My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.
Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.
Although life could be better if Cheryl did not have Parkinson’s disease, I would not have missed one day of our life together. Happy Anniversary to us!
And then not. It is a puzzling disease. It is odd and frustrating. It is Thursday. It is a exercise class day. I had no other expectations beyond that. The morning was kinda normal. I got up at 7AM for meds and she laid back down for a bit. We got up at 8AM. Overnight she had been angry with me for helping her to the bathroom. She seemed like she was dreaming. She forgot where the bathroom is located and became angry when I opened the doors to show her. She shifted into what I call “little kid” mode and said, “you don’t know everything. I’m going to bed.” (Her hesitant PD motion is gone during these episodes.) She has had other verbal dreams like this before. She does not remember them in the morning.
Breakfast was her usual Life cereal with dried cherries and milk. Orange juice is the drink of choice. She perked up a bit and I watched the news. The morning news is getting a bit repetitive; first the covid report, then the Afghanistan debacle and then the general disaster report, fire, earthquakes etc. Life sucks all over the world. The boys in Gaza were not throwing stones and other pieces of concrete at the Israelis across the fence. The Israelis were passing out booster shots instead. But Cheryl seemed to be doing well this morning.
Off into her office she goes to check email and see if there is any news. She checked for text messages on the way there. No emergency emails were found. This could indeed be a good day.
Close to time for her second dose of meds she reported being very tired. Indeed this is a normal wearing off of the medication. I suggested that she should take her ten o’clock and then lay down for a bit. After her 10AM meds she is up and down a lot. It takes some time for the medication to bring relief. She often reports a tightness or congestion in her chest. A coughing jag may occur. She might get up and wander the house with her limping hesitant parkie motion. I asked if she needed help with anything. She said no. I told her that her class was going to happen in a couple hours and she should start preparing for that and put on her clothes, put in her earrings and so on.
She decided I was being mean and I should leave her alone. Perhaps I was pushing too much for her to get dressed.
As a caregiver it saddens me sometimes that as I try to steer her towards activities that I am certain will help her feel better she is resistant. I admit to pushing sometimes to get her off the tired and feeling not up to it fence. She gives me her wrath in return. It would be easier to give in and accept her malaise. The relief is only short lived, as I have done that before and she wanders around in a funk for hours.
We discussed going to her exercise class at length. She told me that she knows it helps her but she was really tired at that moment. I suspect it is hard for her some days to summon up the courage, strength and ambition to go forward with this tiring disease. Her sister Janice often complained of being incredibly tired constantly. In Jan’s case she slept mostly in a lounge chair. Cheryl seems unable to nap in a lounge chair.
I asked if she wanted a little Coca-Cola and chips or a snack of some sort. Yes. What kind of chips do we have? – was her reply. Only potato chips, I think you ate all the Sun chips, I told her. Another thing to keep track of is her appetite and desire for certain foods. Up until about three years ago Cheryl always had some peppermints with her. It was basically the only kind of candy that she would eat. Today she never wants them but I have butterscotch blobs in the car because I like them. She likes them also.
She went to class. I noticed that she seems to be coming out of her funk. She had conversation with several of her fellow classmates on the way in. PCF is such a warm and welcoming place. As she came in and talked to people she perked up. As we were driving over to PCF she asked where should we go for lunch. Then she asked, “How about Skyline for lunch?” We have not been there for several weeks but it is a favorite of hers. (One cheese coney – no onions. Sinful.) We’ll see was what I thought at the time. We ate lunch at the Skyline on Plainfield Rd. (One cheese coney – no onions. Still sinful. I had a 5-way.)
We shopped at the IGA to buy groceries on the way home from Skyline.
We had corn on the cob and hamburgers for dinner.
After dinner she went to work on the labels for birthday cards. She was confused about printing labels when I checked on her but she was working on organizing things.
She came into my office at about 9PM and asked me to give her a ride home. She mumbled something like, “Mom has left so I’ll need a ride home.” I helped take her bedtime meds. I explained that we were already home and I would help her with printing the labels for the birthday cards tomorrow.
Wednesday night dinner out was a favorite place Bacall’s Cafe. She had a half BLT and a salad. I had pot roast, mashed potatoes and vegetables which turned out to be sauteed zucchini. It was a regular night.
Cheryl spent a great deal of the time trying to get her right earring in. She never did. The waitress tried to help but was worried about hurting her ear. Many years ago when she had her ears pierced the incompetent piercer did not get the hole straight through. For many years she was able to make it work. These days her PD fidgety motion makes inserting the post or pin often unsuccessful.
Eventually I convinced her that no one cared and she should put it in her purse and try later. We talked about different things none of which stuck with me. She did not have any odd topics to talk about. It was a dinner conversation that lulled me into forgetting about her PD. We teased each other as old married people do.
I remarked that none of her family came to her family gathering at her cousin’s house. She replied that maybe since they had been at our niece’s wedding the previous weekend they were doing other things. Perhaps she right, as family gatherings go, the clans tend to stick together with not much intermingling.
We saw several old acquaintances at other tables and booths. It was Wednesday afternoon and the old folks were out having dinner and a drink or two. Talking about this and that. She was having a good day for the moment.
When we got home, I settled into my recliner to watch a bit of news and for Nature to come on our local PBS station. She went into her office to look at the clutter and maybe check email. About an hour or so later as I was starting to read my book and tigers of India were saved for now, she showed me some pictures that she thought were of my sister Laura and her family from a trip out west. (POOF) she was off in PD la la land.
The pictures have little to do with Laura although she is in some of them and nothing to do with any trip out west but Joyce and Rob, our family’s only westerners, are in them. The pictures are of two Christmas celebrations twenty-five or so (maybe thirty) years ago.
This whole hallucination, delusional reality thing that seems to have developed during this latest phase of Parkinsonism is truly disheartening.
Last night she addressed me as “Dad” several times. I tend to ignore it when she does this because much of the time she merely cannot find a name or a term for someone or something. Occasionally it becomes a little game that we play until I guess the correct person or thing. She responds with, “Thank you” when I find the name for her.
Sometimes, however, it becomes apparent that she is having a delusional episode. It becomes apparent suddenly to me. I do not recall the exact context last evening but I became aware that she did not know who I am. I asked, “Do you know who I am?” She replied, “Dad always says you are Paul.” My heart just broke when she said that.
It is a hard to describe the emotion. It feels like something in between fear, anxiety, anger, empathy, love and disappointment.
A deep love for her as we travel this journey. One foot in front of the other as we travel step by ever so slower step. We make every attempt to enjoy the scenery and smell the flowers. We take as much joy as we can in the moment. It is hard sometimes but in the last several days new life has come into the wider family and we are happy for the new parents, grandparents, aunts and uncles.
A great fear for her future and perhaps I dread the eventual realization that I might not be able to care for her alone. Those thoughts tumble down into the mire of money and will it last and for how long and how long will we need external support and how long and how long. These thoughts go nowhere. No one can see the future and if you are a deep believer, there is a plan somewhere. It sure would be nice to peek at it to prepare.
An anxiety about all of those things is a first cousin to fear. Meditation and journaling helps. It is not my make up to leave things in the hands of others.
I have developed an empathy through walking this road together with her. It saddens me that I cannot fix it. Much of that thought comes from the feeling that the Plan is being developed as we move along the road. That sucks, big time. The engineer in me pushes back on idea of starting the mechanism while it still being developed. Poor practice as that will really blow the service budget.
A few months ago I realized that the anger I feel, a deep despairingly fist hitting anger, is with the disease and what it takes from her. I am embarrassed to admit that I am not good at redirecting my anger into action. Or deflecting my anger away from her by keeping it out of my voice. I am just not good at that last. I apologize a lot.
All of those things add up to a disappointment with the situation.
On the next day she was lucid, not confused and fine. Go figure. “everyday is a winding road” – Sheryl Crow
Happy birthday to me! On the twenty-first day of August I will note my seventy-second anniversary of my my birth. I have heard this referred to as “trip around the Sun”. I fell down the rabbit hole of how far is that? Naturally Wikipedia provided information and details. This is a trip of 5,062,273 million miles so far and it does not include any travel here on Earth.
Thanks to Mom and Dad for having me. I have gone a long way so far.
And now August is Zane Ryan’s birth month. (7# 3oz. 11:49PM) August 2, 2021 — forever to be known as Zane’s birthday! Babies are a gift.
Yesterday was Hallucination day! I try to schedule very little for Monday. When I was still working it was one of those days that it was unnecessary to plan. Monday usually awoke with a bang and set the tone for the rest of the week. These days it is merely “wash the bed linens” day.
Yesterday which was Monday also was Hallucination Day. Cheryl’s little girls visited for most of the day. They were vividly apparent to her. She talked to them while she was working on organizing her stuff.
I had taken her medication to her in her office on Sunday evening. She was talking to her cousin and spilled the water on a couple of address books that she uses to organize the birthday card activity. A disaster occurred when the books got wet. Yesterday I got the hair drier out and showed her how to use it to dry the pages. She spent a couple hours and an enjoyable conversation with – she said – Virginia. It seemed harmless so I went with the flow. I worry about the eventual outcome.
An aspect of this is that I am able to get her to come back from who she sees by talking to her directly and getting her to tell me who or what she sees. At least she doe not see visions of horror. A drug she took about three years ago caused horrific visions especially at night.
These days she sees her sister Janice and our granddaughter Virginia mostly. Yesterday she saw her Dad, Mom and my mother. She had a long conversation with my mom on the back porch as she swept some twigs and dirt off it that was left by some storms that passed over during the past weeks. When I asked her to come in to eat dinner she asked if my mother was eating with us. Pointing out that Mom was dead dissipated the vision.
The hallucinations are activity related. She talks to Virginia when she is doing arts and crafts. Janice shows up at night when she is sleeping or awake to go to the bathroom. Her mother seems to appear when she is thinking about and working on the card list. It seems like she occasionally mistakes me for her dad when I am working on some household project. Our sons come and go at random in her reality. She often thinks our youngest is here when we are getting ready to eat.
A favorite organizational chart or crafty Venn Diagram
Every now and then the whole confusion and got to get organized thing adds together with the memory thing to make life miserable for a few minutes or hours while I try to locate an important something for Cheryl. Today it was a couple of checks that her friends who are not internet savvy gave to her to donate to her sunflower fund raiser. She put them in a special place while I was not paying attention. Just when things are going smooth and the road looks straight a tire blows out and the vehicle veers off into a ditch.
It is much easier when I can see where she stashed (whatever) in the Special Place. The checks were discovered inside an old envelope from our nephew Stephen that was used to mail a thank you card to his grandmother now deceased. I suppose the envelope was kept because it had a current address for Stephen at the time. Why it was not recorded and then pitched is beyond this humble person’s understanding. Why it is in our house ten years later is less so.
Caregiver Anger — Damn this disease! In her confusion she found this envelope parked where Jill and Michael’s envelope had been parked for weeks. (The Special Place).
It is possible to laugh and cry at the same time.
It would be so much better if she was merely slow and stiff. I say this without meanness. If this was merely a physical disability. It might be easier for me personally to deal with but I am merely speculating. The mental difficulties come and go. They go less so of late. Mentally she is still young and agile. In the present she is older and fragile.
I worry about her falling and then she tells me she can not find something. I help her to find it and she is sorry to have brought an extra task to me so she puts herself in precarious positions to help look for it.
Adjunct_Wizard 