[Depressingly simplistic] Nobody does anything for morality. It’s only money…. Walter Mosley
[Depressingly simplistic] Nobody does anything for morality. It’s only money…. Walter Mosley
Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.
Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.
I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.
Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.
Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.
These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.
Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.
I read my book for awhile longer and we went to bed at 11:15 or so.
Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.
Another day passed.
The trips to restaurants continue.
On Wednesday March first which is the first day of Spring in my mind and always will be, we went to Ruth’s Parkside Cafe.
At 2PM in the afternoon there is little activity. There were a couple other gray hairs there enjoying the nice weather. The weather has been pretty mild this winter. There is a line in the “Bob hearts Abishola” show on CBS where Bob blames global warming on Al Gore because before him we were just enjoying the really mild winters in Detroit. It makes me laugh but I kind of agree.
The daffodils in the back are in full bloom. They are early this year.
Cheryl had a BLT bagel. I had a red bean burrito. The Cafe has an eclectic menu. For dessert the waitress was apologetic because they were out of pie so I selected gooey butter cake and two forks. I have linked a recipe that I found for this delightful dessert. It was the highlight of our day. Cheryl talked about the cake all the way home.
Carpe the restaurant Diem.
Sometimes pride about the achievements of grandchildren can overwhelm. Yesterday Anna sent a copy of the letter Audrey got from the Air Force inviting her to USAF Academy summer seminar session A. Anna’s daughter is interested in the Air Force, flying and going to school in CO.
THAT IS SO COOL!
… the universe is unfolding as it should…
We are so proud of her and her achievements. Cheryl and I wish her well.
Every once in awhile I get the what-if-I-did-this-instead-of-that in life blues (mood, meditation, discernment). They have been strong for the past couple weeks.
I suppose this winter has gotten me down more than previous. Cheryl seems more and more mentally frail as the PD/dementia progresses. I think that bothers me more than I want to admit to myself.
She has not seen the woman who lives in the corner of our bedroom for several weeks. Cheryl thinks her name is Jean but she is not sure of that.
The what-ifs instill a background anger. It is a sort of smoldering why-isn’t-there-a-fix mood. Perhaps it is time for me to find a shrink.
Therapy for me is to find a novel that captures and keeps my interest. I have never been one to stick with it if the story has wandered off into the weeds. Recently I read “A Man Called Ove” by Fredrik Bachman. It spoke to my heart and kept my interest. Ove was pretty down after his wife passed away but many of his neighbors kept inadvertently messing with his suicide plans and the story goes on from there.
Typically I read for an hour or two before going to bed in the evening. If Cheryl is awake when I come to bed I notice that she does not sleep well through the night. I let her sleep later and then feel guilty all day while I am getting her back onto her med schedule. And it creates anxious stress in me as I keep track of her medications more closely until she is caught up.
The medications only seem to work sorta.
Parkinson does seem to be endless and that starts to get me thinking about the What-Ifs again. There are no take-backs in this life but wow does PD suck.
I am hoping that she will get her earrings in in time for us to go for a walk in the sunshine today. I would help but that merely causes a spat. So far it is not looking good.
Carpe Diem. (And then she appears.)
Sometimes I can convince her that we have come home and we have not left the house.
On other days and nights that is impossible. No night is the same. On this night we had to go home.
I gently got her in the car. I was proud of the fact that I did not get upset. As we drove around the block about 2 mile per hour below the speed limit – the ride is longer that way – I kept up some chatter about various things. Some stories about upcoming events on our calendar.
As we drove in front of our regular Pizza Tuesday spot, she told me about being there last Friday with Paul.
As I turned the corner to climb the hill, I asked her if she knew the way from here. I got no response. As we got to the top of the hill and she began to recognize some land marks she said, “I live on the other side of all that.” (She was headed home in her mind.)
As we got close to our driveway entrance I said, “It’s good to be home. Isn’t it?” she responded, “Yes, it is. I’m tired.”
Dementia, Capgras and Parkinson were in full cooperation this night.
I fear that this little drive around the block reset ploy will not always work. That makes me anxious.
Maybe God will provide me with another plan.
So… I have had this ear worm for a couple of days now… The hymn was sung in church last Sunday.
© OCP 1978,1979.
We are called, we are chosen.
We are Christ for one another.
We are promised to tomorrow,
while we are for him today.
We are sign, we are wonder.
We are sower, we are seed.
We are harvest, we are hunger.
We are question, we are creed.
there’s more …
Whenever this happens I will take the time to analyze why a song or hymn has had this effect on my head.
In this case I have meditated upon my role in Cheryl’s care for some time. Every care partner does or they walk away. I have chosen to stay by her side through all that comes.
… we are called to be Christ for one another … and to walk humbly with God. (a different hymn)
To search for the meaning of our life is in all of us. Being an active care partner is a humbling experience. It is also a grief stricken experience. On many days it sucks.
I’m still thinking about all of it.
This novel by Joy Fielding is a fictional story with Parkinson’s disease as part of the story line. I tripped over this novel in the library the other day and brought it home. It was not until I began reading it that I picked up the Parkinson’s piece of the story line.
It is also a discussion of alternative truths, lies and deceit.
It is about thoroughly checking references when hiring help in your home.
Dysfunctional families always make a good story. Most times they are the story. There is plenty of that in this novel.
Pleasing our parents is something that we always try to do. Even when the parent is gone many of us still try. Even if the parent is old and cantankerous.
Bad parenting, good parenting, mutual respect and aid is all part of the complicated state of marriage.
Kids being kids add comic relief.
Writer’s ego and husband philanderers creep in and out of the story line.
With an amusing and unexpected plot twist near the end, it changed how I thought about the characters.
And a satisfying hallmark style ending always makes for a good completion chapter.
Read books. The day goes faster. Especially days that only have decaf.
Last evening most of Cheryl’s sisters and all of her brothers came to our house for a sibs dinner. Ostensibly a celebration of the youngest’s birthday. Ken goes to Florida on his birthday week. He looked tan. I made spaghetti and meatballs. Cheryl likes that. I made paine ordinaire (simple bread) because I like that. Tari brought salad. We had three desserts. We sang happy birthday.
Later I found Cheryl in the back closet wondering where she was. She seemed in wonder that all her clothes had somehow been moved to the back closet by our bedroom. She selected her blue zip-up jacket because she was cold. I was hot. Birthday boy was wearing shorts. The thermometer read 74.
She was very excited last night. She slept poorly overnight. So did I so today I am reading.
It is February in Ohio.
She was weepy as she toileted this morning. I asked her what she was thinking about. Could she tell me why she was so sad?
She had been worried that she would not wake up. I did not know what to say to her. I think the tears were relief that she had another day. (I have not dreamt of my own death.)
The tears were still coming during breakfast. Her sense of impending demise was strong. I hugged her for a bit while getting her juice and coffee cake. She seemed to relax and she focused on the newspaper. I went to watch the TV news and work the Quordle.
Later as she was getting dressed, she thanked me for taking care of her last night. I had to turn away and focus on my chores for Friday. I told she was welcome before I started to tear up.
Somewhere in the recesses of her cognitive brain she is pondering the future. It seems as though she does not see very far into the future. She has a much better vision of the past and sometimes the past is current to her.
And it rises to the surface upon occasion.
I think that the hardest part of this damnable disease is the rollercoaster of feelings, emotions and moods. I have written this before but it seems like one minute after a sane normal conversation exchange the train will go off the rails.
Today is developing into one of those. It is hard to keep the caravan moving in the same direction.
Moments ago when I asked if she wanted her bedtime pills, she responded , what for? It’s daytime.
I hate Mondays. Mom told me this late in her life. I asked her why? I pointed out that she had not worked for decades. I don’t like Monday was her response.
Parkies can be grumpy on Monday too. Cheryl is not typically. I guess I am a bit because I did not sleep as well as I wanted. My bladder got me up at 4am and itchy legs kept me up for awhile.
I finished the wordle and went back to bed about 5am. The sun was up when I awoke again at 8. Cheryl was awake also so I made coffee and went retrieve the garbage can and the newspapers.
Except for the fact that I am retired and Cheryl has Parkinson’s disease and does not move well. A regular day. Ho Hum
Carpe Monday Diem