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 seems to me that I spend a lot of time waiting for the next thing. I started this about a week ago. I did not know where to go after the first line. But late last night after I finally convinced Cheryl to lay down I realized that sometimes I am waiting for life to smooth out for a bit.
Care partners often do not realize how important it is to have relief.
I wait to find out if Cheryl is going to organize her office.
I wait to find out about if we are home or if we need to fix that by driving home.
I wait to find out if getting to bed is next or if this is a late night.
Things are more mysterious at night and I am tired and on guard against argumentative discussion.
Last night we drove around to get home again. Because I was bored I picked a different circuit. That was a mistake on my part. I realized my error after I turned and she said, “This is not the way.” Oopsy. Now she is concentrating on landmarks which caused me to start a running commentary about streets and where were. Luckily she came with me and said we have to turn left at the light.
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.
We had a great visit from all the kids and many of the grandkids. On New Year’s Eve I spontaneously asked our children if they had anything special planned for New Year’s Day. I asked if not would they like to gather around our table for a meal in the afternoon. I suggested about 4-ish. They all said yes.
I stole this idea from Frank C. Church. Thank you, Frank for a spontaneously good time.
Who can tell? Maybe a new family tradition? Traditions have to start somewhere. They are kept up if everyone has a good time participating. Zachary certainly had a good time. He had not seen grandma’s marble race before so Mom and Gavin helped him put it together.
Most importantly Cheryl got to have everyone at her house. She smiled and laughed at the conversation and activity. It was simply wonderful to see her smile.
Her smile and laughter are less as we head on our journey of Parkinson. Yesterday was very special to her and to me.
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.
Teasing and associated humor — We have been married more than a half century. That qualifies us as an old married couple. At one point we could finish each other’s sentences. I could understand what she wanted by a look. We would banter and tease each other. With Parkinson that is all gone. Mostly. For maybe an hour or two after breakfast mild banter can occur but later in the day she will start thinking that I am picking on her. The switch is sudden. Sometimes I miss it.
Implication, inference, analogy — the parkie brain seems to struggle with inference. But she will still do it to me. The garbage can is near full. Instead of, please take the garbage out. We all do it.
With dementia and memory loss issues it doesn’t work.
Linear logical thought
Ability to follow directions (recipes)
Stick-to-it-tiveness, persistence — the opposite of apathy– is completely gone. I have not had to deal with a child that has ADHD, so, I have no comparison but many of her behaviors seem to mimic this disorder.
Intimacy is very different and difficult… I make no reference to sexual intimacy. That left us a few years ago. These days it is necessary for me to intrude into toileting. Never when I said I do did I think I might have to keep track of bowel movements. It is typically a very private event. PD however brings with it the side benefit of constipation. Memory issues do not help. Self reporting does not accomplish what it might if she could remember the last time she pooped. Hanging on to feces for long periods can send one to the hospital. PD patients should do all in their power to stay out of the hospital.
There are days, and this may be one of them, when I wish for Cheryl’s physical Parkinson’s symptoms to be worse and her mental Parkinson to be less. She actually moves quite well with the C/L in her system during the day. If in the middle of the night she might get up to toilet once or twice she moves pretty well then too. She might be slow and slightly disoriented but at 3 AM I am too.
Late Autumn and Winter is the worst for her mentally. Last evening she stayed up very late; frantically organizing and reorganizing her papers and cards in her office. She eventually allowed me to help her to bed about 11:30 PM. I heard the clock strike midnight before she succumbed to sleep. She had been talking gibberish about the kids.
five repetitive themes
She is often confused as to who I am. I am that other Paul. I am Dad (as I was last night encouraging her to get rest before our big outing with Marilyn.) Some times I am Scott but if not she will ask, “Did Scott go home? Or, Is Scott here?” Some of this is simply aphasia and she cannot find a name in her head. (Me too, occasionally.) If I cause stress in her by insisting on something she will be very anxious about me being around. Insisting is always a bad idea but I often forget that. I try to hedge and let her decide she wants to – go to bed, eat dinner, have a cookie, have cereal for breakfast, etc. Often that works, often it does not. It can be frustrating when you are also tired.
“I want to go home now.” – She believes for a time often late at night that she is not home and wants to go home. Sometimes this delusion is overpowering and I help her find shoes and a coat and I drive her around a four mile circle and home. I reinforce the we are home thought by saying plainly, “we’re home now. I’m glad to be here finally.” That will reset her brain and she starts to think we are home. Sometimes it works only partially and she thinks – wow, this is neat. How did they get all our stuff here so fast?
Recently she has asked how we will get all our stuff home? Do we need to get some movers? I merely replied yes, I will call them tomorrow and set it up. — I wonder how long the “I will take care of that tomorrow” ploy will last. For now it does. She has not yet asked when I was going to call the movers in the morning while I am organizing breakfast.
“We are in Detroit” When Cheryl went to high school she was following the prescribed path to become a Franciscan nun. I met her originally in the summer between her junior and senior years in high school. When she was a freshman, a teacher she had realized she may have some potential in english or journalism and arranged for Cheryl and a couple of her classmates to attend a journalism workshop in Detroit for a couple weeks between her first and second years in high school. It made a deep impression on her. In many ways, when she talks about it, it was as though she traveled to a foreign land. And she thoroughly enjoyed every aspect of it. Her favorite TV show and the only one she really watches is a show called Bob (<3) Abishola which is set in Detroit. Watching the the show, she will tell me stories about Detroit but mostly I think she looks at the screen because some views will spark a memory.
“When are we going home?” Is her theme some evenings when she is sure we are in Detroit. I did not realize at first where she thought we were. I discovered this later through conversation. — I can respond, “We are staying here tonight and going home in the morning. Is that okay with you? It is late and would rather drive home in the morning.” Most times traveling along with this theme she responds with, “Yes that is a good ideas. We should rest first.” Once in awhile the Detroit delusion lingers until morning. It is often gone at breakfast.
It is time for office work — is usually a physical activity. In our second bedroom that became her office when we bought this condo she will spend time organizing. Or doing nothing. It is her version of punding. If she starts doing it at 9 or 10 PM there is no easy fix to getting her to be interested in sleep even when it is obvious to me that she is very tired. She takes a prescription to help her sleep as well as melatonin to help her fall asleep but her will is strong when she decides to – get this stuff organized. It breaks my heart to see her do this mindless activity. Last night I sat with her because the later she stays up the wobblier she gets but her confused mind will not let her see this in herself. In her brain she is a 35-year-old computer database analyst and the deadline is tomorrow.
These behaviors generally occur late in the evening. I sometimes succeed in not being Mr. Cranky Pants. This part of His plan sucks for sure. It is hard to be calm when the Plan has dumped on you and the previous night was smooth and uneventful.
In this season of happy and family and celebration, after I have gotten through all the wrapping and cookie making and other organizational tasks, I slow to take stock of the year. Good things happened and not so good things happened but mostly this year was. It is in the past now.
Throughout this year Facebook is a personal source of joy, amusement, interest, empathy and puzzlement. When some political whiny rant appears, I am puzzled by the things total strangers will say to others that they would not say in person. I am filled with joy at the pictures of children both young and old. I am amused by the various MEME cards that folks post, sometimes without thinking. I am interested in other care giver’s thoughts as they travel down their road of Parkinson. And I am empathetic to their particular struggles. In this collage of pictures selected in no particular sequence are pictures of things, people and MEMEs that appeared on Facebook during the past year and I downloaded to my tablet as I watched the TV news and waited for Cheryl to wake up.
The good things
The joy in Zachary’s face. He always makes me smile.
Luke’s artistic muses in photography
Family
family gatherings
Max is off to Miami University — I am class of ’72
Laurencia is 21!
Cindy Smith
Linda Weisgerber
Kathy Mellen
Mary Jo Horton
Jane Pohlman
Parkinson Community Fitness
UC Health
Jeff and Stephanie’s ELFie – Elizabeth Laura Fisher
Zane and Charlotte
Lydia (think songs from the Music man)
Anniversaries
Anna’s 50th birthday (I love you)
trips and vacations
New people in our lives
Looking back and memories
Learning how to make cookies
Sr. Carren and Nancy Strapp
Visits from friends of Cheryl
Phone calls to Cheryl from her friends
Special friends
small faces and their happiness
Jana Ann
The class I took on being a good care partner (Linda stayed with Cheryl so I could go.)
A new found interest in cookies and muffins
Finding out that adjusting meds, schedules and eating has reduced Cheryl’s upset stomach to non-existent almost. (and the neurologist MDS says bravo.)
Lunch with Marilyn
The not so good things
Constant reminder of Parkinson
Anna’s Fiftieth birthday (wow, I am old.)
Cheryl’s lost memory
Learning how to make cookies (there have been disasters.)
Cheryl’s worsening confusion in the evening
dementia in all its forms – delusion, hallucination, Capgras, sundowner, showtime
frost on the window (I have never been a big fan of winter)
avocados
Cheryl wanting to talk (call) to her mother in the evening (which worries me – I think – unnecessarily.)
Late night punding in her office
These are both incomplete lists. However the good list is already way longer than the not so good list. (And a couple of those are tongue-in-cheek jokes.) I constantly try to turn away from letting Parkinson and dementia drive our life.
I will probably add to these lists during the holiday down time.
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.
We went to one of our favorite places to eat dinner tonight. Friday night with my girlfriend, best friend, lover, mother of our children and life companion. It was a good time. Christmas decorations are everywhere. People are visiting and gathering for the holidays. Bacall’s Cafe was loud. It was full of us old people chatting and eating and drinking and gathering. We were all catching up with each other and the world.
It seems to me that the smaller local restaurants have better service. Those restaurants seem to provide employment to the youngsters in the neighborhood.
Friday night has a special atmosphere. It always has for us. When we were younger and still working full time for others, it marks the end of commitments for the week. Often Cheryl and I would meet for a quiet dinner somewhere. Just us and our conversation was a special time to relax and take stock of things. When the kids were small Friday was often chaos. But those years passed by too fast and it was just us again.
These days I think that it is important to stay with her in her remembrances. If she wants to talk about long ago I try to stay with it. But I also try to gently steer her to the present if she has strayed far off the road. As we were driving to the cafe she asked me where I wanted to celebrate my birthday next week. — Her deceased father’s birthday is next week and her brothers had been talking about meeting for dinner somewhere to commemorate that event.
I am still on a learning curve with this sort of conversation but I calmly reminded her who I am and reiterated the conversation about celebrating her dad’s birthday. I switched the conversation to where do you think we should go? She switched it back to I wonder where Dad would go if he was here. And we went down that road for a bit until we arrived at the cafe.
AHA: Preserve any routines you can. Embrace any memories she has. Calmly help her find her way back to the here and now. Emphasis on calmly and watch the pitch and tenor of your voice.
Date nights are not always for the young. We had a long wandering conversation about the place we were eating. We talked about other places we have been. We talked about family. She had a coke. Years ago it would have been a glass of rose or white zinfandel. I had a gin and tonic. Years ago it might have been a nice single malt scotch. As we have aged we both like sweeter things. It was a good time.
As we were getting into the car for the drive home, one of her old time friends, Donna, called my phone. I almost did not answer. Robo-calls are annoying. Donna had gotten my number from one of Cheryl’s friends that she had met in church. She called to get together for lunch one day after the holidays. A new conversation about Donna happened on the way home. We will have lunch somewhere in a couple weeks.
We had an open and frank discussion about me, my death, if it was okay to date, how I died or was no longer here, Capgras Syndrome, how it was that her mom died, and other topics. I explained “impostor syndrome” and that I was not dead. it took a lot for me to not openly cry as I began to understand her terror at not knowing what was going on around her.
We talked about our love for one another. I told her I would never leave her alone or as best I could not let her miss anything important. We talked about memory and how scary it is to not know what is next.
She was anxious about being home but not thinking she was home. In the midst of that our upstairs neighbor, Joe, bought me a couple cans of beer. A couple days ago we were discussing an article in a local magazine about the best microbreweries in the area. He had found some of the stuff that won.
Cheryl added Joe into the discussion about how she and he were working on the same project at the house. We went around and talked about going home and Joe had brought her home last night. I said that when she woke up she was home? Even though when she went to bed last night she was not home? Yes she said.
I explained to her once again that we were home even though she was unsure that we were home. (Another nuance of Parkinson dementia). Capgras can occur with things and places also. In Cheryl’s case it happens with time.
She knew she was home now.
She seemed calmer afterward. It wore her out and she went to bed early and was okay with me helping her to bed.
Carpe Capgras Diem. (but what a miserable fucking disease.) (sorry)
Adjunct_Wizard 