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.
Ghosts and goblins come out during the daytime these days of the covid wind down and the continued concern for small ones who are the ghosts and goblins. We will see no ghosts or goblins unless we go seek them out in their own habitat.
For our own scary feature to today’s activities, Cheryl got up early so I gave her the 7 AM meds at about 6:45 or so and we went back to bed. She got up and dressed at 7:30 while I napped on until 9 AM. (That felt great!) When I came to the kitchen she informed me that she had taken her medicine. She had taken her 10 AM meds at about 8 AM. I need a new system. I think.
It might be a scary day. So far, however, it is not.
Poking around my photos and ones that I could on Facebook has brought back wonderful memories of times before. I cherish them. These pictures are Halloween through the years and my favorite picture of my mom and dad as Raggedy Ann and Andy. (Truman in sunglasses is not Halloween but it is a great picture.)
Last evening she asked me, are you staying here tonight? To which I responded yes, I live here. You live here? Yes…
We have these conversations occasionally.
I wish that we did not have them but we do. Every day is a new adventure. It is hard to keep that in mind. Last evening I was very hard for me to resist correcting her. She wanted to call her sister to find out who I was. I decided to let her do it. I am sure her sister was confused. I did not find that out until earlier when I sent a message to her sister explaining Cheryl’s confusion yesterday.
Sometimes she talks to me as though I am an acquaintance and it breaks my heart.  That is not my original phrase but someone made that comment to me and I thought, absolutely, that is why it sounds odd to my ear.
I have learned over time, however, that it may just be my perception and may have little to do with what she really feels. It is not possible to know what another person’s thoughts and feelings are except if expressed by the other person. In a mind afflicted with Parkinson’s disease the words may not come. (Aha)
As a care partner the job is two or three times harder because a lifetime of social clues enhanced by 50 years of living to get used to each other’s mood, body language, language intonation and facial expressions has to be ignored. Sometimes those are only partially ignored. It is a mental workout. It is exhausting in many ways.
Her face can freeze. She looks angry. And then not. She can look very ill. Ten minutes later her smile is back and my heart leaps.
Today we are doing two exercise classes oriented toward PD patients. The first is an exercise and stretch series of activities. The second is oriented toward hands and fingers. Exercise helps with many of her symptoms for a bit. Her steps are more lively. Perhaps with her new finger class she will be able to hold onto the cereal spoon and sign her name.
When her smile comes back, my steps are more lively.
Recently I learned a new term. Care Partner. I use the term care giver on this blog as I write little stories about our day to day struggles. I think care partner is a better term for what we actually do. Often I care for her. Just as often she cares for me. It is not a one-sided activity. Interestingly enough I poked “care partner” into Google. I am always interested in what sort of images the great alphabet search engine will find. The very first hit on my list is this link to an article about care partner on Parkinsonsdisease.net.
Last evening we attended a gala fund raising event for PCF which is an exercise and social facility that I take Cheryl to three days a week. They had an awards ceremony and passed out what engineers call attaboys. It is nice to be recognized for work and effort for which there is no expectation of reward or recognition.
I was given a “Care Partner ” award. I thought– absolutely, yes. It is better description of what happens. There is no doubt in my mind that Cheryl cares for me as much as I do for her.
The little people who used to visit are back. That is my own little joke. The little people never really left our home. I was merely ignoring Cheryl’s behavior.
They were back in a vivid sense to Cheryl. This chair arrangement is left over from their visit. She was showing them the pictures on the frame. She went into full on grandmother mode describing the picture to the kiddos.
I asked who was there and she replied Natalie and Max.
We left a little while later to got to our support group meeting. While there she asked if I had called home to make sure the kids were all right. Apparently they were more vivid than at other times in her head. When we returned home she looked for them.
We sat and watched Bob hearts Abishola which is her new favorite show. The kids seemed to be gone for now.
When I tell her that there is no one else here except us I feel as though I am standing in the back of a crowded room saying this to her.
Today, earlier, she asked me to rub her hair conditioner into her scalp. I do this once or twice a week when she asks. She referred to me as “Mom”. I had a little petulant moody reaction and said “I am not your mom.” She said, “No. You are my dad.” I replied that I was not her dad either, I was her husband. To which she said, “But you are the one I love.” (AHA! Edie) She merely could not pull the name and relationship out of her head.
It was another Aha-moment in our life together. It was a very important moment. All of my life as an engineer words have had a very specific meaning to me. Perhaps the words should not when understanding Cheryl’s needs.
Carpe diem — hunt for the special moments of insight and empathy. Those are special. If you miss them they may be gone forever.
The ageless question that I ask myself. Why does Parkinson not allow her to sleep and rest?
Tuesday – dinner with friends; A completely sleepless night afterward. Up, down, up, down. Eventually she slept for a couple hours.
Wednesday — nothing special about it, just Wednesday. A totally restful night. She didn’t move when I got up several times.
Thursday — Exercise class as normal. Overnight a couple odd things; teeth brushing at 2AM and Noxzema face cleaning ( I said not church today) she came back to bed. Leg pain — half in and out of bed at 5AM.
Friday was slow moving. Overnight she slept through although she was awake when I came to bed after reading (11:30PM). This morning for the first time she leaked. She was totally asleep when I got her pills at 7AM. She didn’t awaken for her bladder. She did not act upset about it as she has in the past when she occasionally had mistaken perspiration for a leaky situation.
Saturday overnight she slept peacefully. I awakened her at 3AM or so to use the toilet. She easily fell back asleep. She was sleeping deeply when I got her pills at 7AM. We went to church in the afternoon. She missed her 4PM meds in the confusion of preparing for church at 4:30PM. We had dinner with friends after church.
Sunday morning she was agitated and slept fitfully. She was fidgety in bed. In the morning she was worried about something. We went to my son’s house to celebrate a birthday of one of the kiddos.
Sunday night and early Monday morning she slept little. She was certain she had to prepare for the appointment with her neurologist at 3AM. We read the calendar. I showed her the annoying alarm clock that displayed MONDAY. She slept little if at all. I reminded her several times that her appointment is tomorrow TUESDAY. The information did not reassure her nor did it seem to stick with her even as she insisted she understood what I had told her.
Monday (today) she is still convinced she has a doctor appointment.
… and then Young Sheldon for a while but the young Sheldon is a bit more melodramatic and less fun and funny. She has lost interest it appears to me.
I, however, have become attracted to the rest of the characters. I am watching how the child actors age; a midlife crisis development in the family; Memah (grandmother) deals with life and widowhood; how life in Texas is portrayed. Sheldon’s role is reduced to narrator. He has become a semicolon between scenes. I think his older brother Georgie is getting ready to branch out and chase his entrepreneurial instincts and fly to the world of small business.
As the last season ended George (father) is struggling in his marriage and is feeling a little put out by Mary (mother) who is certain only she can take care of the family. He winds up going to the local bar to have a beer or two and enjoy the company of others rather than stay in a bickering duel with Mary that he is certain lose. He meets up with his newly divorced neighbor and they chat about old times and other things about their lives. They both whine a little to each other. George has some pain in his chest which they perceive as a heart attack.
The beginning of the new season episode tells us that it is just gas. Everyone is relieved. George and Brenda (neighbor) spend some time working through their (perceived) guilt about talking in the bar. George with his newly divorced neighbor is searching for meaning in life. Brenda is simply looking for companionship after her marriage fell apart. They finally sit at her kitchen table and she suggests that they both just wanted to feel special for a bit. A very succinct conclusion to the show.
All of us have a need to feel special for a bit.
Folks with a chronic condition that makes everyday living difficult want to feel special for a bit but separate from their condition. The condition is not them.
Restful as an old man with the bladder storage capacity of a peanut
Satisfying as a rock star on speed
Quiet as Michael Jackson after practice for a concert
As restful as an hour after sixty-four ounces of colonoscopy prep
Rejuvenating. Much like being chased by a mother bear after you’ve noticed her cub behind you on the Appalachian trail.
Adrenalin rush leads to melatonin misfire
Last night was a particularly unsatisfactory overnight experience. It seemed as though Cheryl did not sleep at all nor did I. I tried a new idea out on myself. Instead of becoming angry with her disease, her insomnia and myself for getting angry I laid alongside of her thinking of funny ironical and satirical ways to describe insomnia. It is hard to be creative at 2AM. I kept falling asleep. When I awakened again, perhaps an hour later, feeling a little guilty for falling asleep, I was worried that today would be especially bad.
Yesterday we had dinner with my cousin and his wife visiting from the west coast. It was a pleasant afternoon and evening full of catching up and conversation. Cheryl seemed to enjoy it even though her evening meds attacked her and she sought refuge on a couch in the back office of my cousin-in-law’s condo. I think that embarrassed her even though we assured her that she should not be.
On the way home she expressed how much she enjoyed herself. When we got home she hunted for comfy clothes and we watched a favorite show together. She went to bed at her normal time around 10PM and I sat up to read for awhile. When I went to bed later she was still awake but that is not unusual. She is often awake for a bit after she lays down. Sometimes it is a long bit. Last night it seemed to be all night.
Early this morning she told me that the kids needed breakfast. I think I raised my voice when I told her that there were no kids living with us but she had left the bedroom. I am sticking with that excuse.
Someone said that you can sleep when you are dead. What a morbid thought that is. So, I began my thought experiment. Some of them I remembered this morning.
Haiku: Adrenalin rush; Sleep is disturbingly sad; Melatonin fail. 🙂
Perhaps I will get my sonnet maker out and think about that for awhile. Or I could read a book and nap later today.
Lately I have been experiencing a bit of what I think of as Caregiver Burnout.
We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.
Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.
I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂
An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.
Over time I have taken over the duties that she used to do in our home.
In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.
It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.
At least we are vaccinated and boosted. The road is pretty long even when not visible.
Our little condominium group of fifteen units was built approximately twenty-five years ago. When we purchased this condo five years ago we were very blessed with the fact that our nephew who was also a real estate guy wanted to buy our big old hundred year old house from us as is. Additionally he had this condo in his back pocket ready to sell if the right buyer came along. At the time he was also working as an organist for one of the larger Catholic parishes in the area and this condo was owned by the pastor of the church. Agreements were made, hands were shaken and there was enough slack in the schedule that we had the old wallpaper stripped, the whole inside of the condo painted and carpets steam cleaned afterward. The carpet was able to dry for about a week before we moved in. All of this happened five years ago next week.
Our upstairs neighbor who is resting peacefully with hospice is one of the original tenants. There are two other original tenants (owners). They are all in their nineties.
A young couple who were recently married moved out. She chased her job to Los Angeles. He chased her there. They are very much in love and will do well. Her mother moved in two days ago to fill in their spot.
Our upstairs neighbor subscribes to the Enquirer as do we. Cheryl likes to read the comics and work the puzzles. In the Sunday edition two to three pages of obituaries are reprinted from Legacy.com or wherever they were originally published. Cheryl likes to read the obits and to speculate as to whether she might know anyone.
Our upstairs neighbor used to get up at 6 AM to take a pill she once told me. She would pick up her Enquirer and my two papers. Our papers she would stick into the banister to the upstairs and then walk up those stairs to her condo. We talked about this not long after we moved into our home. I told her I would gladly bring her paper upstairs. She is fiercely independent. She said to me, thank you but no. I very rarely beat her to the papers by the door anyway.
On garbage pick up day she would extend her morning activity to bringing the empty refuse bins close to the building so that the other residents did not have far to walk to put them into the garage. On rainy days over the last couple years she would leave that duty to me. The first time she did that I worried that she was in ill health. When I tracked her down later she said no she was not but the garbage collector had been a bit late she had already collected the papers before he had gotten here. She thought I would bring the bins in by the building. I did not know I was being trained for my new job until this past summer when cancer caught up with her. These days I pick up the papers and carry one up to the ledge in front of the second floor landing so that whoever reads it can find it.
A few months ago she had a surgical procedure to mitigate the progress of the cancer. A few days ago it became apparent that the procedure did not work as well as the doctors had hoped. A dozen or so years ago my sister opted for mitigation after being diagnosed with myelodysplastic syndrome. I think of my sister whenever I come into contact with a dire situation with someone I know. At about the same time my father elected to not mitigate the situation he found himself in after a cancer diagnosis. The outcome was the same for both my father and my sister.
It is possible that our upstairs neighbor is resting peacefully in the same room that my father spent his last days on this Earth. Recently she was moved to the same facility.
When the time comes may she be at peace.
The world will be a sadder place when she is gone but we who are still alive are secure in the belief that she is in heaven. I am glad to have known her no matter how brief that time has been.
An Update: Mary Ellen Welch passed from this life on Wednesday, October 13, 2021.
Adjunct_Wizard 