Category: #caregiver

When you assume, be prepared for the boom!

Have you ever asked your care receiver what they need the most?

January 19, 2022

You have guilt. They have guilt. But, neither of you is talking to the other about those feelings. In fact, neither of you has talked about much of anything with regards to being a helper and being a care receiver.

I always remember the word, assume. When you assume, it makes an ass out of you and me. Ass/u/me. I have been an ass, quite a few times and not always by assuming. But, a lot of times, I have assumed, and I was so very wrong. Don’t let that happen to you. Assuming does cause misunderstandings. It does cause heartache. It can even cause hurt feelings.

How could my assumption be so wrong?  I made the best decision that I could. My heart was in the right place. I know this person. Why was it so wrong? Everyone does not think like me. Not everybody has the same wants or needs as I do. They don’t have my life experiences or the same goals that I have.  I’m perplexed. I’m a little sad. I feel a little unappreciated for my efforts. I am a little pissed.

Have you ever felt that way, you make decision, and it did not turn out as you had planned? It flopped. It was bad. It made more of a mess.

The key is, “as you had planned.” You didn’t ask anyone else for their input. You didn’t ask your loved one what they wanted or needed. We assumed. The decision blew up and caused hurt feelings. We misunderstood. But we are not going to admit we were wrong. We will double down on our interpretation and beliefs. Hello, ego and pride. You can’t back down and admit you messed up. Even when the other person tries to clarify what they wanted … our stubbornness or rather our pride bows up and will not listen.

The ways that we know about something, or someone are:

  1. The things that we know for sure
  2. The things that we do not know
  3. The things that we think we know

Think about it this way. You are having a conversation and somehow your loved one tells you that they like flowers on the table. In your mind, they like roses because you like roses. You didn’t ask them what kind of flowers they liked. You assumed they liked roses and you bought roses for the table. Instead of getting the praise and acknowledgment that you think you deserve, you get a “those are nice.” In your head, you are going off. You say something like, “I thought you liked flowers for the table.” They respond, “I do, I prefer tulips because they are my favorites.”

You are the one that assumed roses. You did not bother to ask what kind of flowers are their favorites?

You are sent on an errand to get loaf bread, peanut butter, coffee and milk. There are no brands listed and you didn’t bother to ask. Each of you assumed that the other knew what brand to get. How do you think that worked out? You got white bread, Peter Pan peanut butter, JFG coffee and soy milk. Why? Because that is what you use. Bad move. They wanted whole wheat bread, Jif peanut butter, Folger’s coffee, and 2% milk.

See what assumptions do? Everybody is mad. Each of you is blaming the other one for not “knowing” what to get. To avoid all of this anger, frustration and hurt feelings, take a minute to ask a few questions for clarification.

Communication and listening for understanding would have gone a long way in preventing this mishap.  Making assumptions is asking for problems in any relationship. None of us are mind readers.

We all make assumptions even when we don’t know that we are doing it. We view things thorough our own perceptions, and they are not always accurate. We have biases both known and unknown. We think that our experiences are the same as other people’s experiences. We don’t challenge what we think we know to be true. Maybe, we heard it and accepted it as true. It was not true. Check your facts from trusted sources. What if we are stuck using information from a past experience?

Hang on, what comes next are short, informational blurbs. Things to make you think. Things to help you understand.

What if the helper and the care receiver would communicate better? What if they could each state their needs and their wants while working together for the best outcome possible? If you cannot talk to each other without getting into a fight, maybe try writing it down on a piece of paper. Listen for understanding. Take 10 seconds to think or process before replying. State back to them what you heard and ask if that is correct?

As the helper or care giver, do you know how your loved one or care receiver feels? Give up your need to control. You are the helper. It is hard enough on the care receiver to admit that they need help. For them to realize that they are no longer independent is devastating.

Take a breath. Talk with them about the past, the present and even the future. Talk with them, do not pepper them with questions. As the dementia progresses, you will need to give them two choices, but at first, you let them decide. Offer to help the care receiver. Sure, they move slower, but take them with you to the grocery store.

If your loved one has been a giver their whole life, it will be hard for them to be the receiver. They are not used to receiving. It will be a learning process for them. Remember, everyone wants to be useful and feel useful. Imagine how you would feel if you could not do everything for yourself and you had to depend on someone else’s help. Will you be angry? Will you rant, rave and rage against help? Will you be open to receiving help, with gratitude? To realize that there are some things that you can still do for yourself. Our identities get wrapped up in what we do for a living or our role in our family life. Who are we if we are not a __________?

We all must answer that question. Be kind to yourself. You are loved, appreciated, and admired for who you are as a person. Not what you do.

The feeling of becoming or being a burden to our loved ones, makes all of us a little crazy. Almost all of us will help without a second thought, when needed. We do it and never think a thing about it. However, when it comes to us receiving help …that is a horse of a different color. Nope. We are not having it!

We all want our dignity to be left intact. We deserve that our dignity be left intact!

Helping or care giving is full of contradictions and even competing thoughts. It is the same for the care receiver. Mixed emotions abound. Can your personalities coexist?

Some people are not cut out to be the “hands-on” care giver. They can make sure that you have “hands-on” care givers to help. They may provide support and help to the family “hands-on” care givers. As I have shared before, I am not the “hands-on” care giver type. I learned the hard way. By trying to do it for my mom. When it comes to personal hygiene, toileting, grooming or transferring, I am not the best person for that. I am not good at it. I could do other things such as, taking her out to eat, to the doctor, to the store or the mall. Do laundry, cook a meal, mow the lawn, pay the bills, talk with her and just be with her to watch TV and play Jeopardy. I felt guilty that I could not do it all. I love her and want the best for her. I had a full-time job, three boys and a partner. I did the best I could. I wished that I could have been there more for her and daddy. Daddy was her primary care giver, and he had both medical and non-medical care giver help a few days a week for a couple of hours. My brother and I could not convince him to get more help. Mama did not want to be a burden to any of us and told us to place her in assisted living when we needed to.  It was never about her being a burden. My mama was never a burden. Daddy was not having any of that and he kept her at home. He had modifications done to the house for wheelchair access and a roll-in shower with a large bathroom area.

Mama was a very strong and independent woman. Everyone in my family can say what they think. We can have discussions, disagree, and even work together. The one thing that we can’t do is read each other’s minds, not that we had to. No one was afraid to express an opinion. When she was diagnosed with MS, she soldiered on. We could always talk about what was going on and the MS. Over the years, she got weaker, and her legs got to where they just wouldn’t work, and she used a walker and eventually a wheelchair. She always did whatever she could still do. I am sure she was frustrated. I never heard her complain nor did I ever hear her say, “why me.” She always faced everything head-on and we moved forward. We adapted, modified, and kept on going. One of my mom’s favorite sayings was, “Do the best that you can do and forget the rest.”

While she had MS for years, she did not need any help until she was about 62 years old. She died at 65 from kidney failure. Other families are care givers for much longer and some shorter. You never know how long it will last. While it is hard and sometimes frustrating, it is also rewarding. You get to help someone you love when they need help. You don’t even see yourself as a care giver. You are helping your mom, dad, spouse, or partner.

If you want to avoid hurt feelings, anger, resentment, disappointment and miserable outcomes due to making assumptions, ask for input/options.

Don’t assume:

  1. That things will go exactly as planned
  2. That help is not necessary
  3. That you are being judged by what you do or don’t do
  4. That you know what your loved one wants
  5. That no one else can care for them properly
  6. That you know everything about your loved one’s conditions
  7. That your care receiver cannot tell how you really feel, they sense emotions
  8. That the care receiver will act the same way as your friend’s mom
  9. That they are not too bad, as they can have social conversations …different lobes of the brain control different functions

Take a look at this information from Mayfield Clinic

https://mayfieldclinic.com/pe-anatbrain.htm

It shows you what part of the brain is responsible for what ….

Lobes of the brain

The cerebral hemispheres have distinct fissures, which divide the brain into lobes. Each hemisphere has 4 lobes: frontal, temporal, parietal, and occipital (Fig. 3). Each lobe may be divided, once again, into areas that serve very specific functions. It’s important to understand that each lobe of the brain does not function alone. There are very complex relationships between the lobes of the brain and between the right and left hemispheres.

Figure 3. The cerebrum is divided into four lobes: frontal, parietal, occipital and temporal.

Frontal lobe

  • Personality, behavior, emotions
  • Judgment, planning, problem solving
  • Speech: speaking and writing (Broca’s area)
  • Body movement (motor strip)
  • Intelligence, concentration, self awareness

Parietal lobe

  • Interprets language, words
  • Sense of touch, pain, temperature (sensory strip)
  • Interprets signals from vision, hearing, motor, sensory and memory
  • Spatial and visual perception

Occipital lobe

  • Interprets vision (color, light, movement)

Temporal lobe

  • Understanding language (Wernicke’s area)
  • Memory
  • Hearing
  • Sequencing and organization

Language

In general, the left hemisphere of the brain is responsible for language and speech and is called the “dominant” hemisphere. The right hemisphere plays a large part in interpreting visual information and spatial processing. In about one third of people who are left-handed, speech function may be located on the right side of the brain. Left-handed people may need special testing to determine if their speech center is on the left or right side prior to any surgery in that area.

Aphasia is a disturbance of language affecting speech production, comprehension, reading or writing, due to brain injury – most commonly from stroke or trauma. The type of aphasia depends on the brain area damaged.

Broca’s area: lies in the left frontal lobe (Fig 3). If this area is damaged, one may have difficulty moving the tongue or facial muscles to produce the sounds of speech. The person can still read and understand spoken language but has difficulty in speaking and writing (i.e. forming letters and words, doesn’t write within lines) – called Broca’s aphasia.

Wernicke’s area: lies in the left temporal lobe (Fig 3). Damage to this area causes Wernicke’s aphasia. The individual may speak in long sentences that have no meaning, add unnecessary words, and even create new words. They can make speech sounds, however they have difficulty understanding speech and are therefore unaware of their mistakes.

Pat

How many times this past week have you felt enervated?

January 12, 2022

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.

Pat

Which caregiver role fits you, right now?

January 5, 2022

Which caregiver role fits you, right now?

  1. Hands-on caregiver – you are physically there and you help with their daily needs (i.e., dressing, bathing, toileting, brushing their teeth, meal preparation and feeding).
  2. Companion care – they can do most things on their own and you are there to provide company, keep them engaged with conversation (emotional support) and make some meals as well as medication reminders and light housekeeping. Maybe, take them to an appointment or on errands.
  3. Long-distance caregiving – you probably live an hour or more away, you may be helping with money management, and you may be in charge of making appointments, finding in-home care assistance, and planning for emergencies.
  4. Accidental caregiver – Oh crap, I did not see this coming, right now. I know that I have to help, but I am not sure what I am good at? I will muddle through.
  5. Reluctant caregiver – you may find yourself responsible for someone who has abused you in the past or that you do not get along with. This one is very difficult and it may be best to find help immediately and place yourself in the long-distance caregiving camp.
  6. A Swoop-in, create havoc and swoop on out caregiver – these folks need an ass whipping. They come in every once-in-a-while, state and do whatever they feel like, without regards to the care receiver or the other care givers and get things stirred up and then they leave. Most likely, these folks are just waiting for the care receiver to die so they will not have to be bothered.
  7. Provider of support to the caregiver – Physically and emotionally help the caregiver to excel at being a caregiver. You help the caregiver with the chores or things that need to be taken care of at their house or the house of the care receiver. (Laundry, house cleaning, cooking a meal or two, mowing the lawn, cleaning the gutters, running errands, etc.)

Some of you have never identified as a caregiver, it is just something that you do. You are helping your mom. You are helping your dad. You are helping your wife. You are helping your husband. You have never viewed it as caregiving, they need help and I will help them. It is that simple.

You never even give it a second thought. That is what family does for each other. I get it, I have been there too. It is what good friends do for each other too. While we don’t identify with the word “caregiver,” that is what we are. A lot of us are the Lone Ranger. We are fine, for a while. We can manage our lives, our jobs, our homes and all of our loved one’s stuff, for a while. Usually, it is about 18 months in and we are stressed out, frustrated, tired and overwhelmed. We look up one day, and wonder how we got here? It happened so slowly and it wasn’t too bad or too hard. But, now, it takes a lot more time and effort to help our loved one.

Our love for them has not changed. Our goals for them have not changed. Our goals for ourselves have not changed. What has changed is our own health. We are tired and we just cannot get rested. Our eating habits are worse, we have gained weight and those stress headaches and lower back pain keep us off of our game. Work is work. It hasn’t slowed down and I am expected to perform at my best every day. I can’t concentrate as well as I used to. I find myself worrying more about my loved one and I can’t remember the last time I had some free time.

What would help you the most in the next three months?

Do you need an easy to use, fill-in-the-blank essential information binder?

The three things it will do for you –

  1. Decrease your stress level
  2. Empower you to be more in control, to make better decisions
  3. Information will be easily accessed when needed

What is included in this Stress Buster, Time Saver, Information Binder:

  1. Banking Information (including retirement information)
  2. Bills – list of and when due
  3. Doctors and other Health care providers list
  4. Documents needed
  5. HIPAA release form
  6. Home information (home, vehicles, rental property)
  7. Income to be received (from Social Security, Retirement, Renters, etc.)
  8. Legal Documents needed
  9. Medical bills and EOB’s (explanation of benefits, with tips and info)
  10. Medical history (incl. diagnoses, surgeries, devices used, etc.)
  11. Medicare and Medicare Advantage Plan (how to check on EOB or MSN for coverages and benefits)
  12. Medications (list of medications, administration check-off list, incl. over-the-counter medications0
  13. Online accounts (User names, Passwords, Answers to security questions)
  14. Tasks to be done sheets

Available as a Binder Kit (with pages in sheet protectors, highlighters, ink pens and a mechanical pencil) 

OR

As a downloadable, fillable PDF file for Single use or Family Use

Use this link for more information and to Order product.

Binder Kit

The next thing that may help you or your loved one is to KNOW whether the medications you are taking are working for you, against you or doing nothing for you. It is a genetic test for medications. You do it once and use the information for the rest of your life. It is a cheek swab. Have your own doctor, physician’s assistant or nurse practitioner order the test (they may use a prescription pad), get it to me and we will get you started.

For more information and a list of medications that have a genetic impact, click on this link

Right Med® Test Kit

Scroll down to blue bar that states Right Med Mediation List and click on that link to see the list of medications.

Services offered are listed under the Options tab. Click on link below to access options page.

Options

Option 1 is for an overview and is available to all.

Options 2 and 3 are researched, doable plans of action using best practices and your individual needs as guidelines. You will be heard and understood. These require a conversation and acceptance as they are customized and detailed.

** I won’t waste my time or your money, if these options are not for you. **

Options 2 and 3 are customized for the individual with researching, troubleshooting and support plans for the individual and the family.

The difference in Option 2 and Option 3 – Option 3 includes follow-up for three months instead of one month. With Option 3, updating the support plan is included. I am your guide and will help you to keep moving forward.

My goal with Option 2 or Option 3 is to help you have an understanding of your options, what you may be facing in the future and how to be as prepared as possible. To have the information that you will need to make decisions and choose the best options for you and your family.

Who do you know that could benefit from any of these products or services?

I need your help to get the word out about these products and services. I want to help those that need these things. If I can make their journey less stressful, that is what I want to do. Please pass along this information to those you know. Thank you for your time and effort.

All products and services are available throughout the U.S.

Pat

Will you ever be okay with being wrong?

How many better decisions could you make IF, you felt it was okay to be wrong?

December 29, 2021

Okay to be wrong? Nope, I can’t even think it, much less say it out loud. For those of us that are “recovering” perfectionists (Remember, I am a work in progress.), still have a hard time believing that being wrong is okay.

Trust me, I know that making a mistake can be deadly. That was drilled into us at pharmacy school. But, not every mistake will be deadly. It may cause some harm or no harm. None of us want to hurt another person, we are here to help you to get better. To thrive. My yearly average was pretty good. Some years, I made no mistakes and some years, I made one. It sucks to have to write-up the incident report. Thankfully, mine was never the wrong medication. Wrong strength, wrong dosage form (tablet instead of capsule), incorrect directions, wrong doctor name, wrong original date, wrong quantity, all count as errors or mis fills. Every mistake and every incident gets written-up and sent in to corporate.

I hate making mistakes! I get angry at myself. I replay the incident over and over in my mind. Sometimes, I can figure out what happened and sometimes, I cannot. If it is a procedural error, such as disruption with a phone call or a customer at the window, then we can put things into place to mitigate those disruptions. If it is a look and mis-see error, usually you cannot fix that. Once you have “seen” drug, names and directions, you tend to see the same thing every time that you look at the prescription and the label. That is why it is best if a technician types in the prescription and the pharmacist checks it with fresh eyes. You always want at least two sets of eyes on it. I did not really mean to go this deep on this.

The point is, if you can identify a “fix” or a better way to do it next time, then you have learned something and most likely you will not make that same mistake again. You have learned and moved forward.

Isn’t that what is best for all of us? But, no, we keep beating ourselves up for past mistakes and errors. If we do that long enough, we will never make another decision that may impact someone else.

What if we could, be a little kinder to ourselves and allow ourselves to learn from what went wrong? Learn from what did not work? We catastrophize, we imagine the worst possible outcome of an action or event. For example, “If I flunk this test, I will fail this course, I won’t graduate and I will be a failure in life.” Another one is, “If I don’t recover fully in the first two weeks, after surgery, then I will never get better and I will be in pain or disabled the rest of my life.

97% of the time, none of that is true. You keep studying and doing better in your class. If you fail, you will have to re-take it, and then you will graduate. Healing takes time and you do get better as time goes on. You do have to do your part with rehab, moving and taking your medication as directed. Your pain will lessen and you will be able to get back to your activities.

I guess that we all need to catastrophize occasionally. Maybe, it keeps us on our toes? If you are going to catastrophize, then you have to go all in with your thinking. Ok, the worst has happened. Now what? Keep going.

What if we don’t catastrophize? What if we stop the automatic negative thoughts that come to us? What if the negative thinking is hurting you more than it is keeping you safe? If you always look for the bad or the worst, you will find it! The opposite is also true. If you look for the possibilities or the good, you will find that too. Stress and anxiety really does play a part in how we think about things.

You are right, sometimes things will get bad. But, not everything gets bad. We don’t deny reality, we do our best to accept it and provide the best quality of life possible. I will never give up planning and hoping for the best. I have learned that it is okay to make a mistake. It is okay to make adjustments. It is even okay, to try another approach. Trying is never failing. F.A.I.L. – First Attempt In Learning

It is our own screwed up mindset that keeps us afraid and that fear of failure rears its ugly head. Our self-worth gets tied up in to how well we perform. Think of a baby that is learning to walk. How many times do they fall? How many times do we tell them, “You can do it?” Or “try again?” They are learning something new and it is going to take a little time for them to learn. What would happen if the first time that they tried to walk and fell, they just sat there and cried and never tried to walk again? We would take them to their doctor to find out what was going on. We would think, “Ok, they fell, but they can try again and again and soon they will be able to walk.”  We will even help them to get up and move those legs.

Have you ever been pushed to explain your reasoning? Even when someone is curious and really just wants to know, we get all mad and start defending our position rather than explaining. That conversation never ends well, does it? What if we can be curious and wonder about our choices. What options have we thought of? What options could be found if we talked with others?  Don’t guess. Don’t assume, ask questions when you do not understand. I like to use a round table discussion where everyone is helping to brainstorm. Everyone throws out their ideas and nothing is ruled out until after the brainstorming session has ended.

None of us is very comfortable being critiqued. If you work for a company, then you will have a yearly evaluation. Sometimes, they are not pleasant. It is not that they are bad or really even negative, just some things that we need to improve. When we realize that we are receiving feedback to help us to become better and more efficient, we tend to accept the information easier than if we think we have done something wrong. Don’t let your automatic negative thoughts run away with you. Take a minute or two and assess the situation. The people around you want you to succeed. If they don’t, then find new people to be around.

I guess we did chase a rabbit or two during this blog.

Let yourself be open to learning new things. If you are wrong, admit that you are wrong. I promise you; it won’t kill you to admit such a thing. I have done it myself and it did not kill me. In fact, when I stopped trying to be perfect, most decisions became easier to make. They turned out quite well, too. I am smart enough to know when I don’t know. I find others that are smarter than me and I ask questions. I learn new things and new ways of doing things.

When you are right, don’t be an ass. Tomorrow, you could be wrong. Do you want to be right or do you want to be happy? Decide if you want to be a leader or a follower. A leader will take charge and make a decision after considering the current options. A leader knows when they have made a mistake. A leader will say, “I have messed up. This did not work out as I had hoped. Let’s try this.” A leader will say, “We made a good choice and things are working out nicely. Thank you all for your input.” When we admit our mistakes, we make it easier for others to admit theirs. Being wrong does not mean you are bad. Being wrong does not mean you should feel shame. Being wrong is just a thing that happens sometimes.

If you try to avoid mistakes, maybe you are not open to learning new things? Making mistakes does not make us a failure. Failure is an event and never a person. I wanted my techs to check me. I always told them that I had rather they be wrong than me be wrong. We need to challenge things that we think are wrong. They may or may not be wrong, but we need to find out. Question when you do not understand. Something new takes two, three or five times to hear before being understood.

Admit your mistakes. Look at the new skill you will learn. Resilience is what you learn when you get back up and try again. Resilience is one key to succeeding. You will not like making a mistake nor should you, but you do need to accept that you have made a mistake.

When you make a mistake what will you do? Will you pretend that it did not happen? Will you point the finger at someone else? Or will you take responsibility for your mistake and learn from it? Will you forgive yourself and move forward? If someone else makes a mistake, will you empathize with them instead of blaming them?

Besides, when you admit your own mistake … no one can ever hold it over you.

Pat

Who are you? Who are you helping?

I am the daughter of a dad with Alzheimer’s.

I am the son of a mom with Parkinson’s.

I am the wife of a man that has had a stroke.

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:

  1. Is what I am doing for them necessary or can they do it themselves?
  2. Are you doing these things so others will sing your praises?
  3. What can be delegated to other people?
  4. Are you trying to exert control over a situation that is uncontrollable?
  5. Are you feeling guilty?
  6. Do you feel resentment building up?
  7. 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.

Pat

More thinking is not always good thinking.

3 Things to do when you don’t know what to do.

December 14, 2021

You are in a crappy situation. You don’t really know what the right decision is, but you know that you must make a decision. Your jaw gets tight from clenching, you start shallow breathing and your mind goes a million miles an hour. Scenarios play out inside your mind. You start whittling down the “absolutely not,” choices and still you are left with a bunch of options. Dammit! If you could just see the end result. You can’t see the end result nor can you see all of the twists and turns ahead.

We have talked before about making the decision that you will regret the least making. This time, it is a little different. These are not so much possibly life altering decisions, but more of the day-to-day types of decisions. The annoying ones that just pop-up and seem to need some kind of decision made. Grocery shopping, haircuts, unscheduled trip to doctor, repairman coming to the house, and other daily decisions that take up a lot of our time. See, another good reason for having a routine.

Do you make a to-do list and then take 30 minutes figuring out what to do first? Are you flipping through channels for 20 minutes trying to find something to watch? How long does it take you to figure out what you are going to wear? Are you naturally an overthinker? Now add in someone else’s stuff and see how long it takes you…

Whew! Decision fatigue is about to set in. You know that you only have so much brain energy to use every day.

The 3 Things to do when you don’t know what to do:

  1. You must decide if it is Fear based or doubt and uncertainty based. If it is fear based, no decision-making for you.  Fear triggers a physical response. Your stress hormones are released, your heart rate increases, your blood pressure increases, &you begin to breathe faster. Your fight, flight, freeze or fawn has been activated. Your brain has been hijacked and you cannot physiologically make a good decision. The part of your brain that does the reasoning and judgement no longer works well. Fear is good, it keeps us safe.  Are you in danger, right now? Are you being threatened, right now? If fear has been triggered, deep breathe for a while and take a time out for 20 minutes. You may have to say to yourself, “I am okay. I am not in harms way. I am safe.”

If you are doubtful or uncertain, that is okay. It means that you care. Is it something that you need to research? Is it something that you can decide on the fly? Will it impact someone else? If yes, they will need to be consulted before the decision is made.  What solution came up first? Is it still a good solution? Is it a workable and doable solution? If yes, then go ahead and make the decision.

  • Most decisions can be undone or modified.
  • You cannot have it all. Some decisions do not work out as expected, but that does not mean that you did anything wrong.

Extra Stuff

Learn to accept uncertainty

You really can sit with your feelings, be curious about the thoughts that have you feeling a certain way and let them pass on through. If you don’t attach meaning to them, then they are just thoughts and your body will calm down.

Practice making decisions. Yes, decide on where to go out to eat. Be bold and say where you want to go. Pick out your clothes the night before or set a 3-minute timer in the morning to decide (stick to your agreement with yourself). If there is nothing on TV that you really want to watch, then it doesn’t matter what is on. No, you do not have to channel surf, there is a TV guide online and on the freaking TV. Channel surfing is a habit and a time waster. If you find yourself taking too much time to decide on simple things, set a timer for 30 seconds and when the timer goes off, you have to state your decision and stick with it. Moving on, Next!

If it isn’t going to matter in a month, 3 months or a year …how much of your time and energy is it really worth?

Pat

Let it be … Even though every fiber of your being tells you to control it!

December 8, 2021

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:

  1. If people like you or dislike you
  2. Other people’s feelings
  3. Other people’s thoughts or beliefs
  4. Other people’s actions
  5. Who our relatives are?
  6. The weather
  7. The past
  8. 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:

  1. They may guilt trip you
  2. Nice to your face but talk about you to others
  3. They want everything done in a specific way
  4. They complain about family members, nothing pleases them & everything you do is wrong
  5. 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.

Pat

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Wednesday Wonderings …Rules for “Vivi the Ventor” and “Lindsay the Listener”

December 1, 2021

Right off the bat …

To all of our partners, spouses and friends and families:

  1. Yes, we love you, we want the best for you and we want to help, if possible.
  2. No, we do not know when you are just venting.
  3. 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.

  1. You have no intention of changing anything about the situation or the way you react to it
  2. The person you are venting to is dealing with harder or more complicated situations
  3. If you have absolutely nothing positive to say about anything, start working on finding gratitude for 3 things in your life every day.
  4. 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.

Pat

How can I tell people what I need? (Hint, you cannot be subtle nor can you use telepathy.)

November 17, 2021

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

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

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.

Passive-Aggressive

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.

Assertive

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?

  1. Resilience – The ability to withstand or recover quickly from difficult conditions; I can negotiate for what I need and navigate systems.
  2. Patience – The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
  3. Flexibility – Ready and able to change so as to adapt to different circumstances; accept what is happening in the moment.
  4. Compassion – The ability to translate empathic feelings into action (desire to alleviate suffering).
  5. Optimism – Expect a favorable or positive outcome.
  6. Confidence – Sure of one’s self and one’s abilities.
  7. Organization – Methodical and efficient in arrangement or function.
  8. 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.

Pat

Wednesday Wonderings… What are the feelings you are dealing with as an adult child helping a loved one?

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.

There are physiological changes that happen when we are under stress. It affects your body in such a way that you cannot make good decisions. The following was stolen, I mean borrowed from Harvard Health. https://www.health.harvard.edu/staying-healthy/understanding-the-stress-response

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.

Command center

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?

Let’s have a chat.

Pat

pat@EmpoweringHealthOptions.com

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.

Why I do what I do?

August 25, 2021

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.

Pat

Contact Information

www.EmpoweringHealthOptions.com

pat@EmpoweringHealthOptions.com

865-684-8771 (leave a message if I am unable to answer)