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.
Cheryl sees many shapes and things and people that I cannot. I wish I could see through her eyes just once in awhile. I might have a greater understanding and appreciation of what she is going through.
Yesterday as I left sitting at the table with another gentleman waiting for dinner, I suddenly realized that in many ways she is gone. It saddened me deeply and I cried a bit. She is staying at a memory care facility while I go to visit my sister across the country.
I am hoping for a great visit. We have not been together for two years.
Sleeping last night was very hard as I expected it to be. I thought about Cheryl and hoped she would not be too disoriented or afraid. She is more of both lately. Several times over the last couple of months she made reference to being gone. The first time I sat with her and listened. She was convinced she would not be available to have her hair cut in August. She is still here physically but her words are a mystery often. It is frustrating to her that she cannot find the names of her family and friends. It is frustrating to me that I cannot guess the correct words and help.
I hope she knows who I am when I get back. I wonder who will I be when I get back. But if not I will need to figure out a greater amount of care for her. A meditation for another day.
I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.
I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.
I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.
Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.
As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.
Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.
Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.
If I change my expectation for her walking, perhaps I can help her improve.
If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.
In my former life as a teacher of control topics I had the students set up an electronic timer to reach its goal at 10 seconds and 30 seconds to teach the point when you are waiting 10 seconds to is a long time and 30 seconds is “forever “.
From my view in the back seat the miles to go display is not fast enough. What is it about progress displays that make us wish them to go faster? The electronic timer had no display. It also taught patience.
61 miles now. Urgency is calling me. We are close to home and I can feel stability and familiarity drawing me in. It was a great beach trip.
Black hatUs beaching Early morning beach Setup Patience almost done
When the children were small we began a tradition of making a trip to Myrtle Beach about once each year. The company that I worked for at the time used a pair of common vacation weeks which always landed at the end of July and the first week of August.
The company paid us salaried folks every four weeks called a period. The vacation weeks were the middle two weeks of the eighth period of the year. There were thirteen periods in a year and every few years a week was added to the thirteenth period to correct alignment with a normal calendar year. The Roman’s and later on the Pope would have been proud of Cincinnati Milacron.
Every year for 15 years or so our family went on vacation in the hottest part of the Ohio summer. Since my father worked for Milacron the memories of this vacation time goes back to childhood.
Cheryl liked to hike and walk. Not being an especially athletic person she substituted hiking and walking for any other athletic endeavor. At Myrtle Beach we would get up early hike the empty beach. It is where I first saw the green flash that occurs when the sun comes up over the ocean.
On other vacations over the years hiking was a big motivator. In every state park or national park or area that we stopped in walking and hiking was a major part of the experience. Maps were collected upon arrival and put to good use during the stay. In one Kentucky park our hike was about ten miles. It is without a doubt the thing I miss most with the onslaught of Parkinson. Her struggle to walk freely and move easily is disheartening. It was in many ways our main entertainment.
Conversation, discussion, debate, points won, points lost were all accompanied by a satisfyingly long walk. I think I miss those more than I can easily express.
Today my daughter and her husband took a long walk down the beach together. I was envious.
The hat
This time at the beach I am pushing her here and there. There are special wheelchairs for the beach and they are free. There is good ice cream across the road. I pushed her there too.
Cheryl awakens in a different place each day. She thinks that multiple people bring her morning meds to her. She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.
It takes a bit of time and a bit of routine for her to get a grip on reality. I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.
It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.
This is not my writing but Edie captured my thoughts with this post on Facebook. She and her husband are in about the same place as Cheryl and I with Parkinson’s Disease.
“Accepting what is… Choices and Avoiding The Sting of Defeat…”
There isn’t a day that I don’t Experience either a “slap myself on the forehead” moment, err on the side of caution, spout off an opinion or best of all, make my fella laugh or smile.
Some days are just rough. They’re tough!
Others? Well…there are good times; a smile across the room, a look of total understanding and the knowledge of who we are currently (and who we once were together. We’re still one.
This is a tough week for me personally. Our 45th anniversary is Saturday, Oct.24th. Tommy has been clear headed lately with some delusions.
A while back he mentioned several times that he wanted things to be “like they used to be” with our family. Life evolves and nothing remains the same.
As we all know life is not static. We’re a close family, but the grands have grown up, moved away and their parents are busy too. We used to have UFC Fight Nights, BIG holiday gatherings etc., and even no reason to get together functions. We gathered often and now? Not as much. Parkinson’s causes loneliness.
PD has changed all of us in various ways. We’re each caught in the midst of love, losses and our own feelings and responsibilities in life aside from Parkinson’s and Dementia. It’s inevitable. It happens.
We’re all worse for the wear because it’s a ruthless disease. But making, (hopefully the right) choices, accepting the realities of PD and Dementia, and preparing proactively for change has helped me to avoid the sting I mentioned at the beginning of this post.
Our CNAs have given me the “breathers” that I have long needed to separate myself from too much of anything that could bog me down when I’ve been up to my ears In either a struggle with Tommy, a medical issue, the VA or my own emotions. As caregivers we have lists of to do’s a mile long that threaten to swamp us.
While I’ve been planning our family gathering for our immediate family members, I’ve pulled out photos of us throughout the years, and of course…I cried.
I cried because I love Tommy passionately. I miss him, but I accept him as he is too. I do love him even more today than yesterday. Some days we get on each other’s last nerve too!!!
I cried because as much as I have tried to keep PD and Dementia out of our lives, it has, like a bee being threatened, taken a bite out of us and stings like crazy!
When I finally came to terms with accepting the transition from normal to cognitive issues and delusions, I had another epiphany. I came across a photo of one of the Santorini stones I paint. Painted in the body of the bee are the words, “Let It Bee.” Lord knows, I’m trying!
Moving forward. My menu for Saturday consist of Tommy’s favorites and the carrot cake is my favorite. The wine, Moscato-Asti is our favorite.
I pre ordered (from local businesses) everything so I wouldn’t have to prep or cook. I’ll decorate the cake with a topper that says “We Still Do” and edible FALL leaves. I’m excited and a little off kilter too.
Having the family near will be centering for us both.
The menu is planned and is “enough”. It will be truly complete when our group comes together with gratitude around the Kynard House table.
I wish you all could join us! I’ll post pics later.
Edie and Tommy
We too celebrated a milestone anniversary this year. We have been married 50 years. Sometimes I am disappointed that our retirement activity is centered around Parkinson’s Disease and other days I have come to understand that it may be the reason for being.
Our children organized a wonderful celebration. For that I am very thankful.
50 year cake
Anna also put together this collection of snippets of various sources.
We were young and skinny then.
… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.
Adjunct_Wizard 