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.
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.)
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.
One would expect it to be okay. After all it is “Fall back”. A hour or more of sleep seems at first glance, a good thing. It depends on what you are used to doing.
Somehow it does not turn out that way. Tonight and through tomorrow there is a total eclipse of the moon. Things will be better. Time moves on.
In an amazing amount of support for our dear friend Linda, Cheryl was able to fall asleep and stay asleep over night. She slept well and this morning she awakened to the 7AM alarm put out by the loud and annoying alarm clock. The past few weeks she has trained herself to ignore it.
Diana, Linda’s sister and very special best friend, left us last week. Visitation for friends and family happened yesterday evening in the afternoon. I thought that would be enough for Cheryl. On the way home from the funeral home we stopped for a bit to eat. Between mouthfuls of hamburger and a review of the dessert menu she told me that she wanted to go to the funeral tomorrow. I reiterated the fact that the funeral mass was across town and at 10AM meant that we would be leaving the house at 9AM. No matter she said she wanted to go.
I told Cheryl she would have to trust me that I would get her up and moving in time to make it. It is very important that you sleep well overnight, I told her. She said she would and she did.
This day is to remember Diana Sehlhorst. Diana came to our condo a couple times. Once after her husband Dan passed away Linda was having a conversation with her about moving to a smaller place. Linda did that after my cousin Frank died many years ago. Linda bought a condo as part of an old home overlooking the Ohio river. Ours is a newer building overlooking the trees in the back and a great view of the sunset across the valley from our parking lot in the front. Diana was looking at options. What she eventually selected was way different than both of those.
I wrote the event on our calendar and posted it on the morning erasable board. I got Cheryl up, helped her to toilet, found her comb and glasses. I went off to get Frosted Mini-Wheats as requested. I asked again if she wanted to go to the funeral mass. Cheryl insisted that she still wanted to go. We left in good time and Google maps guided us to the back of the church property because that was the swiftest way there (allegedly). I navigated my way around the block to the front of church.
Sitting in church waiting for the start of the ceremony I noticed that even at a sad event as a funeral some folks naturally smile. Even with despondency, tiredness and family sadness smiles appear. Little children make older folks smile. Diana had many grandchildren. Not everyone is capable of smiling at somber events. I think that I am not. Even in death there is rejoicing. The comment, “She’s in a better place.” is a tribute to death as a state to aspire to. Funerals sadden me.
We arrived in good time about twenty minutes ahead of the scheduled start. As the ceremony got started and Diana came by in the casket, Cheryl needed the restroom. As Diana came in we headed out to the restroom in back. And we forgot the purse.
At communion Cheryl told me she did not want to go up for communion. After the restroom we sat in one of the rear pews. St. Lawrence church is a long narrow building constructed in the old form of shaped like a cross. It would be a long walk. I went to communion , collected the purse on the way by our previous pew and returned with host. I broke it in two and gave her half. She said, amen.
Diana’s son at the end of mass delivered a small discussion of a lesson he learned from his mother in his impressionable early teen years; If everyone gives 100 percent it’s easier to meet in the middle. Words to live by, I think.
No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.
Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.
After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.
When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.
A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”
I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)
After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.
She was still awake when I came to bed after reading for awhile. This conversation ensued.
C. – Dan is that you?
me – No it is me Paul.
C. – Oh. You’re here now?
me – Yes. Is that okay?
C. – Where are Jan and the rest of the kids?
me – Gone now I guess. They must have gone home.
C. – Okay. Are you staying here?
me. – Yes. Try to get some sleep. I’ll stay here with you.
In the morning as I got her awake. I had checked on her a few times earlier but at quarter ’til ten I gently urged her awake. She said, “There were a lot of people around here last night.” I replied, “Who did you see?” She replied, ” I didn’t see anybody but I could hear them.”
When she sees people they are very real to her. Before going to bed we had tried to play Scrabble for a bit. Scrabble was her favorite game for many years. We had not played it for about a year and a half. I thought I made a cool discovery. I tripped over a Merriam website called scrabble.merriam.com that helps to find words with certain letters at the beginning, end or containing them. I told her about it and showed her how to search on the website look up page on the laptop. It was too much for her.
She became tired and put on pajamas and got ready for bed. As i helped her take her bedtime meds, she asked me something about her sister Jan. She wanted to save some information for her about the upcoming Sunflower Rev it up for Parkinson’s fund raiser. She then asked me for Jan’s phone number.
It is hard for me to get a grip on conversations like this. I start first by asking if she knows where Jan is. Sometimes she remembers Jan is deceased. When she remembers this I tell her to merely close her eyes and talk to her. This time however she did not remember that Jan was no longer here. I reminded her that Jan was in heaven to which she replied, “Yes, she is talking to mom about it. Do you think you can find a number?” I told her I would look for it in the morning.
It is morning and she has not asked me for the telephone number yet. But there were a lot of people here last night in her head.
Pretty soon she will awaken. In a few minutes it will be eight hours of uninterrupted slumber for her. The LOUD AND ANNOYING ALARM clock is set for 11:30 AM.
PST — again
I must be getting used to this sleep or lack there of activity. I got up with the first alarm at 7 AM as I always do to get her meds. I reset it to lay down for awhile. Cheryl did not stir.
It is summer time so even though the blinds are closed the bright summer sun brightens the room to, for me, unsleepable conditions. I got up and brought in the trash bins and fetched the paper.
I feel refreshed. My old man’s bladder didn’t disturb me from 3 until 7 AM. Sweet.
Nice. But she has slept for about ten hours so far. I know that everyone sleeps for different amounts of time and Cheryl has been struggling to sleep well the past two days but I worry about the changes in her sleep pattern.
And at the same time when I look inside my own self and think about it, I cannot change how she feels. I cannot change how the disease progresses in her metabolism. I can make her comfortable.
Recently Cheryl Hughes wrote about quality of life and what that means to her and her husband while he was still alive. She makes some good points but I ponder about my view of quality of life is something that I have projected onto Cheryl.
Perhaps on some days she needs twelve hours of sleep. Perhaps on other days she will need a mere four hours. (Those days will be tough.) As her care partner I hope that I can understand that nuance and help her rather than being angry. Angry is a label I place on feelings of anxiety, worry, concern, and empathy for her as her body deals with this debilitating debacle.
It may be all for naught. Recently we got our second covid booster. Perhaps she is reacting to that shot. Neither she nor I had any real reaction other than a sore arm with any of the shots so far. It is simply not understandable what is Parkinson and what is not. It is easy to blame the parkinson when most things are simply old age. Her sometimes in and out dementia inhibits how she tells me what she is feeling. I attempt to be patient and understanding. Sometimes my attempts fall sort.
Are you gonna help me sing?
Some people live their dreams Some people close their eyes Some people’s destiny Passes by
There are no guarantees There are no alibis That’s how our love must be Don’t ask why
— Toto
She is slowly waking up in the bedroom. A new day dawns. I have Alexa playing music by Toto. They were on CBS Sunday Morning today. Perhaps I will get to ride my bike today.
Last night was a peaceful night. Cheryl laid down in the big new bed at 10:30 or so. I finished up a couple things and joined her at a quarter ’til 11. It was a restful night. I awakened to go to the toilet at 6:30 am and so did she. Cheryl laid down again but I got up.
At about eight I went to check on her. She was awake laying in bed. The creaky door had startled her. I apologized for wakening her from her dreamy state. As I closed the door to return to the living room this conversation ensued;
Cheryl – Who am I?
Me – You are Cheryl.
Cheryl – And who are you?
Me – I am Paul. We’ve been married for about 50 years.
Cheryl – Well, happy anniversary!
I do not know what to make of this conversation. As I left the room she added, I love you.
I can understand that in the early morning hours she is a little more confused than normal. She is still tired. I do not know how well she slept. I can report that the couple of times I got up overnight she was in the same position. She moves little when she sleeps during the night. At about 5 am she was having a conversation with someone in her sleep but she often has these conversations. I do not always hear them.
We will see what the day brings. So far, my youngest son has invited us to dinner on Father’s Day which is Sunday.
Adjunct_Wizard 