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 is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.
My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.
Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.
THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe
This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)
The Last Day
Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.
Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.
Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.
Red flag day
There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?
… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.
Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”
“What were you you thinking?”, I asked.
” I miss talking to her.”
It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.
Day Three
I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.
Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)
The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.
Cheryl delights in getting phone calls from people. It is a simple way for people to talk to each other on a direct basis. It is not a public conversation like so many on Facebook. Cheryl does not understand Facebook. You say to yourself- what is there to understand. Exactly. Now you know where her mind is.
About a year ago I wrote a long letter to her brothers and sisters in the hope of one or several of them would occasionally call Cheryl on the phone. Perhaps it was too subtle of me to suggest that they could do that in amongst a long list of other things that could and would help her to stay connected. They are not as communicative as I had hoped.
Cheryl, however, is always hopeful. When we return from anywhere – literally anywhere – she always wants to check for messages. She does this even though she is unable to remember how to do that. We still have a “landline” although it is no longer connected to the land. I keep it to give the robocallers something to do. Sometime this nice man in India (or Pakistan) who claims to be Mike with Medicare calls. He rarely leaves a message but once in awhile a real person does like my brother-in-law in Florida or a friend of Cheryl’s who does not understand her plight and still calls on the sort of landline. I can check for messages on my computer by logging into my Spectrum account. I suppose that is too much technology but I like it.
I think I miss the days when the phone was a phone. I think I miss phone books too. It was easier to track down folks that you had not talked to for some time. A method to reconnect was in the phone book. People who did not need connection had their phones unlisted. The roboes did not call as much then.
We used to have dumb phones. Now the phones that everyone carries around are small hand held computers that people rarely talk on. Many seem afraid that we will miss something. My sister-in-law walks around with a single inexpensive earbud in her ear that looks like a cicada in case someone calls. Maybe she is a secret telemarketer like Mike from Medicare.
When I was still working as an engineer, if I was talking to someone in my office, I did not answer the phone on my desk. Once one of the technicians and I were discussing a problem we were having with a machine and the phone rang – with an actual bell. I ignored it and he said – aren’t you going to answer that? My response was – not right now. You and I are working. If it is important they will leave a message or call back. He seemed bemused that I did not answer it right away. Others I knew would and if I needed to talk I called them on the phone even if they were in the next cubicle.
Many broadcast messages on Facebook and twitter and tiktok etc. I think that is like trying to find information in a noisy pub. It takes time to narrow down the source and then details may not be initially forthcoming. You might have to shout your question in a pub – you might have to ask your question in public on social media. It is possible to get an answer from a totally disinterested party. Who needs that?
Call Cheryl on the phone. She really enjoys conversing even though she is not good at it anymore. Be patient. She may really have a hard time finding words. Keeping connected with others is important to parkies and care partners. It gets lonely sometimes on the road. Conversation is crucial to good mental health.
Tea or no tea today? A morning cup of tea after the bowl of cereal breakfast and taking time to work on the puzzles in the newspaper was/is her favorite morning wake up. This is changing. It is more random less routine.
Get ready for church on the wrong day – this past Sunday after three tries, we made it. We did not get up at 2AM to get ready for church at 10AM. On Saturday we visited our son and his family. That activity left Cheryl exhausted and ready to sleep when we arrived home. Perhaps the moral of the story is a good nights rest and my assurances that she had plenty of time to take her pills rest and take the 10AM dose slightly early allowed sleep without anxiety?
Blank stares at the computer screen… The screen that used to be second nature is now often befuddling.
Old messages on the cellphone – seem confusing because dates are confused and not meaningful. A year ago I had the brilliant idea to get Cheryl a smart phone so that her brothers and sisters who seemed to communicate often by group chat could read their messages directly. She has long been a email communicator. Initially she adapted well. As time went on I realized that not only was she reading old emails as though she had just received them but she was doing the same with old text messages. Sometimes emergency responses were sent back to a five month old text.
Her sisters have adopted the use of several emoji hieroglyphics that are meaningless to Cheryl. This particular one — 🤷♀️ — a little girl with her hands up at her shoulders which could be used for “dunno” or “whatever” or a woman shrugging her shoulders in frustration is particularly meaningless to Cheryl while it is particularly meaningful to her sister.
Cute little whatever girl.
I think of the new smart phone now as “almost a good idea” and recognize that I made a mistake. Her sister has either wisely or unconsciously returned to the practice of sending the messages on the chat about another sister in Florida who is very ill with the Covid-19 virus to me. I interpret those to Cheryl. Cheryl seems comfortable with that. I leave out all the emoji icons that seem to clutter up the chat line and frankly mean little to me either.
Poor sleep patterns produce a late morning and long naps. It is a situation that feeds on itself. Sleeping late produces poor sleep at night which causes napping which produces poor sleep at night and on.
And the morning question, Where are we? worries me the most. When Cheryl describes this it is an out of body experience. She knows that the furniture and decorations are much like hers but cannot make the connection that she is home. It too seems to occur after poor sleep that she has awakened early from. In the morning twilight her brain is confused. Two days age she asked, Can you tell me were we are? (Tears came to my eyes before I could stop it.)
She forgets the why or who of things on the bulletin board. Below is information about our grandson showing an amazing growth spurt over 24 months. Seven months or so ago when this was posted on the bulletin board we talked about it extensively. We talked with the parents, with the neighbors, with friends. On this day seven months later she asked, what is this for?
Forgetfulness is more prevalent than merely that which accompanies old age. It explains many new behaviors. The information about our grandson above is just one of them.
Parkinson’s is physically annoying and then you forget about it.
Adjunct_Wizard 