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.
Birthdays are a big deal to some. Not so much to others. Cheryl got several cards from friends through the mail.
This vase of flowers magically appeared on Cheryl’s birthday with Natalie when she came to clean. Her sister Nancy had sent flowers for her birthday and Natalie selected them.
In the evening we went to a little cafe nearby to celebrate Cheryl’s birthday with our daughter, granddaughter and her brother. As I was putting Cheryl’s walker out of the aisle in the crowded little restaurant, a woman seated by herself remarked that I was a good husband. She had watched me guide Cheryl into the booth near the window. I told her that I try to take care of Cheryl as best as I can. She told me her husband had passed away a few years previous and she missed him greatly.
When I paid our tab for dinner I paid for her dinner also.
Today is Cheryl’s birthday. She is not sure how old she is and that is a good thing in many aspects. When I remind her, her answer is, “Really?”
Tonight we will go to dinner to celebrate. It was a spontaneous decision on my part. Some of her family will come too. With parkie’s many decisions are spontaneous. One has to determine how the day is going.
Her sister Nancy sent her some spontaneous flowers. Our niece, Natalie, brought them with her when she came to clean our condo today.
Spontaneity is the spice of life and living in the moment is something we all need to do more often.
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 really enjoys these classes when I can get her moving quickly enough to get there. Joelle leads a cardio (seated) that involves a lot of dance moves (shoop, shoop) and alternately boxing moves in time to the music.
Unfortunately I had the sound off when I made this video the other day. The rest of the staff joined in as background dancers.
One of our regular social gatherings is Pizza Tuesday. (Yes, I know it is supposed to be taco Tuesday.) Most times it is just a few of us, maybe 3 or 4. Occasionally Cheryl’s brothers and sister show up. Last evening in a moment of serendipity her cousin and many of his family showed up to celebrate their father’s birthday. Cheryl got a hug from her cousin that she really has not talked to for years.
Bob’s second wife died about a year ago and I took her to the funeral mass. We did not stay for the gathering after because Cheryl was not doing well that day.
Cheryl did not talk much to Bob. For one thing he was there to celebrate with his family in the big front room. For another although he may know of Cheryl’s on going battle with parkinson and dementia, he may not know how long it takes for her to get a thought out. Sometimes her thought is gone before she can vocalize it. I have been watching this for years. At home I merely wait.
Others have a hard time waiting so they want to guess what she is trying to say. Forming thoughts and then assembling complete sentences, keeping track of any names that need insertion is a hard task for Cheryl these days. I only help when I am very sure of who or what she is talking about and even then I can be wrong. Parkies can change topics in a heartbeat.
Last evening, however, was special and when we got home she wanted to do two things. Get Bob’s telephone number so she could call him and talk. And sit outside for awhile and watch the clouds go by to expose the moon and the planets. Venus is very bright and the moon is several days past its crescent phase. Watching the night sky lately seems peaceful for her.
I asked her siblings for Bob’s phone number. She now has his phone number for when she wants to call him.
As we left the restaurant her brother, as he often does, said to me thank you for taking care of my sister. My inner thought to him is I love her dearly and we made a vow to each other fifty years ago. What I say to him is “you’re welcome” and that bothers me sometimes. Some day I will pour my heart out to him. He is a good and kind man.
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.
Sparingly. Although it does amuse me. Mostly. My immediate life is not driven by my need to read social media posts. I am old I guess. It is much more fun to sit with friends and family, have a beer or soft drink and chat. Face to face. Mano a mano. In close proximity. Body language is part of communication. Social media has managed to strip away everything other than the words.
Adjunct_Wizard 