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.
This time of year many make resolutions for the new year. Me too, of course. My resolution to myself is to be a better me. And I have no idea what that means. Yet, the idea that I want to be a better me implies I know myself now and there are improvements that can be made for the better.
Do we ever really know ourselves? How old does one have to be before acceptance as is becomes the norm?
This past year as I passed through three quarters of a century and Cheryl did not, I began to emerge from a deep funk, a depression, the sadness of her death, the gladness of her death, half a decade of overwhelming anxiety about her care and looked toward an open road and at the new sunrise and wondered, what next?
A new person entered my life who knows me only as me, a man, single, a writer that exposes his emotions to the world, who tries to be of service to others around him, and maybe shares too much of himself. She does not seem to mind my nuances of self. Like everyone I have many of those nuances, sides, aspects. We seem to fit.
Another resolution, perhaps a better one is; stay in the moment. Being a better me is a look into the past and attempting to improve. Staying in the moment is not looking back. Nor is it planning for some future that may not come. For now fitting is enough.
These are thoughts that come to me as I think about a new relationship.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. (Max Ehrmann)
This morning I restarted my morning chair yoga exercise routine. This morning I restarted morning meditation. Two things I notice: I have a pleasant gentle ache in various muscles from the stretching exercise, I did not hear the tinnitus in my ears while focused on breathing. These came to me as I sat across the room to revisit that short experience and my sense of time passing so slowly dissipated while I did these activities. My timer seemed to announce completion after a mere ten milliseconds instead of minutes from when I started it.
Time compressed. Where am I going? What am I hunting for?
Good health and peace in my soul is my spontaneous answer to the second question. Does going mean physically moving and travel to somewhere? Or is it internal? Some of each? Neither?
When Cheryl was still alive and with me here at home, I began to worry that my own health and well being suffered because I was totally focused on her health, what she ate, how much she ate, her mobility, her balance, her attention, her memories, her perception, her moods, her bowel urges. I rejected concern for myself.
Much of that concern then is useful for me now. Now I am focused on my health, what I eat, how much I eat, my mobility, my balance, my attention, my memories, my perception, my moods, my bowel urges. I think older folks focus too much on bowel urges. At the same time it seems important to note what foods that used to be favorites no longer seem to be tolerated as well as they once were.
When Cheryl was still here I began and kept up for many months an early morning routine of chair yoga. I bought a book. (I am always hunting for the manual.) I found the book back this morning after I finished my ten minute scheme to start. The exercises are simple and directions have illustrations. (YouTube has plenty of these but as soon as one gets into the zen, the calm, the mood, some extra-volume political message appears and phffst, just like that zen is destroyed. For an unreasonable sum, YouTube is ad free.)
Facebook shows me advertisements for an app with some 90-something guy with great abs doing chair exercises too. Those are amusing and laughable and less obnoxious and quieter. Welcome to the world of zen and social media.
I am not hunting for perfect abs. I remain uninterested in protein shakes.
I am interested in losing a little weight because my pants would be a bit looser. Most of that weight is hiding out on the front of me. I see it every day in the mirror.
I like meat. Meat has protein and tastes much better than a protein shake. Peanuts, nuts, eggs, oats, seeds and wheat have protein and all of those taste better than a protein shake. If it isn’t broccoli or celery, there is some protein in it. Broccoli has better taste than a protein shake.
Where am I going? That remains to be seen and felt. I strive to find a deeper meaning within myself.
For most of the spring and summer months I found something in pedaling my bike along the bike paths around town. I found an inner peace. I learned to focus over time on the piece of the trail immediately in front of me. I looked far ahead only to anticipate obstacles and plan maneuvers around them.
I returned to our church. Cheryl was much better at religion than I am. I am more questioning. I returned to church not for the religiosity. I returned for the community. I sit in a different place. (Everyone seems to have their place in a church.) Cheryl had a place that she liked to sit and of course I sat with her. I sit in a different place now. Just me.
I am going toward the next thing. That thing is right in front of me. It is not way out in the distance.
“Winter is coming”, says the head knight staffing the wall in Game of Thrones. It is indeed. Prepare for it. Dress for it. Do not be anxious. Anxiety serves no purpose.
Just wear this neck brace for a while and after 8 weeks or so all will be well. Hopefully after 8 weeks or so my face won’t look like it does now. Ill be back to my clean shaven, handsome self. Not looking like I went through the windshield of a car. Anyway It’s not too bad.
I still feel kind of dumb, but Oh well. Stuff happens.
The whole of the Parkinson experience is measured in tiny little steps. Whether it progresses or regresses the steps are tiny.
This morning for the first time in several mornings Cheryl awakened with an alertness that I have not seen for weeks. I helped her from the bed to the toilet and then she walked herself into the kitchen for breakfast. The previous few days I had rolled he into the kitchen in the transfer chair I purchased for watching grandchildren’s graduations. It was marvelous. She did not move rapidly but she was moving by her own power.
Is that progress or regress?
Which side of the fence are you on?
Progress?
Today, this morning, her disease regressed a bit and she got up after a long night of sleep refreshed and able to move herself around.
The water is calm. The air is clear. It is a new day. Pizza Tuesday is here.
Every morning I spend a few minutes finding my center. Many call it prayer and I suppose it may be that for some but for me I think of it as centering.
Each day brings new experiences unlike the previous or the next. Starting in the center allows for movement in either or neither direction. One can go with the flow as the kids say.
This trip to the beach with family is centering me more than I originally thought that it could. Before we left I worried over small details and ultimately let go of some. Of course now that we are here I see a few details that should have occurred to me but did not.
Had I centered on Cheryl and her needs, I might have thought about some handy things that I have used to help her. I should have brought with us a couple more handicapped useful devices. I bought her transfer chair not realizing that her U-Step walker is just as important to her mobility. She needs her manicure kit to keep track of her finger and toenails daily. A handicapped toilet seat would have been a wonderful thing. (At home we have had seat height toilets installed. The toilet seat height is within an inch of the height of the transfer chair seat which is becoming more of the care partnering experience. )
But centering on her disease shifts the mood of the vacation holiday. It is a delicate balance between understanding and helping.
Centering myself at the beginning of each day provides a perspective and I deal things as they come up, not as how I want them to be or wished them to be.
In my little book – The Hitchhiker’s Guide to Parkinson – I have a section where I note things that I have learned along the way as Cheryl and travel this road of Sam Parkinson.
Today it occurs to me that although I want Cheryl to get up and get going to exercise class because it appears to me that she actually likes this exercise class and although she got up late she still has time, suggestion is the only tool I have to motivate her. Any comments beyond – if you still want to go to exercise class you still have time – reminds her that it was her idea and answers her unspoken question of, is there still time? – are useless comments and could make her feel that I am being pushy.
If she senses that I am being pushy she will resist it every time.
Another technique that I use but often forget about is what I call bump and run. I can use the fact of her really poor short term memory to plant an idea.
This morning it occurred to me in addition to using suggestion as a way to get her thinking about getting up, if she did not I should just let go and not worry about it. I understand why it is good for parkies to exercise but she is not always interested. If she perceives it as her idea, she is in, if not, forget about it.
We made it
I realized that I can switch from encouragement to nag-o-ment if I do not pay attention.
The drug for nausea – Ondansetron – seems to work very well. I have adjusted when Cheryl takes it a bit. The instructions merely say three times a day and at first I interpreted that to mean 7AM, 1PM and 7PM which are normal times for her to take meds. For the past couple days I have given her the evening pill at about 5PM which is 45 minutes to an hour before we would ordinarily eat dinner. It seems to be working for her. I have repeatedly asked her about stomach issues and she reports no issues with her stomach.
This report – no funny stomach – is very encouraging since it has been her main complaint for months. I can empathize. Over the past couple years she has lost approximately thirty-five pounds of weight. The dyskinesia puts her body in constant exercise but the combination of no sense of smell and a slightly uncomfortable stomach keeps her from eating much. (During this whole time she has not vomited but as she says, it is right there.)
Quetiapine Fumarate – 25mg
The drug used as a sleep aid – Quetiapine – might or might not be working as hoped. She is prescribed 1/4 of this little pill before bedtime (10PM). Shown above it is approximately 1/8 inch in diameter. We have a pill spliter but these are not scored for cutting in half as many pills are and certainly not scored for quarters.
The first night she took this she slept completely through the night. This was the first time in approximately two years. The second night she got up once. The third night she got up once and seemed restless for a bit when returning to bed. The fourth night was similar to nights before she started taking it. I am not convinced that she is getting the same dose each evening, so I will find a way to slit these tiny little pills as uniform as possible.
An update: Last night seemed better. She used the walking frame for stability. Only once.
Quetiapine was developed in 1985 and approved for medical use in the United States in 1997.[6][9] It is available as a generic medication.[10] In the United States, the wholesale cost is about US$12 per month as of 2017.[11] In the United Kingdom, a month’s supply costs the NHS about £60 as of 2017.[10] In 2017, it was the 76th most commonly prescribed medication in the United States, with more than ten million prescriptions.[12][13]
This website Drugs.com has pictures and characteristics of everything.
