My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
Cheryl was moving slowly this morning but she said yes when I asked if she wanted to go to exercise class. I asked her if she wanted her blue shoes. She said, no, I want the pink shoes.
An old do-wop song jumped into my head.
It is amazing the crap flying around in your brain. I wonder how that works.
In Cheryl’s case it does not work as well as it once did. Her memories are jumbled up. She remembers that our granddaughter Laurencia is about to be graduated from The Ohio State University but mixes that memory with her mother’s teaching career. I used to correct the story but I no longer do.
Our granddaughter Regan is finishing high school and will move on to attend Ohio University at the end of this month. That idea is jumbled up with our grandson Max who graduated last year and is going to Miami University. When Cheryl tells the story we have three graduates. One of whom has been teaching for a couple years.
She wore her pink shoes with gray shoelaces, a flowered shirt and man oh man…
One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.
Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.
Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.
Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.
Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.
I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.
As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.
When I started these thoughts on Sunday, I wrote that Sunday for me is a time for reflection. It is not the only time.
Thinking about the future of things while making the bed up and doing other needed chores for today — Qué será, será – Whatever will be, will be – an old Doris Day tune popped into my head. It made me smile. Was Elaine floating around today? Doris was a contemporary of Elaine’s in high school. Cheryl seems to sense her mother today. She has mentioned her a couple times in the present tense. This evening she asked if we could go visit her mom tomorrow. We will. She seems to know her mom is deceased. I did not remind her of that fact. Perhaps we will go visit her grave tomorrow and then find some lunch.
I wonder if I have planned well enough for our future. Whatever that may be. (Man plans, God laughs.)
Perhaps another meeting with the children is in order. I should make an agenda so that I do not forget anything.
It was my fault. I thought it would be a good thing to take her shopping. The target was J C Penney. The goal was towels. In retrospect I could have selected a different path through the store. The Men’s clothing aisle also leads to the home part of the store. (An AHA moment.)
She found a purse and looked at wallets but none were satisfactory. Or maybe I was an ache in the posterior. She told me she never gets to go shopping very much anymore. She is right. I probably also help guide her maybe more than I should.
From a male perspective this was worse than looking at a menu in an unfamiliar restaurant. It was overwhelming choices of color and style.
We did find towels and a bathmat. In the home area she told me that she likes bold colors. She selected a sort of hunter green, harvest gold and creamy white. She ignored the fuscia, orange, purple and tomato red. Our bathrooms are light green.
In our current life of ups and downs this day is a truly strange one, at least, not one that I would have expected based on how Cheryl slept last night. She seemed to be awake most of the time. She was a little fidgety when she went to bed at 11 pm.
I sat up for a bit to read and when I came to bed a few minutes later she was, of course, awake although she did not talk to me. She fidgeted and eventually I fell asleep. I cannot explain how I know she was awake most of the night but she was awake every time I chased my bladder to the bathroom overnight.
Usually if she sleeps poorly she is physically unable to move easily the next day. But that is not true today. She is moving much like her 60 year old self which is better that her yesterday self. What happened?
It is a strange day. She got herself up with no help from me. This is very unusual of late.
Maybe it is my imagination. I did not sleep well and I think I am grumpy for it. The sun is shining brightly in Ohio. Humbug.
The image is an old Calvin and Hobbs comic if you viewed this on a computer. Why is life not fair in our favor? There is no answer to that question.
Naturally the other Cheryl has posted about sleep on her blog.
And Carpe Diem.
Update: She has been hallucinating people on and off today as well as telling me about strange happenings in our condo parking lot (construction) and how busy the restroom at Perkin’s was with some guy changing his baby. (I hope she sleeps better tonight.)
It used to bug me a little bit if Cheryl leaked out over night. But one day I said to myself what is the big deal. It’s just laundry.
It is now another mantra for me. Much like Carpe Diem (seize the day or seize the moment) after repeatedly saying mottoes like this out loud or not, it changes your mind about whatever is bugging you. Out loud is better.
Psychiatrists and psychologists call this cognitive talk therapy. It works for many situations. The important part is to keep doing it even if you do not think it is working for you. Eventually you will convince yourself.
After I wrote the initial thoughts I had on this topic of changing your attitude to be positive, I tripped over this article by Rachel Feintzeig in the Monday Jan 23 edition of the WSJ. It intrigued me. Naturally there is an app for that. I used to think that it was better to be a pessimist and be surprised by events than to be an optimist and be disappointed by events. This is summed up by the dismissive and sometimes arrogant, we’ll see comment that is spoken by pessimistic personalities.
An added bonus to reading Ms. Feintzeig’s article is that I learned a new albeit made up word: pronoid. A friend of her’s made it up and explained it to be the opposite of paranoid. He believed the world to be conspiring in his favor.
Pronoid – a situation where your surrounding friends and environment join forces to make your existence better than at first perceived. (I like it.)
Overnight urinary incontinence can be really inconsistent and inconvenient but in the end a load of laundry solves it. Cheryl lately is losing interest in her exercise classes that she used to like, I try to bump her into some other physical activity. Take a walk, go shopping which is also a walk, or something. Outside is best but sometimes the weather does not cooperate. Carpe the moment. I try to read her mood and find something that is not in our condo.
It does not always work but activity is best. Sedentary is less than best.
With all of the memory, confusion, delusion and dementia issues that have come up in our life with parkinson, evenings put me on high alert for hints about where she is mentally.
Last evening was particularly troublesome and at the same time interesting about where her mind was. For the previous couple days she occasionally would tell me how much she liked this”place” better than the other one. When I probed a little bit I discovered that she seemed to think that we were trying this condo out before we bought it. last night she asked if we were going home tonight or if we would wait until tomorrow. (Carpe Diem!) I told her that I did not want to drive all the way home tonight. I thought it would be better for me if we slept her and left in the morning. She agreed that it would be better to get a good night’s rest before driving back home.
A different discussion started about what to take with us and when to pack. I suggested that we wait until the morning because any dirty laundry I could easily pack in a garbage bag. I would not have to be neat about packing. She said, or you could wash it in the morning before we leave. I readily agreed. There were two or three story lines going at the same time. There were condos in two different places, here and at home. But we were going there tomorrow.
It became important to inform her sister Nancy that we were coming home tomorrow. I sent a text message to her sister informing her that she might get an odd phone call in a little bit and to just go with it.
Cheryl decided to water the plants so that they would be okay while we were gone for a week. (Nice, we were coming back.) I kept my mouth shut and helped to fill the little measuring cup we use to water the house plants. The story was still unfolding as the evening went on.
It looked as though Nancy was off the hook for the phone call and I informed her about it. Cheryl shifted gears and called her other sister Debbie. (Smiley face) I did not see that coming.
I helped her dial the phone to talk to Debbie and scrabbled to text Debbie about what was happening. I was not fast enough and opted to talk over the top of Cheryl to quickly explain the purpose of the call. Deb caught on quickly and smoothly adjusted the topic to their cousin who was in the hospital and probably soon moving to a close by hospice facility. They talked about that for awhile.
When she hung up I informed her that I had texted Nancy and told her that if Nancy needed more information about where we were or our other travel arrangements she could ask Deb. Cheryl replied that she had just talked to Deb and that would work. (Another smiley face) She did not remember that I was in the room while she was talking to Debbie.
I better call Anna and tell her too. When our daughter Anna answered I said over Cheryl, “Just go with it.” Anna did.
It was a busy hour and a half with phone calls and plant watering but all was well an hour or so later when we went to bed. She got up once to visit the bathroom and eventually got up for blueberry pan cakes and orange juice at about 9 AM.
These two aspects of the Parkinson Dilemma are frustrating from a care partner viewpoint. They are the source of laments and weariness. The grind can be debilitating in many subtle and unsubtle ways.
Physical disability is only recognized by Cheryl when she is so physically tired that she cannot stand up. And even then she fights the thought that she physically cannot do something. That something might be as little as getting up out of the chair that I put her in because I was worried about her falling. There must be a balance somewhere. So I help anyway without trying to be a helicopter helper and hovering about her space.
Her mental ignorance of her ability to do something – rare is the occasion that she will ask for help – is simultaneously frustrating and heartwarming. She wants to do it. If she starts it and I complete it she feels like she did it. (Ugh!) Her memory does not allow her to remember that I completed whatever it was. So I help anyway without trying to be a helicopter helper and hovering about her space secure in the fact that she will not remember and assured that it is unimportant for me to correct her when she tells someone – see what I did. (except when she tells the doctor.) Tee Hee!
Seize the day and make something new if things are not going your way. Parkinson is a progressive dilemma and in Cheryl’s case there is an element of creeping apathy. The meah factor appears as she loses interest in doing things – exercise, writing birthday cards, visits with friends, laundry, making cookies, taking down the Christmas tree and decorations and other things. A little push every now and then never hurts. She will not remember that it was not her idea if you are subtle with your pushes.
Today we will visit a cousin of hers who is in the hospital. She is uninterested in exercise class. The hospital will be a long walk so we will switch activities today. And then as we left the little lunch place and headed toward the hospital my son called with a request to pick up our grandson after school. More driving but out in the world today. We will go to the hospital tomorrow.
This is an old picture but it is how I see this woman, the love of my life, the place I am home. I see that smile less and less but sometimes early in the morning it peeks out of her face.
Adjunct_Wizard 