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 was early afternoon. It was about an hour after she had taken a dose of meds. She was standing at the kitchen sink. Her dyskinesia was noticeable. Her conversation was anxious.
She was worried about what was going to happen with the occupational therapist … I think. I tried to convince her to sit and rest for a bit until we had to go there.
I went to putz in my office. Alexa was playing Rod Stewart old standards from his Great American Songbook album. Time after Time came on “… so lucky to be loving you” a waltz or foxtrot. I asked her if she wanted to dance. The song was a favorite of ours. I turned it up a bit and coaxed her into the space between the dining and living area. She put her arms up around me and I did the same. We hugged and danced in place. She burst into tears as some Parkinson’s emotions took over.
Me too. We took a moment to feel a little sad about our current situation. We took a moment to let the emotion wash over us. At that point in time life was overwhelming. We had to let it be overwhelming in order to move forward with life some more. It is okay to lament life for a bit.
The song ended and we sat in the living room. Rod started singing, “I see fields of green, red roses too…” She watched some of the pictures go by on the Frameo that Anna gave her a couple years ago. She cried a little bit more and enjoyed the nostalgia. And then we were ready for life again.
It occurs to me that old married couples have heard each other’s stories many times. Idle pleasantries between acquaintances and friends usually lead into a story about some past experience. It is harder to do with old married couples. They have heard the stories. Often they both participated. Aging and PD memory loss have changed our conversation about trips, children, childhood, food, children’s sports, many things.
I am a pretender often. She may forget who I am as she is talking. She may forget I was there; an hour ago, a week ago, a decade ago. I might forget I was there a decade ago. She wants to remind me of someone else from her childhood, someone I should know.
I work on my small talk with her because she will find a story from her childhood and it is calming to her to tell me the story.
As I think past all of that and how I can help and respond to Cheryl I still worry when she says to me, ” I’m ready to go home now.” She does this near bed time.
Lately she seems to merely mean that she is tired and wants to go to bed and rest.
Has she apathy? As we move forward it seems to me that she cares less about day to day activities. She seems to recede into her own thoughts but not as a prevailing occupation. I think of it as apathy-not-quite. When she gets in this mode it’s often temporary. She is tired from some activity.
Specifically activities like taking a shower, getting cleaned up, physical therapy sessions or exercise classes are obviously tiring for a PD sufferer. Something as easy as thinking about what is next seems to tire her out also. It like a temporary apathy. Procrastination?
It starts with, ” I don’t think I can go to… exercise class, church, physical therapy…” Admittedly it takes a lot for anyone to be motivated to exercise. It was not a big part of our lives when we were younger. Neither of us were sports buffs. My main sport riding my bike. There is a solitude to doing that which I am unwilling to give up or share. As her care partner, it is frustrating for me that she cannot observe how much she is helped by exercise and her PT sessions. She seems to not remember. It seems like she is going merely because I am taking her there.
When Cheryl gets in this mode (mood?), I turn the corner to something else. I am resistant to letting her go on and isolate herself in her little office area thinking, punding and organizing. I take her out. Anywhere works as long as it is out of our condo.
Yesterday I took her one of our local county parks that we have not visited for a long time. Afterward we went for ice cream at a nearby Dairy Queen. I had planned to make dinner at home but she suggested we find barbecue somewhere. This being an odd suggestion because it seems to upset her stomach often and she says never again later in the evening. We did not find the barbecue place to be amenable to folks with mobility issues so we landed at one of our old favorites and ordered something different than we usually get so the newness was preserved. On the way home she thanked me for taking her to Lake Erie and she told me a story about when she was very young.
In the early days of her father running his own gas station which was a life long dream of his, he rarely took any vacation time. It seems one of his friends had a vacation cabin up near Lake Erie and not far from Port Clinton. There is a park nearby called East Harbor State Park. Our walk by the shore of a much smaller lake in the park much closer than Lake Erie must have taken her mentally back to her childhood and a very fond memory. We visited the same area a few years ago and visited East Harbor. She talked at length about the trip with her mom and dad. She thanked me for getting her there and back in the same day.
I started this writing and contemplating apathy, but maybe it’s projective (mine) apathy? Or predictive apathy? Or apathy is the wrong word? (indifference? passivity?) Or is it poor sleeping patterns? This morning she got up at quarter til ten which means that she was in bed for about eleven hours. She awakened this morning from the same position she fell into when she got in bed. On the previous evening she went to bed very late after midnight and slept very little. (As a result I slept little also.)
Is apathy and memory related? I wonder about ideas like this. Perhaps she cannot remember that she seemed to enjoy herself the last time we went there? Wherever there is.
When I finally teased Cheryl awake this morning, she opened her eyes and asked, “Is Mary Pat here?” An amusing opening question about the day. I smiled and told her, ” No Mary Pat is not here. I think you were dreaming about her.” I have no idea where the Mary Pat (a childhood and current) friend thought came from but she has talked to her a couple times over the past few weeks.
I encourage her to talk to her friends when she gets excited about some memory or misconceived thought. Many of them have had strange conversations with her about things. I used to be embarrassed for her and, at first, discouraged these phone calls which she often decides to do later in the evening. But as I thought about it I decided that it was not my place to absorb or accept or become embarrassed for her. Her friends know her state of mind. They are wonderful people and she is blessed to have them as life long friends.
Focus, cognitive abilities, caring, likes and dislikes are all related to memory issues. Staying active no matter how small that activity is helps.
Cheryl Hughes posted this article in her blog which made me think about the helpful folks around us.
Last evening we had dinner with Cheryl’s sister Nancy. We have been doing this more and more. It is helpful to me in a couple ways that Nancy might not think about. Nancy, firstly, is not dealing with any dementia. Her conversation seems to go in a straight line. That fact by itself often provides relief to me. Over the course of my working career I traveled to other countries and many of these did not have english as their base language. It was always a great relief to hear American english from the people around you waiting for an airplane back to the states. Cheryl’s mingled conversation is much like trying to make sense of a foreign language with little preparation.
The second thing is that when Nancy talks to Cheryl she is accepting of whatever Cheryl might say. Cheryl tells her about the children in our house, their sister Janice and other thoughts as they occur. Nancy does not correct or suggest anything different. Sometimes she will ask for clarification if Cheryl has mixed up names or dates. Cheryl recognizes that she does mix things up but she does not have the stress of keeping the story straight. That is stressful to her, saying the right thing; giving the right answer; not offending anyone. She learned those from her mother and they are deeply ingrained in her personality. When talking to Nancy she relaxes. (Thanks, Nancy.)
Cheryl’s cousin’s wife Cindy began coming over to sit with Cheryl or take her to one of her exercise classes once a week for a couple hours. I am free to do whatever. (Thanks, Cindy.) These days in the warm summer Ohio air, I often go ride my bike somewhere. Cindy surprised me last Fall by asking me what I did for exercise after a discussion about Cheryl’s exercise classes. One of Cheryl’s instructors was a friend of Cindy’s. Cindy spontaneously offered to come and be with Cheryl while I did something else other than care give. It took me several weeks to figure out what to do with my new found freedom and now I look forward to it.
My son David and his wife Melissa have a wonderful patio and a big green backyard. Many times with little warning I have asked to come visit for a bit with Cheryl. Cheryl likes to visit her children and see how they are doing. Sitting on their patio in the sun brightens her mood. It gets us out of our little condo and does not require a lot of preparation by me. It is a sort of little day trip for her and I can chat with my son who is a fellow engineer. (smiley face)
They have always responded with yes. (One time they were out of town on a spontaneous getaway weekend.) Thanks, David and Melissa.
My son Scott sits with his mom while I go to my stock-club meeting once a month. (Thanks, Scott.) In 1984 several of us engineers decided to make ourselves rich by speculating in the stock market. We started meeting in March of that year. The markets have soared and ebbed. We languished through “black Friday”. We bought gold mining companies. We sold gold mining companies. We drank a lot of beer discussing and criticizing corporate management. We have won big (ABBV) and lost big (F). Good friends and lots of beer with dinner in the back room of the bar makes for a fun evening. (Thanks again, Scott.)
I have also parked Cheryl at Scott and Mavis’s house near us so that I could ride my new ebike around our old neighborhood. Cheryl could see Zachary – the newest grandchild – run around while I was riding. (Thanks, Zachary.)
My daughter Anna visit’s with her mom and in the summertime when her high school is on break takes her mom to exercise class. Last summer Anna stayed with her mom for a week while I went to visit my sister on the west coast and we attended my nephew’s wedding. Jeff and Stephanie have a new baby girl. (Thanks, Anna.)
Our next door neighbor, Jane, comes on Mondays typically to sit with Cheryl for a bit while I go ride my bike around somewhere. Cheryl sometimes walks across the hallway to visit with Jane. She is a good friend and close. Often Jane goes with us on “anything goes pizza Tuesday”. She reacts to Cheryl’s discussion much like Nancy does. Over the years Jane has had issues with her health and Cheryl’s first thought is to see how Jane is doing. Jane has pointed out things to me that she notices about Cheryl and has suggested solutions for those without any judgement. (Thanks, Jane.)
My cousin’s widow, Linda sits with Cheryl while I go do something else. Most recently I signed myself up for a caregiver’s class to find out about other services that were available. Linda came over fairly early in the morning so that I could attend this class. I found the class itself very useful. It was primarily oriented towards care partner health and well-being. (Thanks, Linda.)
I appreciate everyone’s help whether it is a small thing or a big thing. Sometimes it is a phone call. Sometimes it is merely joining us for dinner after church. Sometimes it is taking the roll of care partner for a couple hours. Sometimes it is staying with mom while dad goes somewhere for an hour or a week. I love you all. Thanks so much for helping.
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.
I am currently attending a class for care partners. It is put on for us folks dealing Parkinson’s disease interlaced with dementia and Alzheimer’s disease in our care givee. We have spent a lot of time on taking care of ourselves and making sure we are healthy mentally and emotionally as well as physically. It it easy lose track of those things when you become very involved in the day to day care of another.
Time away from care giving is very important but is it okay to change the social situation a bit and let people in that are in a similar place in their lives?
The idea of a support group meeting allows this to happen but there is a different social dynamic in a casual lunch, friends collected in a bar to solve world problems or gathered for card games with casual conversation. Support groups tend to try being informational rather than random conversation. Support groups that are attended by both the chronically ill patient and their care partner tend to be awkward somehow. If the care partner should feel the need to vent and whine a bit, they will feel embarrassed to do that.
Is it okay to change the social situation a bit and help the Parkinson person participate with you and others.
Admittedly it is a different dynamic. The caregiver has the social burden of not correcting their partner in conversation. Dementia does that to conversation. I want to jump in and save her from embarrassment. What if no one did that? To an outsider it might sound like a game of post office gone bad. So what?
If Frances was elected president then pumpkins would cheaper at the store. That’s true. That’s true and the police are trying to find new shoes for their cars. Those lights on top can fall off and the car hurts from that. Is there any ketchup for the ice cream? Did she bring extra napkins. I see a bug. Where is Scott? Is he coming? I have noticed that more and more people are married to our children. How many kids do you have? I have about fifty. Did you put up the sick people’s sign on the car? I need to make a list so that everyone knows what they are bringing to Thanksgiving dinner next week. I need to call Sr. Janet and remind her that the kids did not give us any raffle tickets.
And on and on. I used to jump in and help her with correct thinking or at least keep her from making embarrassing phone calls. The range of mismatched topics is endless and for some reason our kids turn up in it a lot as children. I also realized at some point I felt embarrassed. Cheryl did not. I stopped thinking seriously about it.
I actually think of this often. When Cheryl is out with her long term friends, people that she has known for many years but has not seen much over the past few, she puts on her “showtime” mantle and converses. When she returns home she is often exhausted from keeping that going. What if the social occasion did not require any sensate being to understand the conversation? What if there was no sense of or in it? Would she be less exhausted?
Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.
The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.
Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.
Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!
Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.
The Wordle today was easy. I got it on the first guess. Today life is good.
Yesterday we picked up one sister of Cheryl’s and went to visit another sister of Cheryl who lives about forty miles down the road. It was a very pleasant visit sitting on their great front porch perched up a hillside with a nice view of the Ohio river to the north. We had a great conversation while some extra kids and grandkids showed up to drive go-karts and minny bikes over the hills and around the property. Sometimes it seemed like having a conversation on the berm of a nearby highway. Nevertheless it was a good day and this morning Cheryl is sleeping in for a bit.
Which leaves me with my morning coffee and watching the morning news shows. It also leads me to think about what is news to me. The morning news shows, as they always seem, are interspersed with the latest political dilemma, complicated financial maneuvering that makes money less valuable but no less important, some actor/celebrity fall-out from marriage or their manager, the best guacamole recipe or another use for hot dogs, the expected weather for the next week (it is remarkable how this is always bad news), the latest book usually a tell-all memoir – today about growing up as a child of abusive news reporters in California, and other useless, to me, drivel. I suppose a breakthrough therapy for Parkinson would be of much more interest. Sometimes news is merely superfluous information and blather.
I turned it off because I noticed I was using it as background noise for working today’s Wordle and a couple other puzzles I have become fond of working.
I like crosswords. I suppose that is my father in me. He liked crosswords also. It probably sounds odd that I care little for Scrabble since it looks much like a crossword when completed. I think that has mostly to do with competition which I also care little for. I am not competitive except with myself. Crosswords and stroke-play golf fit into those self competition categories and maybe bowling.
Journaling and writing and blogging is also an interest. Today is also wash-the-sheets day and I am starting later because she is sleeping in.
She becomes anxious about not knowing where she is or who I am. Two days ago that happened as I was listening to the 9/11 broadcast on network television. In New York they had a solemn reading of all 3000+ names by various relatives and occasional commentary like – I never knew you Dad but I miss you. Incredibly sad and moving.
Cheryl became anxious and her world collapsed for a few minutes. Perhaps I should have turned the program off or at least turned down the sadness and remembrance of that day.
On the following day we participated in the Sunflower Walk Run to raise money for Parkinson’s Research. It was a wonderful day with the kids and family. Cheryl at the end of the day said, “Thank you for the nice day.” It was a nice day. But slowly, as often happens as the day wears on, she became confused about things. She was worried that she could not figure out how to get a list of participants so that she could invoice them for their donations. (her words) I gently pointed out that the U.C. Foundation had already taken care of that and it was not necessary for her to concern herself with collecting money.
And just now she asked if I noticed that someone is placing Jack-o-Lanterns in the bushes and woods behind our house. The sun is lower in the sky and as its light filters through the leaves it projects patterns much like a Jack-o-Lantern on the forest floor below. It is fascinating to look at the woods out back with another’s eyes. She shows me new things each day.
At the left is a view of the woods. At the right is a zoomed in view of the light patterns through the screen on the back patio. The one on the bottom right, even I can see how she interprets as a Jack-o-Lantern.
Sometimes Carpe Diem means to stand in her shoes and see through her eyes.
Adjunct_Wizard 