Chronic illness and sleep
As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.
Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.
Caregiver and sleep
The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?
Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.
It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.
Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.
Mindfulness and resting conscience
It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.
When I was a kid I attended a Roman Catholic school. There was a book called the Baltimore Catechism that we all spent time with. In it or may be with it us kids learned how to pray. This is from Wikipedia — Prayer is an invocation or act that seeks to activate a rapport with an object of worship through deliberate communication. In the narrow sense, the term refers to an act of supplication or intercession directed towards a deity (a god), or a deified ancestor. More generally, prayer can also have the purpose of thanksgiving or praise, and in comparative religion is closely associated with more abstract forms of meditation and with charms or spells. On social media and SMS messaging people tend to add little icons of hands pointing up — in the sense of “praying for you”.
None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.
When I am able to do this the day looks fine.
Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.
We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.
I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.
The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.
It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.
You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in meYou’ve got a friend in me
You’ve got a friend in me
You got troubles, and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in meSome other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boyAnd as the years go by
– Randy Newman, Toy Story
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me
She will always be my friend. I just want to be hers and give her a smooth path.
This is my prayer and lament.
Adjunct_Wizard 