So often we talk about the stressors and negative consequences of helping a loved one. But, what about the positive things that can happen? There actually are some benefits.
Care giving is full of ups and downs. Every day may be different. Different is not always a bad thing. You may even have more pleasant days than bad days. I know, some of you are thinking that pleasant days are not what you experience. I get it, not everything is going to be pleasant.
Think back to a rough day. One where it took you three hours to get them dressed and fed. Maybe, it was a day that they did not recognize you and they balked at every turn. It gets emotionally draining. We tend to remember all the problems and struggles that we deal with. Why? I am sure our amygdala has something to do with it. LOL. Look, we remember it because it messed with our plans. We hit a resistance or barrier of some kind. Did we shift our focus or try another way or even try again later? Nope. We pushed through and made it happen. What was left in our wake? Wasted time. Hurt feelings. Frustration. We just reinforced all of the negative feelings. We forgot to focus on the small victories. They can still get dressed and they can still eat. They can still get out. Your unmet expectations are what really caused the “problems.”
While we are focusing on a dementia or Alzheimer’s related issue today, it could be any chronic health condition that causes a decline in our loved one. A physical decline and/or a mental decline happens in a lot of other diagnoses.
I wish that I could tell you there are predictable patterns. It all depends on what area(s) of the brain are affected. Their brain is failing. You may experience a problem with the bathing issues and someone else may be dealing with the 500 questions a day issue (the same 500 questions). Maybe, they are still quite mobile and wander off, repeatedly. You must realize that all of these behaviors are UNCONTROLLABLE for folks with dementia. Alzheimer’s is the most common dementia. Analyze your own response to the frustration. See what you can modify or change to make the process go more smoothly. If you find yourself getting more and more frustrated, it is past time for you to take a break.
Next time, focus on what they can do. See what they can do for themselves, even if it takes longer. What would you consider a success, taking their limitations or bad days in to account? Go in with a smile and a warm fuzzy feeling in your attitude. They will pick up on that. Spend a few minutes talking with them. Touching them gently on the arm or shoulder. Use the phrase, “we are going to _____________ now.” One thing at a time. One arm at a time. Speak to them and tell them what “we” are doing in a calm, loving voice. Take a break, if they need to. You will still complete the tasks much easier and faster if they are helping and not fighting you. How ever long you think it should take … multiply that by 4. That is your timetable.
It will be in the small things that you will see what you have accomplished. Their calmness and trust will be so amazing. Even if they are no longer verbal, they sense emotions and do it quite well. They may look at you and not know your name or maybe not even who you are. But, they know that you are someone that cares about them, that loves them because they sense it.
You have a purpose. To help someone that you love have the best quality of life possible for them. It feels good to have a purpose. It feels good to help someone that you love. They have helped you and now you get to help them.
You being there is important. None of us want to be alone. Your time, effort and attention provides comfort to them. I hope that brings you comfort and joy.
You find yourself talking with them. For the first time, in a long time, you are having a real conversation. Telling and listening to stories.
You will be changed by this experience. Maybe you figure out what you want and what you do not want when you reach their age. Maybe you see the things that you need to take care of now, so your kids won’t have to struggle to find the information needed.
You probably will never receive an award for being a helper or care giver to your loved one. You may never even be appreciated. You may never be acknowledged for what you do or what you have sacrificed. Did you really do it for the accolades? Probably not, but some people do.
What if you haven’t been close and they need you now? Could this be a time of mending fences? Could this be a time of moving forward? What about resolving old hurts or negative feelings?
Care giving can teach you a big lesson about control. As in, you are not in control and you cannot control the outcomes. That, sucks! It is a lesson that we all need to learn. We can do our best. We can make plans. We can implement the plans. But, we have no control over the outcome.
Your own kids are watching you. They are watching how you act towards your mom, dad, spouse or partner. They are listening to what you say. They are observing what you do and how you handle problems or stressful situations. You are modeling for them what to do and how to act. Your attitude towards your loved one may very well become their attitude towards you when you need their help.
Even with all of the positives of helping a loved one … we all need to take breaks to rest and recharge.
At first, it did not take too much time or effort to help them. Your mom needed a little help with running errands and doctor appointments. Your dad needed some help with cleaning the gutters or getting the oil changed. Your wife needed help getting to her hair and nails appointment. Your husband needed help with mowing the lawn and going to the barber. Nothing major and it didn’t take too much time or effort to help them.
As the months fly by, more and more is required of you. More of your time. More of your effort. More of you moving your schedule around. At about the 18 months mark, you are getting a little tired. You are beginning to feel more and more frustrated. You have had to miss work. You have missed your kids school functions. You have missed your kids’ ballgames. You look up and realize that you have not seen your best friend in months. You have not been out to eat in a long time.
Your body is aching. You are tired. You realize that you have not been doing your favorite activities that keep you in shape or keep your stress level down. Walking, running, swimming, weight lifting, yoga, playing cards, gardening, reading, etc. You try to think back to when that all stopped. Maybe you remember, maybe you don’t because it was a slow process.
When was the last time I saw __________________? When was the last time that I had any fun? When was the last time that I spent a weekend with my husband, partner or family? When was the last time that I spent time with my wife or partner to reconnect? Hell, when was the last time that I had time to myself to do what I wanted to do?
About the 18 months to 2-year mark, you usually need help. Sometimes, things are going well and you just need a break. Sometimes, things are not going well at all and you don’t know what to do to make things better. This is usually the time that I am called in and we troubleshoot, create plans of action and get the support system up and running.
Everyone needs a support system. It would be best to gather all of those folks at the beginning. Why? Because, eventually you are going to need them, their talents and their help. Don’t wait until there is a crisis to figure out who is good at what. Don’t wait until there is a crisis to find out who is willing to provide hands-on help and who is willing to provide other services such as running errands, doing the laundry, cooking meals, mowing the lawn, cleaning the house, etc.
If you ask people to do what is uncomfortable for them to do, they will do one of two things. One, they will decline to help. Two, they will do it, but they will resent it and will find ways to never have to do it again. Not everyone can or should provide the hands-on care. Maybe they are comfortable with hands-on care up to a point. Find out what that stopping point is! Mine is the toileting and bathing habits. I am not too good at sitting with them for long periods of time either, I preferred to get out and about with mama and she preferred that too. I used to beat myself up for not being able to do the toileting and bathing things. I certainly loved and cared for my mama. I wanted her to have her needs met and have the best possible care. I had to realize my strengths and my weaknesses. I had to understand that it was not about me, it was about what she needed and who could best provide those things.
I can do any of the medical stuff but, I cannot do the toileting or the bathing stuff. Isn’t that strange? Looking back, I had medical know-how and training, but I never had training for daily care. Maybe, that would have made a difference. In my case, I don’t think so. I do believe care givers need to be trained in helping with the activities of daily living. You can hurt your loved one or yourself if you do things incorrectly. Care giving is hard work. It is physically demanding. It is emotionally draining. It is mentally taxing.
We sure do it though, don’t we? Even if you provide hired help or see to your loved one’s care, you are a care giver. Even if you are hours away or states away and you see that their needs are met, you are a care giver. We see ourselves as helpers and not as care givers, but we are care givers. Why is that important? Because, being a care giver has health consequences for us. Being a helper or a care giver impacts our entire family.
Asking for help is necessary for good care. It is good for the care receiver and it is good for the care giver. Why do you need to ask for help? Because at the beginning, folks did ask you how they could help you. You didn’t really need the help then. They would keep asking for about a year and then they would stop asking. Why? It wasn’t because they no longer wanted to help. It was because, every time they asked, you said no. So, they stopped asking. They figured, if you needed help, you would let them know. You needed help, but you did not let them know. You are so busy. You are stressed. Take a breather. Be open to the possibility that others are willing to help. You make that call and state what you need. Yes, state what you need. Be specific. If they can, they will. If they can’t, they won’t. Call the next person and state what you need. For example, I need mom to be taken to the hair dresser on Thursday at noon, to the grocery store after that and stay with her until 4:00. Not, can you help me with mom on Thursday?
By stating what you need, you have given them the opportunity to see what needs to be done and if they can make it happen. Maybe, they can do all of it, maybe they can do the hair dresser and grocery store. It is much easier to decide if you know what will be expected of you and the time frame. It is always the unknown or ambiguous that will cause us to hesitate and probably say no. Another example is that you need someone to sit with your mom for 6 hours on Saturday. Don’t ask if they can sit/stay with her for 6 hours. They will freak out. They don’t know what to do with her for 6 hours. Give them some activities to do. Lunch out, if possible. Watch a movie, play cards or a board game.
Use “I” statements. I need a break to take care of my stuff. I want you to _______. Try your best not to use “You” statements. That is a fight or hurt feelings just waiting to happen. The word “you” gets everybody’s back up and on the defense.
Maybe you do need them to sit with a loved one who is unable to do much of anything anymore. You still need to tell them how to be helpful. Give her 2 oz. of water to drink every hour or so. Tell them that she will need to be prompted to drink. Tell them when and what to feed her. Tell them what medications they need to take and when. Let them know her schedule, TV shows, nap time, etc. Let them know that they need to check on her every hour and that they can watch TV, watch a movie or do their work. Maybe, they need to hold her hand or just be in the same room with her.
Tell them what to expect. Sure, you know, but they do not know. They want to help and they want to do it right. It would also be helpful to give them a phone number of someone else to call, if they have questions. NOT your number, someone else’s number. You are taking a break.
Look, the more you have prepared them, the more likely it will be a success for all involved. The more successful it is, the more likely it is that they will help you again. Win-win-win. You win. Your loved one wins. The helper has helped you and feels good about that because they care about you.
The helper will not do it exactly like you do it and that is okay. There are always more ways to do things. Don’t be a micro-manager. You trust them to stay with your loved one so trust them to handle the tasks.
Why is it so hard to ask for help?
You are having difficulty trusting someone else to do the job “right.”
You won’t let go of the need to control things
Guilt over leaving the person in someone else’s care
Worry over the quality of care if you are not there from day to day overseeing everything
You may be too overwhelmed to ask for help
You think that you are being selfish if you put your needs first
I promised my father that I would always take care of my mother
I am responsible for my parent’s health
If I do it right, I will get the love, attention and respect that I deserve
You feel inadequate if you ask for help
My loved one refuses to let anyone else help & guilt trips me
My siblings are jockeying for power
Change your mindset
Realize that asking for help is smart. It is not selfish. If you burnout, who will be there to help care for your loved one? Give yourself permission to enjoy your own life. Realize the importance of taking care of your own health (physically, emotionally and mentally.) Understand that a break is essential and not a luxury. While this is easier said than done, turn off your care giving mind. A few hours of reconnecting with others, a dinner out, a long hot bath and sleeping in your own bed, can do wonders.
Asking for help is necessary for both you and the care receiver. See, it is not all about you.
Some tools/tips to help you ask for help:
Have a list of people to call
Have a list of needs/projects to be handled
Consider the person’s strengths when asking
Ask different people, do not use the same person each time
Pick the best time to ask for help
Be prepared for refusals
Understand their hesitancy
Don’t take it personally, when someone you have asked cannot help, this time
Be assertive, but don’t be an ass
Our emotions exist for a reason. They let us know when something is out of whack or off kilter. Learn from them. Don’t push them down, don’t ignore them, learn from them. Even if you push them down, they will come out in other ways. If you are providing care for a loved one you will experience many different emotions. Emotions are not wrong or bad, they just are. Be curious about them, ask why you are having this emotion or feeling? No judging! Maybe some of your emotions are telling you that you need to make a change in your care giving situation. You have probably begun the grieving process. You are experiencing an increase in stress. That it is time for you to ask for help. It is time to be assertive.
Who are the 5 people you will contact?
What will be on your list of chores/projects?
What days and times will you need a break?
Write it down. When will you complete these lists? Write it down. When will you start making these calls to get people on board? Write it down.
I am the husband of a woman that has breast cancer.
I am the partner of one that has complications of diabetes.
December 22, 2021
You find yourself helping your mom with grocery shopping, taking her to the doctor, and having her hair done. You find yourself helping your dad by mowing the lawn, cleaning the gutters, and cleaning the house.
Maybe, you are doing their errands, laundry or going to the bank for them.
No big deal, it is just what you do for family. They took care of you when you were younger and now it is your turn to help them.
Health issues arise. Both physical and mental. They are no longer the independent, self-sufficient person that they once were. A part of you thinks that this is temporary, but the other part of you knows that this is the beginning of a decline in someone that you love.
We talk about parents and their needs, but it could be a spouse or partner. A life-altering tragedy has occurred and now you are helping them. You still have the same responsibilities you had before with your own job and your own health needs. Don’t forget about your civic responsibilities, church activities or friendships.
Over time, their needs take up more time and effort. Your free time becomes less and less. There will be times that you cannot take care of your own things very well as you are helping them with their things. It happened slowly and you didn’t really notice it until something like an unpaid bill smacks you in the face. You beat yourself up for missing the due date. You have never missed a due date before. Oh crap, I have had to take money out of my savings to pay some of my bills. Oh yeah, I had to miss a week’s work. When was the last time I ate dinner with my kids?
I need a break; you think to yourself. But, how and who will step-in?
It is about this time that you start to look around and see how much time your helping has turned in to over these past couple of years. You start wondering and evaluating what has been happening and what would be best.
Questions to ponder:
Is what I am doing for them necessary or can they do it themselves?
Are you doing these things so others will sing your praises?
What can be delegated to other people?
Are you trying to exert control over a situation that is uncontrollable?
Are you feeling guilty?
Do you feel resentment building up?
Are you open to others helping?
These are hard questions. These are necessary questions for you to answer to help you realize where you are and how you feel. Maybe you have some guilt trying to run your life. A little guilt is good for us. It makes sure we are doing things for the “right” reason. When you start the “Should” in your thoughts and sentences, watch out. Big guilt heading your way. “Should’s” need to be stomped out of our vocabulary. That would stop a lot of the guilt. Are your “should;s” coming from what other people say? You could say, I can’t do that, but you are more than welcome to do that.
You are not all powerful. You are not all knowing. You do have options. Be open to seeing the possibilities. What do you want to be? What do you want to take care of? What are you good at? Your own attitude towards situations do make a huge difference in how you feel about a task.
Set certain days for certain things. Example, Medical Mondays – all appts. Need to be on a Monday morning. Grocery store Thursday evenings. Find the day and time in your own schedule that will work for you.
People are usually willing to help. However, they cannot read your mind. Make that list of things and keep it ready. Pull it out and sign them up. Need a meal fixed, put it on the list. Does the yard need to be mowed? Put it on the list. Laundry? They can pick it up and bring it back when they are finished. Do you need a “go-fer” for the day? Add your errands to the list.
Your new normal does not have to be awful. Your new normal does not have to always be stressful. Your new normal does not have to take over your own life. Your new normal does not have to cause resentment
Your new normal can be a blessing. Your new normal can bring your whole family closer together. Your new normal can help you learn to delegate better. Your new normal can help you to communicate better. Your new normal can be whatever it becomes because you are open to the possibilities.
Some of you are breaking out in a sweat right now. WTF! I can’t let it be. It will be a disaster. He won’t do it like I do it. It will be a mess when I get back. If I don’t tell them what to do, they won’t do anything. And many, many other statements.
What to deal with first?
Let’s start with the control freak or as I like to call them, the person that “likes to take charge.”
Who are you and why are you a control freak? Usually, a control freak is driven by an urge that they want everything done in a way that THEY feel is correct. Sometimes, it is because the control freak does not have control in an area of their own life and they will seek to control something that they feel they can control. It is also possible that the control freak has an obsessive-compulsive disorder, an anxiety disorder or possible a personality disorder. Sometimes, it is the person that has been through it before and has the experience. Other times it is the person who will step up and handle the situation. So, you see, there may be many factors as to why a person seems to be a control freak.
If you are the control freak, check yourself before you wreck yourself and your relationships. What are the real reasons behind your behavior? Is it truly to help the other person or is it for your own benefit? Do you trust others to handle situations as they arise? The better question is, will you trust others to handle situations as they arise?
Being effective does not mean you always have to control things, people or the situation. The reality is that we cannot control things, people or situations. The only thing that we can control is ourselves and our own views. We can’t control the outcome. We can control our mindset. We can control our work ethic. We can control how we treat others. No, they don’t make you treat them any certain way, you choose to treat them a certain way. We can control what we eat, how much exercise we do, how much rest and destressing we do. We can control asking for needed help before we get to the end of our rope. We can control what we focus on. Know that what you focus on shapes what we do and how we feel. Will you focus on possibilities/solutions or will you focus on the problems?
I have heard this phrase a lot, but I could not understand it for the longest time. “Let it go.” How in the hell do you let something go? You still think about it. You still wonder. You even still try to fix it. I finally read something that helped me to understand what “let it go” really means. It means to “let it be.” Let it be just as it is, right now. There is nothing to do but accept it as it is, right now. You don’t have to like it. You don’t have to fix it. You don’t have to feel a certain way about it. I know realize why I have always hated the phrase, “it is what it is.” I hated it because it frustrated me and because I could not accept that “it” could not be changed. Only accepted, as it is, right now. I didn’t have to like it. I didn’t have to fix it. I didn’t have to do anything.
It’s funny, when I stopped fighting the things that were not going to change and changed how I reacted to them I was much calmer and more at peace. I had to learn that it was my own reactions that were hurting me. I had to decide what I will accept or put up with and what I could not accept or put up with. Decision’s time!
Things you CANNOT Control:
If people like you or dislike you
Other people’s feelings
Other people’s thoughts or beliefs
Other people’s actions
Who our relatives are?
The exact outcome. Of anything. Ever.
If it is not an immediate danger. Cool your jets. If death is not imminent, wait. Sometimes, things need to work themselves out. A few failures are a good thing. They are learning times. Failure is an event and never a person.
Be the flexible, can-do person. Understand that plans change. Priorities change quickly. Adapt to making the best decision possible with the information that you have, right now. Update as needed.
Have no attachment to the outcome. Calm down, you have to learn to be in the present moment. There may be so many factors that go in to an outcome and we cannot control all of them. Be open to possibilities and outcomes, just don’t become attached to them.
Learn to accept change. This is so very hard. We are creatures of habit. That is not a bad thing, it becomes very frustrating and maddening when we do not make allowances for things beyond our control. Work on focusing on the top three priorities. Focus on the things that matter the most and let go (let it be) of the other things. Stop trying to change the unchangeable. Just because we accept “what is,” does not mean we give up hope or stop trying for the best quality of life possible.
What if the care receiver is the control freak?
When the strength and courage that you admired in your parents has now changed into control freak behavior, how can you handle them and it? You will be provoked. You will be angry. You may hear constant complaining. You may even feel like a servant sometimes. Annoyed, Frustrated, Resentment and Anger coming up! Sadness will be there too. Watch out for your triggers to be triggered.
Manipulation by elderly parents:
They may guilt trip you
Nice to your face but talk about you to others
They want everything done in a specific way
They complain about family members, nothing pleases them & everything you do is wrong
Easily becomes upset at just about anything
Why is this happening?
It may be their nature and they were always this way. It could be a new thing that has happened over time. Usually, they are trying to regain some kind of control over their lives and situation. The loss of personal power and control is awful. It is sometimes scary to have to depend on someone else for your needs.
Have them do everything that they can do, even if it takes longer. Let them make decisions, whenever possible. Ask for their opinion and advice. Everyone wants to feel useful. Don’t force them on to your schedule for the more intimate needs such as bathing. Let them decide on that time. It may only be an inconvenience to you, imagine what it must be to them. Let them keep their dignity and I promise you will have fewer battles. Of course, you may have to set boundaries and that is fine. Put yourself in their shoes to understand where they are coming from and do your best to accommodate them. We all want autonomy and independence. It may be time to bring in the backup care givers.
As a care giver, you are there to provide them with help with what they cannot do. Your role is not to take over but to become more of an aide or helper. Encourage them to do all the things that they can do, even if it takes longer. Family dynamics will certainly play a role in a care giving and care receiving need. Everyone has a right to feel safe and to be safe.
Routines are good things. Once we have our routine, we no longer have to use excess brain power to figure things out. We just do them. Routines are good for care givers and care receivers. Figure out the best routine (one that is doable for the receiver and the giver) and implement it. Update, when needed. Agreement is the key. The care giver must be more flexible than the care receiver. The more you can fit in to their routines, the less pushback you will have. Remember to enjoy each other. Those are the moments that you will treasure.
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.
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?
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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.