me, my brother and my dad would talk about the future needs. I am a pharmacist; my brother is a physician and my dad was still working full time and so was my mom. But, no we did not. There was no need, right now.
Life was pretty normal for five years or so. My brother and I had careers, families and our own things to do. You know, the everyday things that you deal with. Work could be stressful with some patients/customers. Work could also be stressful with budgets, hiring, training, ordering, inventory control and filling prescriptions I would be aggravated, angry and just plain tired some days. Oh yeah, throw in the sports practices, games and homework along with eating dinner, bath time and bedtime. All of these “mini-crises” can take a toll too. You don’t realize that though. It is just a day in the life. Everyone has them and you handle it and move forward. My decompress time was reading the newspaper in the evenings after I got home and checked on everybody. I worked 9 am – 9 pm shifts, every other day and every other weekend, unless I filled in at another pharmacy. That extra was more often than not. I was always hyped up from the day of work and it would take until midnight or 1 a.m. for my thoughts and brain to settle down. They weren’t bad thoughts, just thoughts of the day (the replay), situations or whatever had happened. The thinking about what was coming up, etc. Just stuff. I would lift weights and walk regularly. See, I did have an outlet for stress. I never liked the taste of alcohol and so when I was drinking in high school or college, it was to get drunk. I have tried different drinks after pharmacy school, but I did not like any of them. I am not a fun drunk anyway; I just want to go to sleep. I would rather have an iced tea, water, or a soft drink in a social setting.
Moving on to the late 1990s to early 2000s. Things are beginning to get more time consuming on the mama front. The boys are getting older and into more specific sports which require more practice and more practice days every week. Oh, and now they are beginning to have social lives with parties, sleepovers and playdates. Their lives are way more active and social than mine. Hmm,
I am getting tired and pissed at being summoned down to the house to deal with mama and daddy because it seems as though they are acting like children. What was really going on? Nothing, if you ask them. Just the same old same old. Bullshit! I have mama upset and wanting to divorce daddy and I have daddy telling me he doesn’t know how much more he can take. Yep, everything is good, until it isn’t. Mama had begun having mini-strokes by now and they were affecting her behavior and so was the MS. I was mad at her for smoking, in the bathroom all these years. She never did smoke in front of us. I tried to get her to quit, but it never happened until she was diagnosed with beginning emphysema. We get to deal with the aftermath of her poor choices is what I was thinking. How can I love my mama so much and be so mad at her? The opposite of love is not hate, it is apathy, you just do not care anymore. I don’t have the luxury of being mad right now, I have to fix shit. That is what I do, fix shit. I am observing and talking with both of them, separately of course. Listening for clues as to what is really going on. I love my daddy, but he can piss me off in a New York minute. If daddy, has it in his mind that something is or is not “right in his way of thinking” then he will not listen to reason or change his mind. Mama has declined and it is not the normal MS decline issues, other things are impacting her. I suspect depression and probably more mini-strokes. She needs to see a psychiatrist. I make that suggestion, and daddy is not having any of it, because he does not “believe in that.” He told me that I could make the appointment and take her, but he was not going to do it. Let’s recap, I have mama and daddy in a pissing match, I am working full time and helping with the boys. My partner is having severe migraines and is out of commission for most of the time. Now, it is all on me to handle. I handle it. I handle it all. I handle everything but my own needs. My wants and needs are pushed to the back of the line. I do not yet realize that as I am in “fix it or handle it” mode. I don’t yet realize that I am a bear to work with at work. I am short and curt in my speaking. I have no tolerance for any little mistake. My mind is elsewhere. I do what I have to do. I get the boys to where they all three need to be and by when they need to be there. I have to leave work, which stresses me out, for 20 minutes to take care of my partner’s needs. I get others to help me run the boys’ places, if I can. I send my tech out to take a child somewhere. I am doing management by crises and I don’t like it at all. Right now, I don’t have the luxury of being able to plan ahead. I am in the middle of it and I am just surviving. I am certainly not thriving. I am mad, angry, upset, frustrated and I keep stuffing all of those feelings down. I would not be able to express those feelings without exploding on someone. When pushed, I can and will explode. I don’t like myself when I do that. I do prefer to talk about things before they get totally out of hand. I am not known for taking a time out first and it would be better, if I did. My preference is to deal with whatever arises when it arises and then be done with it.
What happens when I stuff my feelings? Some of this, I did not know or realize until others pointed it out to me. I was mentally exhausted. You cannot unhear what you have heard even though you know it wasn’t really the person, but the disease or condition. Increased tension headaches and migraines. To the point of daily tension headaches. Stomach problems and in my case cramps and diarrhea. I would blow up at small things that never would have bothered me before. Leaving others to deal with my wrath and wondering what they had done to deserve that? They did not deserve it; I was too busy not dealing with my negative emotions that they just kept bubbling up and were always right under the surface…waiting to explode on anyone and everyone. I had a difficult time experiencing joy and happiness during this time. My neck and shoulders were permanently tight and knotted up. At one point, I thought I was having a heart attack, until I realized that I had forgotten to take my Prilosec® for the past three days.
The rage and anger that I felt. It wasn’t at my mam or even God. It was at the MS and how our lives had changed. It was not what any of us had planned. Fear of the unknown. Not being able to plan things. I am a planner by nature and when I have to go with the flow…that is hell to me. I was mad. I loved my mama; how could I be this mad? Because, my life was impacted. My days off were being taken over. I missed my partner, my boys, and my time. I did not have a choice and that made me even madder. Daddy would not do what I asked of him and that pissed me off too. Yes, I felt like giving up and throwing in the towel. Saying, fuck this shit, I’m out. The hurt that my heart felt when I would hear my mama say some things that were not like her. I know it wasn’t her, but damn, it hurt and I can’t unhear what she said. This is where you have to know what you know. You have to know who your mama is and who she is not. The mama I had grown up with was no longer here. The funny, loving, smart woman was no longer here. She had changed or rather her mini-strokes, depression and MS had changed her. Not all of her, but quite a lot of her personality. I can’t explain it, it is something that you feel, you know and you understand.
Stuffing emotions and feelings. I was very good at it. I was not good at dealing with the slip-ups or the aftermath. I had to go back a few years after my mom’s death to see what had happened and how I coped. I did not realize that I was grieving my mom’s death way before she died. What had I done to my partner? What had I done to my boys? Work? What had I done to myself? Buckle up, it ain’t going to be pretty.
I felt lonely. I felt isolated. I felt like I was the only one trying to take care of shit. I felt anxious and on alert all of the time. I could not relax. I did not work out or walk and that made me feel worse. I thought I did not have the time nor the energy to work out regularly, I had too much going on. Too much that needed my attention. I was so wrong. I would have been much better off emotionally and physically if I had kept up working out and walking. It is probably a good idea that I do not like the taste of alcohol. A lot of folks do use alcohol to cope.
I didn’t know that I could feel the emotions or feelings and just let them go without putting an attachment to them. Those thoughts and feelings go through our minds all of the time and really all we have to do is acknowledge them and wonder why this is showing up? I did not know that I could be curious about a feeling or emotion and why it may have gotten triggered. Yes, we all have buttons that can be pushed. Our family knows all of our buttons and they push them so well. We have to relearn how to engage or NOT to engage. It can be done and you will not longer be triggered. Guess what? That trigger has no power over your anymore. That is beyond the scope of this article.
Every felling has a message. It is trying to tell you something. It is best to deal with them as they arise and not let them build up pressure to an explosion. If you are an empathetic person some of the feelings or emotions you may be carrying around are not yours. You may be picking up on others feelings and emotions. I know that it sounds weird, but energy is energy.
I wasn’t available to attend to my partner’s or my kids’ emotional needs. I was in survival mode. I was not the hands-on caregiver to my mother. My daddy was. I was doing my best to get her to the doctor that she needed to see and the medications that she needed. I cannot imagine the stress that the hands-on caregivers are under if they have their own career, spouse, kids and home to take care of too. I know the stress that I was under. I know the hurt feelings that I caused my partner, my kids, my technicians and my patients. You can never apologize enough. You can never make up for it. All you can do is do better and be better from now on. I hated the distance that was between me, my partner and my boys. My oldest was still in high school when my mom died. They are all grown now and doing well. My partner and I are no longer together.
The stress response begins in the brain (see illustration). When someone confronts an oncoming car or other danger, the eyes or ears (or both) send the information to the amygdala, an area of the brain that contributes to emotional processing. The amygdala interprets the images and sounds. When it perceives danger, it instantly sends a distress signal to the hypothalamus.
When someone experiences a stressful event, the amygdala, an area of the brain that contributes to emotional processing, sends a distress signal to the hypothalamus. This area of the brain functions like a command center, communicating with the rest of the body through the nervous system so that the person has the energy to fight or flee.
Happening in the brain
The hypothalamus is a bit like a command center. This area of the brain communicates with the rest of the body through the autonomic nervous system, which controls such involuntary body functions as breathing, blood pressure, heartbeat, and the dilation or constriction of key blood vessels and small airways in the lungs called bronchioles. The autonomic nervous system has two components, the sympathetic nervous system and the parasympathetic nervous system. The sympathetic nervous system functions like a gas pedal in a car. It triggers the fight-or-flight response, providing the body with a burst of energy so that it can respond to perceived dangers. The parasympathetic nervous system acts like a brake. It promotes the “rest and digest” response that calms the body down after the danger has passed.
After the amygdala sends a distress signal, the hypothalamus activates the sympathetic nervous system by sending signals through the autonomic nerves to the adrenal glands. These glands respond by pumping the hormone epinephrine (also known as adrenaline) into the bloodstream. As epinephrine circulates through the body, it brings on a number of physiological changes. The heart beats faster than normal, pushing blood to the muscles, heart, and other vital organs. Pulse rate and blood pressure go up. The person undergoing these changes also starts to breathe more rapidly. Small airways in the lungs open wide. This way, the lungs can take in as much oxygen as possible with each breath. Extra oxygen is sent to the brain, increasing alertness. Sight, hearing, and other senses become sharper. Meanwhile, epinephrine triggers the release of blood sugar (glucose) and fats from temporary storage sites in the body. These nutrients flood into the bloodstream, supplying energy to all parts of the body.
All of these changes happen so quickly that people aren’t aware of them. In fact, the wiring is so efficient that the amygdala and hypothalamus start this cascade even before the brain’s visual centers have had a chance to fully process what is happening. That’s why people are able to jump out of the path of an oncoming car even before they think about what they are doing.
As the initial surge of epinephrine subsides, the hypothalamus activates the second component of the stress response system — known as the HPA axis. This network consists of the hypothalamus, the pituitary gland, and the adrenal glands.
The HPA axis relies on a series of hormonal signals to keep the sympathetic nervous system — the “gas pedal” — pressed down. If the brain continues to perceive something as dangerous, the hypothalamus releases corticotropin-releasing hormone (CRH), which travels to the pituitary gland, triggering the release of adrenocorticotropic hormone (ACTH). This hormone travels to the adrenal glands, prompting them to release cortisol. The body thus stays revved up and on high alert. When the threat passes, cortisol levels fall. The parasympathetic nervous system — the “brake” — then dampens the stress response.
It is not just emotional. Stress impacts your brain and your body. I am not one to talk about my feelings or emotions. I do know that I have them and I do feel them. I am a work in progress. I get better every day. I don’t want others to have to deal with all these negative emotions and feelings that will hurt them and their loved ones. I may not talk about it a lot, but it is my primary purpose in starting my business. Every relationship is different. Everyone has different feelings and emotions that are triggered. I can relate to what you are going through because I have been through it. No one will ever know exactly how you feel. We are all unique. We have different relationships with our loved ones. I know how to lessen the stress, anxiety and burden that you feel when you have to handle a loved one’s health care needs. Imagine how you would feel if you were a better manager for your loved one. Imagine how you would feel if you had a plan to access when you needed. Things will happen. We don’t know when. Are you prepared? Do you want to be prepared?
865-684-8771 (leave a message, if I am unable to answer)
We will discuss more about Robert Plutchik’s Wheel of Emotions.
Primary: The primary level circle indicates the basic type of emotions: trust, surprise, joy, sadness, anticipation, disgust, surprise and anger.
Opposites: Now understand, every primary emotion has a reverse emotion. Such as fear is reverse to anger, ecstasy is the opposite of grief, anticipation to surprise and so on.
Combinations: As you can see the faded petals [no color] it represents combinations of two primary emotions. For example, disgust and remorse gives remorse, similarly joy and anticipation offers optimism.
You are going right along and everything is going okay. Then, all of a sudden…Bam! Something happens. The something may be a decline in health, it may be an increased need of your time when you don’t have the time to give, the something may even be that your job is now requiring more of your time and energy.
You may be the “hands-on” caregiver. You may be the one that is making sure your loved one has a caregiver. You may be the one scheduling all of the appointments, taking care of the house and other chores along with your own stuff.
Are you a caregiver? Sometimes people do not view themselves as a caregiver if they are not providing the “hands-on” care. If you are seeing to the care of your loved one in any way, you are a caregiver. Being a caregiver will take a toll on you, your health and your relationships. Does that mean that you don’t do it? Of course not. It means that you need to be aware of the common stressors and strains that you will experience.
Being a caregiver is not easy. Being a caregiver can be rewarding. Being a caregiver can provide special and cherished times with your loved one. Being a caregiver can be maddening and fill you with anger, rage, resentment, guilt, and numbness. Being a caregiver can put you on autopilot. Being a caregiver can make you ignore your own health and needs.
I will share my experience with my mom.
My mama was a smart, funny and encouraging person. She was a schoolteacher. She was independent. She loved God and her family. She was also stubborn and never complained. Her name was Alice and if she was the one that caught you doing something you were not supposed to be doing, she was the one that busted your butt. Growing up with her was fun and secure. My brother and I were taught how to think for ourselves, make decisions and accept the consequences from both our parents. I enjoyed talking with her on a new level as I grew up, graduated college and started my career as a pharmacist.
It was about 1988 or 1989 when I received a knock at my door one early morning. I had no idea who would be knocking at my door before 7:00 a.m. It was my mom, who lived an hour away from me. She was stopping by to tell me she was on her way to U.T. hospital for an MRI, that she may have had a stroke. My mind begins racing and I know I have to be at the pharmacy at 9:00. I took a quick shower and followed her to U.T. She was just matter of fact about the whole thing and I wanted answers. This is my mama! Of course, I knew we would not have the answers that day. She seemed fine and so I went on to work.
Two weeks later I go with her and daddy to the neurologist. When she came out, she handed me a pamphlet that stated Multiple Sclerosis. We had done a few neurological cases in pharmacy school, but MS was not one of them. Remember, this was pre-computer days. I did not know enough about MS but I would find out. I got permission to use the Medical Library at the hospital and did my research. Apparently, not a lot was known back then as all I could find about MS was one paragraph that basically stated “we don’t know and life expectancy was not thought to be affected.” That did not sit well with me and so I began to try and find out more information and mama let me go with her to her neurologists’ appointments. The neurologist was very good and helped me understand more and more. We would discuss treatment options and things to try.
Mama did well and kept on teaching. I met an amazing partner with 3 boys and we became a family. Life was good. In the early 1990’s mama began to have some concerning issues with numbness and weakness with her legs. She was more tired. By this time a new drug had been released and she began taking injections of Betaseron®. That helped for awhile and we all go back to our daily lives. The boys are in school and in sports. I am working 12 hour shifts and every other weekend.
The pharmacy became computerized in the early 1990’s and I could do some more research. Nothing like it is today, but I could access some papers form medical researchers. Inflammation and heat seemed to be the culprits demyelinating nerves of the brain and spinal column. I had a probable cause and now I am on to finding the ways to decrease inflammation in the body. We new about free radicals and inflammation damage when I was in pharmacy school, we just did not have medications to decrease them. Later, we learned that anti-oxidants would bind up the free radicals. But, the damn inflammation. It is very difficult for medications to cross the blood brain barrier (BBB). Yes, we could treat arthritis inflammation with non-steroidal anti-inflammatories (NSAIDs), but those medications did not seem to help the type of inflammation that MS patients experience. We continue with vitamins (for free radicals) and NSAIDs for her arthritis.
Early 2000s mama retired early and daddy kept working. She was using a cane and walker and soon she got a motorized scooter. Daddy had the house modified for a roll-in shower and he was determined to keep her at home. We all were, if possible. Mama began falling and it became evident that she would need someone at home with her. Daddy retired early. My brother and I were working and raising families. He was two hours away and I was an hour away. My parents were on a trip to see my brother and she had some kind of episode and was out of it, My brother is a physician and he took them to the hospital for tests. It appears she has had a ministroke. Mama has been a closet or rather bathroom smoker forever. Daddy finally quit smoking but he did the chewing tobacco and snuff for a long time before he finally quit all of it. She would not quit. I hated any and all smoking. It was very irritating to me and I would cough and cough and the smell was horrible too. Did she quit smoking? Nope. It took a little while longer and a diagnosis of beginning emphysema for that. But she did quit.
I am getting summoned down to the house more and seeing changes that I cannot blame only on the MS. Depression, and MS side effects here we go. The person that was my mama was no longer there. And, she would not be coming back. Mama is ready to divorce daddy and daddy doesn’t know how much more he can take. Oh hell. Now what? I suggest that daddy take her to a psychiatrist. Nope, he does not believe in that and is not going to take her. He told me that I could come and take her. I am stuck. I have to work and I have the boys and their stuff. My brother is building his solo practice and is raising his family. This shit show goes on for three months and it is getting bad. I make an appointment and somehow get daddy to take her. She is started on some anti-depressants and sleeping medication. Has she told anyone that she is not sleeping? No, of course not. When I would call, it was always “I’m fine or I am doing good,” I know that generation does not complain. I get it, I am just the kid and I am ten years old in their eyes. Never mind that I am a pharmacist. My brother experienced the same thing with them and he is a doctor. It was their business and they were fine. How do you suggest things to get them to act became the new game?
A couple of months after beginning her antidepressant medication and actually sleeping mama became more like her old self. There were things she could no longer do. Pay bills, do the taxes, do crossword puzzles (may have been due to some eyesight problems). You will find out as I did that, they are very good at covering things up and they will even help cover for each other. You may find them smiling and nodding more when they are covering up a hearing loss. They won’t like to talk on the phone or especially a cellphone (they really can’t hear very well.) The house is not as clean as it once was. The sinks or counter tops are dirty or have crumbs everywhere. They cannot see as well and they miss those things. Weird bruises? They may be off balance and bumping in to walls or things and maybe even falling.
I know, we chased a rabbit or two there. Anyway, mama needed to be in the hospital for a couple of days for an infusion of steroids. I was with her and stayed. The nurses were trying to get her to help them to move her up in the bed. I told them that she can’t she has MS and her legs don’t work. All they said was, “Oh, we don’t have her chart yet.” The hell you say, you mean you haven’t read it yet. I will be your worst nightmare at the hospital if you are not doing your job. I have a medical background and I know what should be going on and what should be happening. I know the questions to ask and I will be a pest.
It was during this hospital stay that I realized that I am not a “hands-on” caregiver. I love my mama more than anything and I will see to it that she has what she needs and who she needs to help her. It was eye opening to me that I could not do the “hands-on” stuff. I thought that I could do it all and help mama with whatever needed to be done. Maybe, I could do what needed to be done…if it had to be done, but it was not going to be easy for me and I was not good at it.
Seeing that what needs to be done gets done is what I am good at. Figuring out stuff is what I am good at. Figuring out who needs to do what is what I am good at. Basically, I am a great health care manager.
With that realization I try to get daddy to get some in-home care help. Nope, he is not having it. They do finally get home health a few times a week because she needed to have a catheter. She was mis-catheterized once. They placed the tubing vaginally instead of uretherally. Daddy took care of that problem and changed home health companies. Never be afraid to ask questions or demand competence.
Things are going smoothly once again. Mama and daddy are getting out and about. Coming for visits to my house and my brother’s house. It is 2005 by now and mama has been telling everyone that called that her birthday month is coming up. No, not day, her birthday month and what all she wants for presents. It was her 65th birthday July 16. We had a party for her at my house with dinner and cake. Presents too. It was a great day and she had fun.
A few weeks later, I am at work on a Sunday and I get a call from daddy. Now, mama does the calling and daddy will get on the phone to talk a little but he is not the one to make the calls. Already my hackles are up. My mind goes into emergency mode before he has said anything. He says, “Pat, mama’s kidneys have shut down and they are taking her to Parkwest hospital.” He will let me know something when he knows something. There is nothing to do so stay at work. I did stay at work knowing that we closed at six. I take off for the hospital after work and she is in the critical care unit (CCU). They will be using dialysis to take the load off of her system to see if her kidneys will start filtering again. My brother is there by the time I arrive. We get a plan to visit and all go home. Daddy comes back up on Monday and stays all day at the hospital. We get to visit 15 minutes every four hours. He won’t leave the hospital. I finally convince him to stay at my house as it is only 20 minutes away. He goes every day for the first visit and does not come home until the last visit is over. I visit on my off days and I close the pharmacy early on my work days so I can make that last visit of the night. She seems to be getting a little better and at night the staff is more lenient on letting my brother and me looking at the lab results and records.
It is in reading those records that you see what is really going on. What the reality may be unless things dramatically change for the better. It is the first time that I saw that my mama was in the late stages of MS. That she was really weak and in danger. I am in full compartmentalized health care mode. I am searching and researching for what to do. I know that a nephrologist is in charge, but I have to do something…I cannot just be still and wait. Of course, the nephrologist is doing all the right things, but still, I wonder. I find myself being the medical person, not the daughter. If I am the daughter, then I must feel all the feelings and emotions that will rise up. The thoughts of her not making it and leaving us. What would my daddy do? What would I do? Nope, not going there. Stuff it down, soldier on. Facts, figures, what to do if this does not work is where my focus is. I hate waiting! I hate not knowing! I can’t deal with the hurt, the scaredness, or helping my dad deal with losing his wife and my mom. I still have to work and be on top of my game there or someone could die. My boys still need to go to school, go to practice and games.
Here is where things get fuzzy as far as timing of things. Mama knew about what was going on in the world with Hurricane Katrina. She slept a lot and we were told that she may have to go on a ventilator so she would not have to work so hard to breathe. This was Friday night at the last visit and my dad, my brother and myself were there at that visit. We all had plans to meet there on Saturday. We get home and my dad goes to bed. About 15 minutes later, the phone rings and it is the hospital. Mama has coded. I go get daddy, call my brother and we head back to the hospital. I hit the button to CCU and enter. They try to get us to go into a room. I am not having any of that and daddy tells them he is going to stay with me. They get daddy a chair and I go to mama’s room. There is this big male nurse up on her bed just pounding on her chest with CPR. I see my mama’s face and I know that she is gone. I tell them to stop, she has had enough. They did and stated to let them get her cleaned up for us to visit with her. I go back and tell daddy. About that time my brother enters the CCU area. Our eyes lock and I shake my head no. So, we wait to see her. Daddy sits beside her and holds her hand. My brother is on the other side, standing beside the bed. I am across the room leaning on the air conditioner. I don’t know how I feel. I see her and I see daddy with her and for the first time in a long time, I can see that he truly did love her. It wasn’t just a “have to deal with this because we are married.” The things he said and the way he talked about her. Daddy was always good about jokingly pestering mama and aggravating her, but to actually speak about feelings and emotions, no way. I mean, they were still taking showers together when I was a senior in high school. He always called her Jake and she called him Heavy. If they were mad at each other, they would use Alice or Jack and do the silent treatment for a few days.
We met on Saturday or Sunday to do the obituary and set the time for the service. It was Labor Day weekend 2005. They had already pre-planned and pre-paid for their funerals. It was great. You sure do not feel like making all of those decisions. We had the receiving of friends and service on Labor Day evening and internment the next morning, I think. I get the days mixed up because she died shortly after midnight.
Here we are at the receiving of friends and quite a few people show up. We would talk about the past and the “trouble” she would cause and get in to. Reminisce and tell funny stories. Later on, when I went back to work, one of my techs who came to the funeral said, “I don’t know how to say this, but your mom’s funeral wasn’t sad.” She had never been to a funeral that wasn’t sad. No, it wasn’t a sad funeral. She was loved. She was missed and she is still missed. I have no doubt that she is in Heaven and she is fine. We are the ones that are sad and miss her.
I didn’t realize it at the time, but I had begun grieving the loss of my mama after her MS diagnosis and during her decline. We only had to deal with a hospital crisis for a week and I know the stress and anxiety that I dealt with regarding needing to be at the hospital, needing to be at work and needing to be at home for my family. You can do it all for a short time, but not for long. You will have to choose and that is okay. Someone or something is going to get slighted for a while. The big problems arise when the others in your life feel left out, ignored or let down. In other words, their needs are not being met and their tank is empty. Oh crap! You feel that your tank has been empty and you have nothing left to give. You can barely keep doing your job, much less what you need to do at your own home. Teamwork and sharing are a good thing. Taking time out for yourself to relax and recharge is a good thing.
I believe that what caused my mom’s death was either of two NSAID medications that were pulled from the market. Vioxx® and Bextra®. Can I prove it. No, but I do believe they hastened my mother’s death. I understand all about medications, approval and the last phase of testing is when it is released to the general public. Now we know to monitor kidney function earlier. I don’t want another family to have to go through what we went through.
I started my consulting business to help folks have options, to double check on their medications, and treatment plans. To prevent the preventable. Now we have the genetic testing to see if a medication will work for you or not. We know that the families of patients with chronic health conditions such as Alzheimer’s disease. Parkinson’s disease. MS, Migraine, Chronic pain, Fibromyalgia, Depression, and Arthritis need to be heard, understood and find things that work for them. When you are in the big middle of things, you cannot think logically you are just too stressed. Sometimes you have to make a decision based on what you would regret the least. Are you frustrated, angry and just plain mad? Maybe, I can help and there are solutions.
Imagine what your life and the life of your loved one would look like if you were a better equipped manager for your loved one’s health care needs. How much less stress you would be under. How much more energy you would have to do the things that you want to do. If you want a plan of action to improve your life and the life of your loved one let’s chat. I won’t know if I can help you unless we talk. If I am the right one for you, I will tell you and if I am not the right one for your needs, I will try to point you in the right direction.