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 going through a bit of confusion as I put dinner on the table. She kept getting up to look for her deceased sister Janice. (She called her Janice instead of “Jan.”) Eventually she was satisfied that Jan was not here to eat with us. She became interested in food and ate what I had cooked. (Chicken, noodles, green beans and broccoli)
I had put some music on the radio to play quietly while we were eating. Jimmy Buffet and “Margaritaville” came on when we were finished with the meal. I asked her if she wanted to dance. She said yes. We did.
For a few minutes we were young at a dance with Jimmy Buffet. Our dancing these days is more of a swaying-in-place but it is fun anyway.
In a previous post I wrote about finding a little card entitled “The Art of Marriage” in Cheryl’s purse. As I unwrapped and unfolded the little package in her purse I was very aware of the fact that it was none of my business what she kept in her purse nor why she kept those things in there. Nevertheless, faced with various requests for help, like, I can’t find my black comb or I have lost my glasses, I try my best to keep up with how objects and things are pared up, associated together in her newly confused mind.
I am guilty of looking around through her stuff to help her keep track of her stuff. I have no other interest in her stuff. That is my defense when I am caught. So far so good. I have not been caught yet. She thinks I am really good at finding things. If you know who would think to look in the freezer for a comb or used Kleenex for example, then you know someone who is care giver to some person with some variety of dementia.
Punding is a term used by the Norwegians or Swedes to describe the activity of mindlessly sorting or aligning objects, often random objects, in a fashion known only to the person doing this. I believe the term means “blockhead” Swedish.
In Cheryl’s case this behavior manifests as organization of articles and documents in preparation for a meeting or some other activity. She ran the early computer tech program at Nativity School when our children went there. Having no educational background caused her to be constantly looking to others who did, attending meetings and reading articles. She was excellent I am sure simply because she was aware of her weaknesses. She also helped her mother send cards and notes to family and friends to thank or take note of various occasions such as birthdays, holidays, anniversaries, graduations or merely an invitation to dinner. To this last Cheryl has kept many thank you notes from her mom for Sunday dinners over the years.
She gets these out and sorts, re-reads, thinks about her mom and shows them to me as though she received it in the mail today. Often she will say, I got this card from Mom. Or I got this Christmas card from (whomever).
She collects these in various clumps and collections. Some are in manila envelops. Some are in small gift bags. Some are collected in stacks with a rubber band around them. Some are in stacks held together by spring clips. Sometimes they may make some sense to me, sometimes they make no sense. No chronology. The collections can be totally random.
As she looks at the cards she reminisces about the old times. I used to point out that she was looking at a five year old Christmas card. I find that unimportant to do now. The activity is totally harmless. Late in the evening she is amenable to “I can help you with that tomorrow. Let’s go to bed and rest so we are more alert to work on that.” And we trundle off to bed tired from another day.
Today it occurred to me as I cleaned the Kleenex lint from the washer and dryer for the nth time, it was doing no good for me to lodge a complaint with Cheryl about putting tissues in her pocket. It also occurred to me that although I beat myself up about missing the tissues in her pocket, I will probably often miss one once in awhile.
Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. (from the CDC)
Drat and alas. Drat, she cannot remember to do it. She cannot remember my complaint either but will detect the disappointment in my voice and probably interpret it as anger. And alas, I will occasionally forget to look in all the pockets.
I will forgo the complaint process. It is not useful anyway. I merely causes us to pick at each other. (Forgo was the answer to the Wordle a couple days ago.)
We had a wonderful dinner with friends last evening. This gathering had been put off three times for various reasons but yesterday we got together. Gary showed off his wine aerator when he was pouring the wine. He told me he cannot tell the difference. His palate is older than mine and I had gin and tonic. Perhaps he was sold a bill of goods by an aerator salesman.
Everyone contributes when we have these dinners. My job was bread. Yesterday after several false starts I got two loaves of italian (my version of italian) together. They were remarkably good so I should perhaps I will note in my notebook of cooking disasters what went wrong and what I did to recover.
Leftover from the french toast leftover loaf.
Today Cheryl is very tired. She refuses to admit it. I suppose I am tired also. We did not stay out late but we did sit up and watched a PBS show to unwind a bit when we got home.
We had french toast made from the second (leftover) loaf of bread from last night. It was good again. I am very thankful that I do not have celiac disease. One reason to not be grumpy today.
Cheryl spent some time cleaning the kitchen after she had her french toast with blueberries breakfast. All the time I was worried about her. I think I am anxious for her because the last few times she has fallen, it has happened in the kitchen. This time however she moved a lot of things around and wiped counters; swiffered the floor; threw the kitchen tablecloth into the washer along with the clean one she got out to replace it with (both will be clean in soon); and then became tired and uninterested. She took her ten o’clock meds and went to lay down for a bit. When she awakened, she announced, “Today is my birthday!”.
On top of the paper is my handy white note board telling today’s events.
It is not and stupid me pointed out that it is May the fourth. I thought about – may the fourth be with you – but left that unsaid. She responded with, I wish people would stop changing the dates or some other angry anxious comment. I backed off quickly. I apologized to her and pointed out that her birthday was next week on the tenth of May but tonight we should go somewhere and celebrate her birthday.
She became calm and sat down to watch the gabfest on the View. I brought her a coke and set about putting the kitchen back together. I discovered that she had thrown the tablecloth from the table in with the folded one from the drawer into the washer and I did not catch that before tossing a bunch more towels in on top. (Damnation. I became immediately grumpy.)
I sat down to write this little story and laugh at myself. I do not want to be grumpy today.
She actually slept pretty well and later today we will probably get out and take a walk in the park. And celebrate her birthday. There is nothing to be grumpy about. We had dinner with friends last evening. It was good company and good conversation.
There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.
Max throwing his fast ball
I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.
FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.
I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?
Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.
With that thought she got up at 1:30-ish in the early morning. It has come to me that when her dreams become real, I have to just go with the flow. I tell myself that our experience has shown that this episode will last about two hours, so be patient and helpful during that time. Some might to this as a prayer but I think of it as description of what I need to do to help her get through this nuanced dream she is experiencing right now. (And Carpe The Damn Early Morning Diem. 🙂 ) I suggested that she should have something to eat and she would be more alert, her mind would work better while she was writing the article. She agreed with that and asked what we had.
I suggested cereal with a banana cut up on top and some o.j. She took her vitamins. Later after she decided a piece of coffee cake from yesterday morning would be good also, we discussed how she could get started. She looked at the two-day old paper on the kitchen table for I bit. Maybe she was thinking about what to write? She did not tell me.
I suggested we watch TV for a bit while her thoughts gelled. We watched a couple TV shows that were previously recorded. After a few minutes as was our previous experience she became tired again and we returned to bed at 3 am.
The alarm went off at 7 am and I fetched her morning meds and we returned to bed for a little longer as we usually do. Twenty to thirty minutes is usually enough for her to get moving. I fell asleep a little more soundly than ordinary.
I woke up and realized I could not hear her. I got up and put some clothes on. I searched the condo and could not find her anywhere inside. The front door was unlocked. This morning when she got up, she left the house.
Did the rapture happen? It scared me. It is my greatest fear, not the rapture, the fact that she had wandered off looking for something she could only see in her mind. Fortunately she was just outside the front door to our building and it was not raining.
Later as she was laying down to rest she told me, she was looking for anyone awake. She was scared that no one was here. She had decided to go look in the next building for anyone. She asked me if that woman who runs things here was around – whoever that may be. I left, “What are you thinking about?”, unsaid and suggested we go out and get some sun. Take a walk. Maybe we could have lunch.
One can always learn new things if you open your heart to the experience.
Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.
Stephan T. Patsis is a favorite cartoonist. His signature work, “Pearls Before Swine” is the cartoon in the comic section of the local newspaper that I read first when my wife hands me the funnies and says, “There are some funny funnies today.”
You have to choose to be happy. The goat who is somewhat intellectual and thought provoking tells rat. An absolutely true statement from a smart goat. One does choose to be happy and no one else can make that choice for you.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. – Desiderata by Max Hermann
Adjunct_Wizard 