There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.
Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.
Enjoy the rest of it.
Whatever it may be.
Help where you can. Sometimes she will refuse the help. Help anyway.
It is important to try making it into a nice day. A few weeks ago another Cheryl wrote on her blog – just let it go – or words to that effect. As we move further down this road of Parkinson I find ways to simply make life more enjoyable.
Cheryl likes egg bread. It is a memory from her childhood. My mother always called it french toast. I do not know what the French call it which sent me on a quest for knowledge from the internet of all knowledge. They call it pain perdu and that translates into lost bread. French toast (pain perdu) is always better if it is made with stale bread. It is better in my opinion if it is made from stale sourdough bread.
This morning I coaxed her awake with the thought of french toast with blue berries and a little whipped cream. This is a picture of mine. She was already eating hers when I decided to take this picture. She had slept late today but it is a good day.
“It was a good breakfast, dear”, she said to me as I was loading my plate into the dishwasher. We have no real plans for today. Perhaps I will take her for ice cream later in the afternoon. Perhaps not. We will just go with the flow today.
In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.
Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.
The donuts were only hours old. Ron makes them overnight.
Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.
I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.
I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.
After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.
After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.
Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.
I Have Learned
Kindness returns after 2 mugs of black coffee
Cheeriness requires more coffee
Grumpy can last all day if you allow it to.
Maybe listen to the explanation while getting more coffee
Get her to take 7am meds and get breakfast
If she wants to make Christmas cookies, let her.
Her conversations will wander all over the place when she has slept poorly.
Cheryl has some dementia which is a nuisance with her decision making process. Any attempt at speeding her up doesn’t seem to work well. She merely gets angry and frustrated with her husband. And it is hard for her husband to not speed her up. That must be fifty-two years of helping getting in the way of care partnership. (Smiley Face)
This morning I tried to move her along without being pushy. Yes, I can be and have been pushy.
She wakened several times overnight to go to the toilet. I got up to help her once. So, when the seven am medication alarm went off, she ignored it. I got up to remove that annoyance from my ears and get her first dose of stuff for the day. When I returned her snoring indicated disinterest in arising for the day.
I laid back down to see if she would stir again. When I awakened it was eight am. I must have been tired also.
Eventually I left the bedroom to make coffee, get the papers and turn on the news to discover which part of California is on fire. An hour or so later I kissed her awake and she asked me when church started. I told her that she had exercise class at noon. I left to drink more coffee and to listen to the interesting fact that no toilets could be flushed in Mississippi. I returned for another gentle nudge and she got up.
I suggested scrambled eggs and toast for breakfast and she readily agreed. I continued with gentle nudges and quit concerning myself with whether she would be late for her class. She was not late.
The exercise classes she takes at Parkinson Community Fitness are a benefit to her so I make every attempt to get there on time but today I tried a not pushy technique. I call today’s strategy “bump and run.” I would engage her and nudge her thoughts and then leave. I came back a few minutes later for another bump and run. It worked and neither of us was upset when we left.
Today’s class was led by Paige and Jenna. Jenna’s notes are here. The rowing person is excited to do the exercise.
I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary
It was made by my friend Edie down south
God spoke to her, we never talk by mouth
She has this exquisite talent she is sharing
she posted this on the day of our pairing
Edie, you did not know
that fifty two years ago
Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.
This appeared from James Clear in his email newsletter.
It spoke to me. Deeply.
I do feel small when I allow Cheryl’s disease to become her. It boils over into anger and guilt. I forget often that she is not her disease.
She has been getting physical therapy to help her with movements like getting out of a chair. Sit to Stand is the notation on the PT’s notes. This motion is natural to non-PD people. One does not even think about the mechanics of it. Cheryl has to think and remember the sequence of moves. Depending on the time of day and how she is feeling, thinking and memory are difficult. So she simply cannot remember how to get out of a chair.
When she has fallen and when she falls it is always backwards. I encourage her to lean forward at her waist and push off the chair as the PT told her. Nose over toes is the mantra. But in view of anything, walker, table, person, nearby grab bar or whatever grip, grab and pull easily win over N-O-T. I encourage by telling her where to put her hands and how to position her body. She responds with don’t-tell-me-what-to-do anger. I respond in kind and then feel bad because I was to her unkind.
I love her dearly (big). I am annoyed with her disease (small) and I allow it to be her (smaller).
My personal reason for writing this is to hold that idea up in the light and discern how to be better next time. I am grateful for all the next times even though anger anxiety and anxiousness might creep back in. It is hard work and I am not that good at it.
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.
An empathetic and caring atmosphere for your partner with Parkinson and dementia, like a good marriage, must be created. In the art of marriage the little things are the big things. The same is true for care partnering. Small things are meaningful to both.
It is never being too old to hold hands. Physical touch is a comfort. Holding hands and helping someone you love up a step or into the car or into a chair at the restaurant is a sign of love. Doing those things without complaint and without request is a sign of grace. Look for grace in your life.
Remembering to say, “I love you” at least once each day to a spouse who is also graced with a chronic disease is reassuring. She did not ask for this disease. Reassure her that she is not an annoyance to you by saying this often. As a care partner there will be times when you do not feel that way in that moment, breathe deep and remember how it was and use those thoughts to see her as she is now.
Never go to sleep angry. Anger is available every day. It has no place in the bedroom at night. (This may be the hardest lesson to learn.) Just remember that everything seems worse at night. Sleep later into the morning hours. There is always light after the darkness.
Discussing and having a mutual sense of values and common objectives that are important to the partner who is burdened with Parkinson is essential for helping her to manage the disease. Occasionally anxiety creeps into my thoughts and voice. When that happens I become a naggy care pusher and not a helpful encouraging care partner. If you can, resist becoming a naggy care pusher.
We are standing together facing the world. This is a joint effort. (A platitude – many hands make for light work.) Care partnering is forming a circle of love that gathers in the whole family. It gathers in your circle of friends. It affects the person with Parkinson directly both physically and sometimes mentally. Parkinson is a change. Parkinson is not a purgatory.
Care partnering is speaking words of appreciation and demonstrating gratitude in thoughtful ways. These words are exchanged in both directions. These words are not expected. These words are freely given.
Care-giving has the capacity to forgive and forget. Give each other an atmosphere in which each can grow. Share your thoughts and ideas with each other.
Find room for the things of the spirit. And when the spirit moves, search for the good and the beautiful. Keep on the lookout for those “Aha” moments to learn from.
As it is with marriage, care-giving is not only partnering with the right helpmate. It is being the right partner. Parkinson’s sucks is the phrase Michael J. Fox uses. By helping each other PD sucks less.