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.
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.
When we were young Cheryl was a very good seamstress. She impressed me by making me and the boys a couple of shirts. I have no idea of the amount of work, effort and skill it takes to make other items of clothing but the year she made us custom fitting flannel shirts for Christmas I was super impressed. I still have a couple. The rest overtime I managed to wear out and fray most of them beyond repair. I can tell you that there is nothing, nothing better than a well tailored shirt. If you have ever had a shirt made for you, shirts off a rack are never the same again. Although I never owned one I can understand why men could spend thousands of dollars on a hand made suit. No wedgies in your armpits or elsewhere.
Today for whatever reason she has decided the pillows need to be trimmed differently. Here we are in Joann Fabrics. It is hard for me to understand what she is thinking. She has a hard time expressing her thoughts. It is overwhelming like a lot things these days. I really do not know how to help her.
The plan that I conjured was to get outside before the inclement weather turned up. Maybe a walk even though it is cold the wind is still. And afterwards we can have some lunch somewhere. It is Sunday and we have no plans.
But she found her stash of earrings when she was putting her clothes on. I was in full on waiting mode in my little office hide away hoping to not get frustrated and jump in to speed her up. This is January in Ohio and it has been weirdly warm for a couple weeks and that usually means the crap is coming. I became anxious and went back to check. She was messing around with her earring stash. I reminded her we were going to take a walk and have a little lunch somewhere. Oh yeah, that’s right said she. She came out of the bedroom with a bunch of her earrings in a box to take to the jeweler for repair that they did not need. I pointed out that it was Sunday and her favorite jeweler is closed today. She said maybe we could go sometime this week and I readily agreed.
Let’s go take a walk and get lunch. Okay she said.
That all went out the window as we got into the car and she told me about Joann Fabrics and pillows and fringe and trim and once seam binding. Happily I knew what all of those were but had no idea why she was telling me or what she had in mind. I had a lot of questions. I reluctantly drove toward Joann Fabrics instead of our favorite park to walk in. Switching from earrings to pillows left me dumfungled.
I drove to Joann Fabrics and later after we had absorbed enough of the ambiance, we went to a close by Cracker Barrel for salads and pillow talk. This was a soft talking day and Cracker Barrel was a bad pick for quiet conversation but they did have a nice wood fire going near where we were seated.
Later when we got home she showed me the green pillow that she had been talking about. I think she made this waiting for one of our kids to get big enough to be born. I do not remember which one but this pillow has been in our household for several decades.
It is such an odd disease. Cheryl slept very soundly last night and because of that so did I. I do not remember awakening to visit the bathroom at all. I must have but I have no memory of it.
Today she seemed really good. She was struggling with a BM and I worried that she may be focused on that tonight. It is only 11:28 so there is still time but the “I need to go home” was strong. I tried another suggestion about asking where to turn and how to get here. She was not sure of the way. We got back from our little circuit. She was okay with being here. She told me to be careful when I went home. She pointed the way to Galbraith Rd.
She walked around the house while I garaged the car. She was still unsure of “home”. But it looked a bit like home to her. It seemed like I was winning. If I could have charted it, the pattern was more like the markets of the past few weeks – up, down, up, up, down – yadda yadda yadda. Hard to judge. Up? or off?
It was a constant running commentary to help her with PJ’s. I lied that I had reported where she was staying to her mother. I lied that her mom was okay with staying here. I lied that I sent and email message to everyone telling them where we were staying. I said, “I love you.” she replied, “I love you too, Jan.” She noticed her mistake. I ignored it. It is unimportant and she is very tired.
Eventually she succumbed to tiredness and laid down in bed.
The night is still young and the morning is not here yet.
Carpe Diem the connection to the addled mind inside.
Asshat is one of my favorite terms for “stinker”. When I read it in a book it makes me giggle internally.
Today I was an asshat. Cheryl had a rough night. She spent a long time feeling something in her bowel that would not happen. Sadly one of the often not talked about symptoms of Parkinson is constipation. This condition is treated with various devices, more veggies, extra fiber, fiber enhanced foods, docusate sodium (stool softener), Miralax, psyllium husk powder, and others. The result of many of these maybe all is an emergency. And sometimes a declogging device. We have been down this road many times.
Why I did not recognize it last night at 3 AM is beyond me. Maybe not.
I was an asshat. Today I am trying to recover from my overnight asshattedness.
Sheri called yesterday afternoon and talked to Cheryl some time. Cheryl was working on “organizing her office”. It was a slow day for her. It was the anniversary of her father’s birth. He has been gone for some time now but if he was alive he would have been 100.
Sheri had called a couple days ago in response to getting a Christmas card from us. I found the message she left on our phone when I listened to the message from my brother-in-law. He had called to wish us a Merry Christmas and I did not pick up right away because we were eating. I discovered Sheri’s message from a couple days prior. Sheri is a dear friend. Her sister has Parkinson in one its many flavors also.
Sheri,
Thank you so much for calling Cheryl yesterday. She was having a slow day.
Yesterday was her Dad's birthday. If he was still alive he would have turned 100. Her brothers and us gathered at her Dad's favorite bar in St. Bernard last night. She had a good time I think but did not always know what was going on. 😔
When you hung up the phone she asked me who she was talking to. She sometimes forgets who called and is too embarrassed to ask. I often stay near her when she is talking to someone and ask something using the person's name. I was busy with other chores. Memory loss, aphasia and confusion is a constant struggle for her.
You called while she was sorting through a bunch of old Christmas cards and some new cards on her desk. She reads and rereads them and has long conversations with each person that she tells me about later. Greeting cards are important to her. She cherishes all of them and rarely throws them away. 😁
Thanks for calling. I could hear that for awhile she was talking to a friend on the phone and working on her stuff. You lifted her spirit. Earlier in the day she told me she was sad that all our parents are gone now which is a pretty lucid thought for her. She talks about and to her Mom and deceased sister Janice a lot.
You have no idea how much you helped yesterday.
Thanks again,
I thanked Sheri for talking to Cheryl. Cheryl becomes very animated when someone calls her on the phone. When we come back from anywhere her first thought is to go into her office and check for messages on the landline. real people rarely call our landline. It is not actually a landline as voice over IP became popular perhaps 20 or more years ago. Cincinnati Bell changed its name to Fioptics (again) to highlight its business. Many years ago it was Broadwing. (I don’t know either.) I have digressed.
This article talks about the importance of staying in touch with older adults. It target was old people during the height of the pandemic pandemonium but it is a thing to think about with any older adult with an isolating disease like Parkinson’s or Alzheimer’s. Older adults do not always realize that they are isolated. Children and family could call and check up if they wanted to do that.
Now if I could get her brothers or sisters to call arbitrarily out of the blue once in a while, much would be better.
Adjunct_Wizard 