A to Z Challenge 2020: Theme Reveal

I don’t know how to categorize my topic. It’s about health, emotional, mental and physical. It’s often about family. It’s personal. It’s definitely about a particular lifestyle. It’s about caretaking.

Lots of us are caretakers these days. We care for our children with disabilities, our aging parents and family members with dementia. Some of us work in healthcare institutions and give care to patients of all ages and conditions. It’s a special calling, a special task.

This year I’m using the April A to Z Blogging Challenge to share my own experience, my stories, my thoughts and feelings about caretaking. I am a retired RN, retired in the sense that I’m not getting a regular paycheck, but I’m still learning and doing, in the field of caretaking.

I live with my husband, diagnosed with Lewy Body Dementia in 2018. I’m also across the yard from my mother, a courageous 87 year old, and within a short drive of my uncle and aunt, both in their 90’s. Like so many others these days, I have a friend and a dear sister-in-law who are fighting cancer. While not giving daily care to all of these people, I’m often involved with their needs and I do care.

I’m interested in hearing from others about their experiences, since I have already found that caretakers, as a group, have much to share and teach each other. These posts are an invitation to all who read to contribute and connect. The A to Z format doesn’t cover all possible topics of caretaking but serves as a starting place for discussion. Please join me this month as we explore being caretakers.

There is a moral task of caregiving, and that involves just being there with that person and being committed. When there is nothing that can be done, we have to be able to say, “Look, I’m with you in this experience. Right through to the end of it.” Dr. Arthur Kleinman

The New Normal (Our Life with LBD)

I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together.  His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

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We got the boots.

Assisted Living 101: answering questions

Assisted Living: Who Decides?

I have come to the conclusion that the answer to this question is different, case to case. I can think of examples for every possible scenario. I can only give what has happened for our family.

My parents moved numerous times in their lives. They were tied to a general area but not to a particular house. Each time they moved they practiced parting with things. They practiced flexibility. Some people are not that way. I have always been a bit surprised by their flexibility because I have seen the opposite happen with my grandparents. They were not as comfortable with change and they stayed in the home they were familiar with until it was impossible to do so.

Mom has jokingly said that she looked forward to nursing home social life, playing bingo and cards, etc… so I know that she has thought about the subject way before she had to. Watching others go through decisions about caretaking made her lean in the direction of not wanting to be a burden on her children. We have all had to reassure her that we are all “burdens” to each other if we want to view it that way, and that every burden, planned for and accepted cheerfully, has corresponding joys and rewards. For mom, this means she can know she is loved and can depend on us. For us, this means that we trust mom to make a decision for herself, and that we will do everything we can to make it happen.

Mom was not afraid to put her name on the waiting list, but I think we were all surprised when it was announced that she was next in line for an apartment. This announcement came at a time when Mom was struggling with her feelings of loneliness and isolation, the shortened days and long dark nights, the winter cold. There were people she could reach out to, frequent phone calls and my brother and his family checking in on her, but even with all this there were sometimes days at a time when she was not face to face with anyone. She became very clear about one thing – she no longer wanted to live alone. Maybe it was not a coincidence that there would soon be a place for her in a warm, secure building with people to see and be with any time she wanted. When you are a praying person, you examine “coincidences” in a whole different light. And that’s what Mom has done. She says she owes it to herself to find out if this is right for her, and why not do it while she is young enough to enjoy the many perks?

Meanwhile, my brothers and I are battling winter with Mom in any way we can. I am so happy that I am free to visit her in Wisconsin for an extended time. Since I have been here, the apartment has come open and I will get to help with the move. We are having fun getting ready. Wait ’till you see what Mom is doing! Clue – a lot of red paint is involved.

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Mom and her five “kids” spending time at her home in Hayward, Wisconsin

 

 

 

Vigil

If a person is a nurse, which I am by profession, it is almost impossible to avoid having to make decisions for people. At the very least one has to know when to influence people to make a decision for themselves that is best for them. Sometimes the decisions are about life or death and the responsibility can be scary and somewhat overwhelming. It just comes with the job. When I walk out the door on my way to work I am most always in a prayerful mode, asking God for the patience to make it through the day and the smarts to know what I am seeing when I look at my clients.  It’s been one of those scary weeks and I am thankful that my prayers are heard and answered.

My newest elderly client (and friend) has been out of rehab and at  home for almost three weeks.  He came home far too soon and needed a lot more help than any of us knew he would need, but we had hopes that his strength would increase and he would thrive. He was so overjoyed to be in his own house and out of the hospital.  I was leaving to visit my parents a few days after he came home, but we managed to get a crew together to be with him almost 24 hours a day.  There were ups and downs as everyone settled into routines. I returned from my time away and began helping with Jack’s care again.

And then this week, there came the morning that he was so short of breath that sitting up on the side of the bed required a rest period.  Trying to get into the car for a doctor appointment was so difficult that we decided to cancel it.  And his own admission that he didn’t feel well and just wanted to lie down finally tipped the balance for me.  Something was wrong and not getting better.  This was the first time I have ever called 911.  It was a good decision.  We were in the ER for the next six hours and he was finally admitted to the hospital with congestive heart failure.

There are four of us caretakers for Jack and we are still keeping vigil.  He was moved to the cardiac ICU yesterday. Jack remains uncomplaining, always worrying about whether we have eaten, always trying to send us home to rest and wondering if we’re taken care of.  We have hopes that he will improve and come home again, but there is an awareness of how fragile life is, how quickly things can change and how precious the time is that we have with each other. I’m just saying that vigils can be a bit stressful…

The Way Things Are

I have no control, not really.  I may make appointments and think I know where I’m going to be, but it’s never really the case.  It’s such a true saying “wherever I go, there I am” and that’s about all I can count on.  It’s okay.  It relieves me of a lot of responsibility. I didn’t even get upset last night when the post I’d spent a couple hours thinking through and writing down disappeared when I inadvertently moved my hand in front of the touch screen.  I guess WordPress doesn’t have automatic update/save.  That’s the way things are.

Today I am put in charge of a situation to solve for someone else, if I can.  I have total compassion for people who by some strength of body and mind have managed to live to be old, like over 90, and still are taking care of themselves.  But things get difficult and maybe it’s hard to remember how you used to take care of difficulties with contracts and bills and harassing phone calls.  So you are happy to let someone help you.  I was volunteered for this job.

My friend C. who is younger, only a year or so past 80, has taken to looking after a neighbor, the above mentioned person.  A while back she fell in the driveway on her way to the mailbox and couldn’t get up. Someone noticed and came to her aid.  Later when C. was with her he suggested she get some kind of device she could use to summon help.  She had one – it was in the house, when she was in the driveway.  He found out she was a bit disturbed with a bill she had gotten from the security company.  She had an experience with a rather sharp tongued customer service rep when she called to ask about it.  She didn’t understand and C. couldn’t explain it to her but he told her Shirley would take care of it, not to worry.  Right.

After half a dozen calls I finally get to someone who might have info on this account and, as usual, I have to have a password or they won’t address the issue with me.  That’s the way things are.  What are the chances our 90 year old friend will remember a password she chose three months ago?  I don’t remember passwords I chose last week.

It’s a strange day outside.  It is bright and sunny except for the three or four times (about every hour) when a cloud has coasted overhead and dumped torrential rain for 10 minutes or so.  We are in Florida and that also is just the way things are.