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 never likes it when I suggest she should take a shower. She accepts that information as me telling her that she stinks. She does not but I keep track of how often she washes herself in the shower. She can no longer remember that information. So, when I ask if she needs any help taking a shower and getting cleaned up and she snaps at me, I ignore it as I am able to do.
It hurts occasionally and I react to that sometimes but I feel in my heart she does not recognize the hurtful comments she makes sometimes.
Another “goal” is to keep her safe and not walk away no matter the vindictive.
Many maybe all of these surprises are attached in some form to the various meds used to stave off the effects of the disease. Many of these surpises are not Parkinson at all.
Cheryl falls over upon occasion and those occasions seem to be increasing in frequency. She always falls backwards. Always is a strong adverb simply by being superlative. Every time I have witnessed her fall it has been backwards. When she gets up from a chair and I encourage her to lean forward to put her upper body weight over her toes (nose over toes) she will only do that for the first short motion of standing her next thought is to lean backwards while pushing on the chair. She is afraid to commit to the motion of standing. There is nothing I can do to help. I will ask her if I can help. her usual answer is “No I think I can do it.”
No-I-think-I-can-do-it often causes conflict. Two things tug against each other my unwillingness to allow her to suffer in silence is pitted against her unwillingness to recognize she needs help in some situations or her unwillingness to give in to the handicapping disease. That is one third of her physical surprises – balance issues.
The other two thirds are urinary and digestive issues. Urinary issues are mainly overnight incontinance and a constant fear of daytime incontinance. This last is exacerbated by the inability to easily stand from a chair and her unwillingness to ask for help when her bladder reports to her brain that it needs to be emptied immediately.
Digestive issues are both physical – constipation and indigestion and mental – as in making menu choices or answering “What would like for dinner, dear?”
Parkinson is a complicated disease and that is complicated by the many this-will-cure-you charlatans out there providing help to the parkies who need it and would desparately like to be cured. Many charlatans are not on-purpose charlatans (I am willing to give them the benefit of the doubt), they merely have strong beliefs in something that has worked for them. Parkinson is not hopeless by any sense but it is degenerative. It is complicated. It requires more than a PhD from the university of Google to solve.
Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.
Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.
The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.
After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.
I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.
When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)
The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.
We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.
Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.
As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.
Research study questions are I opening (I know you think eye opening) but I meant I as in me. Before the pandemic pandemonium Cheryl agreed to participate in a longitudinal study on Parkinson’s disease.
There is an initial evaluation of mobility and mental agility. There is a blood test, urine test and stool sample test.
Much of the mental agility data collection effort is question and answer style. Several different instruments are used, one of which is the Beck Depression Inventory. As Cynthia (study tester) asked Cheryl the questions and marked her answers, Cheryl began to cry. Cynthia decided to skip the test. She did the same thing with the MOCA test. Cheryl could not draw a clock last time she took it.
As Cheryl was using the restroom I remarked to Cynthia that this might be the last time that Cheryl would be able to come and participate in Dr. Espay’s study. It was not that I thought she did not want to, rather, her mind is gone to the point that she may be of no help to them. Perhaps I should not impose on Cheryl’s desire to help others. A year from now she probably will not remember this visit.
The Beck instrument starts with questions such as:
1. 0 I do not feel sad. 1 I feel sad 2 I am sad all the time and I can’t snap out of it. 3 I am so sad and unhappy that I can’t stand it. 2. 0 I am not particularly discouraged about the future. 1 I feel discouraged about the future. 2 I feel I have nothing to look forward to. 3 I feel the future is hopeless and that things cannot improve.
… etc.
Cheryl teared up on question 2. In each question the participant selects the answer that they feel at the time. At the end a score is computed that evaluates the participant’s depression. Cheryl’s emotional level was strong on the second question and Cynthia stopped the instrument.
I had not realized how this disease was weighing on her emotions. As the disease progresses Cheryl needs more help physically. She relies more on me and others around her. She is very resistant to accept help from others constantly. She gave up driving long ago. A big part of her independence left her when she gave up driving.
It has proven to be a very emotional disease. Cheryl becomes angry with me when I help her “too much”. We have been together too long for me to ignore her needs. I help her anyway. She gets angry with me. I get angry with the disease and what it has stolen from us.
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…
Cheryl and I gathered last night at a place on a little river nearby with most of her brothers and sisters to celebrate nothing in particular. They just wanted to be together for a bit and share dinner.
The conversation swirled around Cheryl and a small child in the next room was testing her lungs on the building acoustical characteristics by screaming. She was probably about three years old and comfortable in her own skin. No one was scolding her.
Tari had her bluetooth cicada stuck in her ear in case there was an emergency and drank a very white pina colada. (I always saw them as yellow sometimes pink if they had a maraschino cherry garnish.) I put my cheap cellphone on the table in anticipation of Cheryl’s 7PM medication but forgot to check if the alarm was set. Nancy has gotten Gene to drink amaretto sours which is the only thing she will drink other than water. Gene usually drinks only water. Cheryl had a Pepsi because they did not have Coca Cola. Ken ordered a Captain and Sprite which I suppose is another Pepsi product. Jill drank water no ice. I had a dark colored Budweiser tasting beer (beir) on tap brewed locally by some mystery brewer specially for this restaurant. It was okay bier.
The food was excellent. The Deutsche themed restaurant offered schnitzel which I have not had for some time. Kartopfelpfannkuchen came with it. I ordered that. It was perfect. Cheryl ordered chicken tenders with the signature bourbon barbecue sauce, broccoli and apple sauce. She ate most of it which meant she both liked it and she was hungry. Barbecue chicken of some sort was the majority dish for the rest of the table. Others had a rib-eye steak and chicken cordon bleu. Those decisions made the conversation continued loudly. Cheryl had her parkie voice on which is very quiet.
The room was decorated with models of tanks and other weapons of war. Above the two marines in the front window there hung a bazooka the nemesis of tank warfare. It did not appear loaded. The current Abrams (M1) tank did not have a model present as did not the Bradley fighting vehicle. I think there was a Patton on display.
This is the sort of gathering that Cheryl’s mother Elaine would have enjoyed and as we were driving away it became apparent that Elaine had been there. She began to worry that her mom would not get home. That was our job most of the time when her mom was still alive. I assured her that her mom was where she lived now and would not need a ride. Cheryl reminded herself that her mom had passed onto another plane.
When we got home we watched TV for a bit and as it got closer to bedtime and she was more tired, she was also more confused. We talked some more about Elaine and as she remembered that her mom was in heaven, she asked, “Was there a funeral?” I replied, yes. Do you not remember? No, I do not she told me. So I started down the road of jogging her memory. Nancy got up and read a wonderful eulogy about your mom. Do you remember? Oh yes I remember that now. She talked about Bob and Mom. (Nancy did not but did a very respectable job of eulogizing her mom.) It is hard to keep calm and composed when your parkie wife wanders off into the memorial weeds. I merely acknowledged that and reminded her that we had a little luncheon in St. Clement’s lunch area. She remembered that pretty well.
She calmed down and called our son Scott with the news that we were home downstairs of grandma. After she finished her call with Scott she asked, “Is grandma not upstairs?” Her thoughts will bounce around for awhile after a big group gathering. She eventually remembered that her grandmother had passed away but became anxious for a bit that she could not remember any of it. Her grandmother’s funeral was early in our married years. I could not help her remember but we did settle on her calling her cousin Barb to find out what happened to grandma Moeller. (Today as I write this I notice that any and all of that anxiety is gone.)
Trying to keep up with conversation with her siblings is exhausting for her. They are catching up and joking around. This activity takes her back to her childhood and young adulthood. The small child screaming at random intervals seemed to add a nuance of grandchild. Her mom was there too. She was in the house on Phillips Avenue and we went home downstairs to where Aunt Jean lived. These were confusing thought patterns.
And eventually we both went to sleep.
Today after I took her to exercise class, Cheryl ate the leftovers that she brought home for lunch . She suggested that we go back there for dinner or lunch again. We will. They have food that Cheryl likes. Suggesting that we go back is a big endorsement from Cheryl.
I might get a different bier though.
Sadly this room was decorated with weapons of war or krieg as the Germans would say. All in all a good family visit.
Jan? Jan? (me – what?) Do the doctors know if this Cesarean is scheduled or not? (me- I don’t know. I’m sure they will do what’s necessary. Try to get some sleep.) Okay. Wake me when it’s done.
Early morning as well as late evening conversations can be odd sometimes. This one from last night as she was falling asleep stuck with me.
Cheryl was interested (it seemed to me) in going to bed at the normal time about 10 PM. I helped her through all the normal changes and toileting. Afterward I sat up to read but could not wrap my head around the story I was reading. I came to bed at 11 PM.
After I laid down and got comfortable she started talking to someone. I thought at first she was talking to me but listening I realized she was having a conversation with whom – several people – she was seeing in her head. She has had these episodes in the past but not for some time. Last night and early morning her hallucinations were strong. At least three people were in the room – Nancy and a couple of smaller children and Zachary. They talked about church topics. They talked about playing. they talked about what was best to eat. They talked about books and stories. They talked about breakfast.
After an hour or so of this I got up. I must have gotten used to her murmurings and fallen asleep for awhile but I awakened at a little after 1 AM and could not return to blissful slumber. I got up and pulled the sofa-bed apart with the intention of sleeping in the living room for a couple hours but that did not work out as I heard her moving around shortly after I got up to switch rooms.
When I reentered the bed room she was perched on the edge of the bed trying to get up in her hop-hop mode. I helped her up and she needed to put her imaginary earrings on the dresser in our bedroom.
I suggested to her sleepy, dreamy, hallucinatory self that she sit on the toilet while we were up and she did that. I changed her overnight incontinence stuff and while I was doing that she saw imaginary wetness on the floor as well as several imaginary insects moving about. We captured the imaginary insects after getting off the toilet and searched for more. Afterward she announced that she wanted scrambled eggs and ham. I sadly reported that we were out of ham and I would have to go to the store the next day and fix that but I could do scrambled eggs and toast. She was okay with that modification.
I made her scrambled eggs at 2 AM.
After she ate we returned to bed. I did not hear the living room clock strike three but that may have been because I stopped its pendulum while I was laying on the sofa-bed earlier next to it counting the ticks and the tocks.
It is 10 AM and she is still sleeping and I am wondering how long to let her sleep. We plan to meet one of her friends for lunch today at 12:30 or so. And what should I offer her for breakfast. This day is starting out very hard for Cheryl and very slowly.
What Rose Forgot is a novel by Nevada Barr. Rose, the main character, is struggling with mental illness and memory loss brought on by some unseemly characters in her family. Her granddaughter helps her through the dilemma that she finds herself in. But one line early in the novel stuck out – memories fell into her head like random boulders from a bucket high up all jumbled with no relationship to each other.
Cheryl’s conversation, especially in the evening, is much like that. Kathy came to visit her today and I noticed that her conversation and memories are like that during the day also. Kathy ignored any incongruities if she knew they where there. Had I been sitting near Cheryl I would have had to correct her memory of people and events. It is really, really difficult for me to not jump in to the conversation to fix things.
But I am getting better at it.
I am not certain that I got the quote right but the image is there. Random chunks of memory come into Cheryl’s head. It makes me sad. Sometimes she realizes that this is happening.
Tonight when we came back from getting ice cream at our favorite ice cream store, she went off looking for her Mom in our condo. I did not stop her or correct her impression. And, to her, perhaps, Elaine was there.
I am in pursuit of her calmness of mind. And I admit it makes me anxious.
Like many old retired folks we have a Medicare advantage plan. When I investigated these a few years age I came to the conclusion that the United Healthcare plans offered through AARP seemed to be appropriate for our needs. There have been several adjustments and realignments over the past several years and I am not in any way an insurance expert but so far the system has worked for us. United Healthcare has a feature that sends a nurse practitioner once a year to visit to check their clients if they want to participate. Participation is voluntary. Cynical me wonders what benefit the insurance company receives from visiting it clients but practical me says there is some benefit otherwise they would have no reason to pay a skilled NP to drive around the countryside to visit clients. There is no altruism in corporate america. I agreed to a visit by Whitney on Thursday of this week.
UHC Housecalls (Whitney) came to visit that day. We went through all the medications that Cheryl takes for Parkinson and my few meds for high cholesterol and too much eyeball pressure. There is a modified MOCA test – draw a clock, remember three words while drawing the clock. The normal blood pressure, heart rate and lung listening happens as in any wellness visit. There is also a clip on gadget and an app that runs on Whitney’s laptop that produces circulation information. Good news we are both alive! And one of us could remember the three words.
In addition to Whitney coming to visit, so did Nancy, a friend of Cheryl’s from church. In fact Cheryl has had a different someone come to visit every day this week. It has been busy and that tires her out.
Cheryl was showing signs of exhaustion on Wednesday. In the evening about 11:30 pm she needed to go home. I was heartbroken that night and tired myself from the time change. The impostor (Capgras) delusion seems to appear about once every two weeks. I put her in the car and drove her around the block. I am usually terrified that this time it will not work. This night it did (still).
Today it was hard but busy. Writing this on Thursday, I wrote that I forgot her pills at 1 pm. Damn. That will mess up her mobility and her mind. Later on Thursday I noted — it is almost 8 PM and I think she is back to her normal for now.
Cheryl could not complete the modified MOCA test on Thursday. Today, Friday, she went to lunch with her friend Barb. The week of visits, no matter how well intentioned, is over.
Tonight we went out to get dinner at one of our favorite little restaurants. St. Patrick’s Day pub crawls where in full swing on Friday night. [Éirinn go Brách] The food was good and the crowd was raucous and loud. St. Pat showed up on the second day of March madness.
Adjunct_Wizard 