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.
When she tried to eat her fidget beads I reacted not with excitement but love When she poured her water in her lap I came to her aid with love and caring When she talks so soft I cannot hear I ask her to use her outside voice And yell with all her might
She replied I am. I took her fidget beads with me today I realized the meaning of out of sight, out of mind in her case totally I got a towel to dry her pants and sleeve I asked her if I could help her change clothes No, she said. I did not push. And I am learning to read lips.
Today she tried to eat her fidget beads To her these resemble candy. Touch is more important than being right Gentle touch and just being
A small gymnasium with loud music and time to wait, the pre-dance show is boring. I am glad that I have a book. I am writing facetious nonsense.There is no pre-dance show. It is loud music, unnecessarily so, in a small gymnasium.
The girls on all the teams are enthusiastic and passionate about their routines. As a biased grandfather watching these kids perform I think my granddaughter did the best but two concepts interfere with that assessment, familial relationship and ignorance of the judgment criteria. A rubric would be helpful with the latter. There is no help for the former.
I did enjoy the afternoon with my daughter’s family. Earlier in the day Cheryl had been sleeping soundly in her recliner. I sat with her for a time. She did stir when I talked to her. She did not stir when I kissed her cheek. She did not stir when pulled the blanket from beneath her head and covered her with it. She did not stir when I kissed her good-bye and left to have some lunch before the ride to the competition.
Jazz Dance
Cheryl was safe and taken care of. I went to watch the dancers without concerns for her wellbeing. I thought about how she would have liked to have been there. I made a video to show her later.
(A beginning of a new life and the ending of an old one.)
This holiday season marks the beginning of a new phase in our life. “We’re in this love together” popped up on the Spotify playlist as I started to write my thoughts. Cheryl and I are in this love together and forever.
For the past few weeks I have been organizing, sorting and cleaning our living space. I have gotten rid of multiple copies of old emails and address lists. I have meticulously gone through rubber banded stacks of old Christmas cards and retrieved pictures, snapshots and photographs. The work has been tiring and emotionally draining. Old photos bring back fond memories and nostalgic remembrances of good times. And some old photos do not. Those photographs distract me into detective mode. (Who is that person? Why were we there?) Even with those questions hovering in the background of my mind I think, look how young we were once. How did we get here?
This year has been a tumultuous one with both love and mental chaos, physical challenges, extra equipment and extra medical help as Cheryl’s Parkinson and dementia seemed to overwhelm her and me. Her good days became fewer. Now, today, Thursday, December 28th, my sister Laura’s birthday, Cheryl is staying in the Harbor memory care section of Bridgeway Pointe. How we got here is a story about the agonizingly slow progression of Parkinson’s disease and the mental toll it takes on many of its victims. It is also a story of how it slowly came to me that although I thought my love could conquer all, there is strong evidence that extra hands and expertise were needed. It is a story for another day.
This holiday period is very different. About two weeks before the Thanksgiving Day holiday Cheryl moved into the Harbor. A week and a half later as I took her to David’s house for Thanksgiving dinner, she was resistant to getting out of Bridgeway Pointe to go to David’s house. After that experience I told the kids and extended family that any more celebrations we had to take to Cheryl. We should not expect her to go to them. (It is too hard for her and for her husband.) Cheryl had settled into Bridgeway Pointe in a fashion that I had not expected.
The rest of the holiday dinners and celebrations I attended without Cheryl by my side. I visit Cheryl every day. The kids visit on many days. Her brothers and sisters and friends visit when they can. It is different. I do not know what I was expecting or what I want it to be, all that I know is, that it is different. There is something missing for me at the celebrations. I think that something is Cheryl’s spirit, her smile, her glee watching the kids open presents, catching up on family or simply delight in the moment. “Don’t it always seem to go that you don’t know what you got ‘til it’s gone?” – these words are from an old song.
From here at this moment in time we begin anew. I do not know what our new life will bring but it will be better for us.
With dementia, though I know she has it, I want her to be like she was before.
With her dementia, it is hard to separate what I want to do from what she is capable of doing.
With her dementia, I want her to be organized like she was before.
With her dementia, I want her to wake up and be ready for the day.
With her dementia, I want her to go with me and walk in the sunshine and enjoy the day.
With her dementia, I want her to comb her hair as she likes it to be. Men are not good at hair.
Even with her dementia, I want her to be aware of her surroundings.
With dementia I want her to be with me in the present.
Though she has dementia I want her to help plan our future.
But with her dementia and her associated Parkinson mobility issues little of that is possible. I do not know what is possible anymore and that frustrates me.
If that sounds like a lament to you then I have accomplished my goal.
My son’s life got jammed up today. He asked me if I could be at his house when the smallest grand son, Zachary, got off the bus in the afternoon. I said sure I can do that for you.
Four weeks ago that would not have been my answer. A couple of days ago it was yes.
Life changed when Cheryl moved into Bridgeway Pointe. She adjusted pretty quickly. I think that it is taking me longer. She slept late today. Today I have babysitting duty.
And as luck would have it, I was not needed for duty.
Haiku: Too bad, how sad, Dad. | Zachary okay today. | No need for grand Dad.
Yesterday was a good day. It was also a long day. Today she is resting in her chair. She is completely asleep.
Comfortable
She did not stir when I put a blanket over her. She did not stir when I held her hand. She peeked out once as I looked at her to see if she was dreaming. As I sat next to her for awhile she mumbled and was moving her eyes and throat. Talking in her dream. When we were still home it was quiet enough for me to hear what she might be saying. At Bridgeway Pointe she is talking even softer. Sometimes her lips move but no sound comes out. I have developed the ability to read lips but not if she mumbles under what breath she has left.
Yesterday she had several visitors. Felicia helped her eat breakfast yesterday. Felicia is a wonderful asset when she is on duty in the Harbor. She is always cheery and kind. She is able to roll with the conversation no matter how odd it may be.
What a change a day makes. She was more active yesterday. Today she is sleepy.
Yesterday
Today, she is frail and “out of it.” I asked her about breakfast and she told me that she had popcorn. A new unused answer is that one. I wanted to ask if she had anything on her popcorn but I kept the follow up question to myself. She is thinking about and talking about some work project while she picks at perceived loose threads from the blanket I put over her earlier. Today, she off in lalaland.
This behavior is no different than when she was home with me. She would be pretty good one day and off in the weeds for a day or two after. I relate this to sleep and how well she slept the night before. Yesterday it was good. Today it was not so good.
Yesterday my daughter suggested that I might like to come to a school concert in which her youngest daughter was playing in the band. I decided that I could sit home and mope around or I could go to watch my granddaughter play her trumpet. I decided on the school concert.
Making bread, for me, is great therapy. After the concert we returned to Anna’s house to hang out for a little while. Eric had gone to a convention for collection of baseball cards and other baseball memorabilia. He is as is his son a fan of baseball. Eric was showing me some of his purchases. He was beaming with delight. I teased him about being a super fan. He replied that you have to have something that will take your mind away from daily things that are less desirable to think about. Those are not his words exactly but the intent of the words. For me that activity that takes me away is bread and baking and by extension cooking.
Yesterday when I returned from visiting Cheryl. I made Rye bread.This recipe from King Arthur is a favorite. Rather than find where I stashed it last time I printed it again and followed it exactly which is something I rarely do.
There is relief in kneading dough. It is much like getting a great back massage. There is aroma therapy from the oven as it bakes. There is anticipation removing it from the oven. There is blindness for a bit as the oven releases the steam from baking onto my glasses.
I set the bread to cool on a rack and went back to visit Cheryl who was struggling with resting and going to bed at night after having spent the previous night and early morning in the ER from falling Saturday night. With the nurse’s help I got Cheryl into her bed.
I am leaving in a few minutes to find out how well she slept overnight. When I left her she was laying on her left side as she did with me at home. I got a good look at the bruise on her face from hitting her head when she fell.
Breathe in. Breath out. Move on. Bake bread if you are able. Love deeply always. Take notice those around you who need help. Ask them if you can help.
My brother-in-law’s wife recently had some surgery to her neck and over the past couple weeks we have exchanged text messages and visits. I ask how he is doing and how my sister-in-law is doing. Often I send him my latest picture of Cheryl at Bridgeway Pointe. Yesterday we had the following exchange.
Thanks for sharing. Tari still has lots of pain !!! I am tired and frustrated !!! How are You ?? — 2:36 PM
Not tired and frustrated. With little to do for Cheryl, I think lonely and broken hearted. Is Tari home or in rehab? How did that turn out? — 3 pm
Rehab did not go well. Tari is home now. Waiting to see about Home Health Care. — 4:29 pm
In home physical therapy sessions? — 4:30 pm
I guess. Not sure. –4:31 pm
I wrote lonely and brokenhearted to him. It was the first time I admitted that to anyone.
I get up in the morning and realize again that I have no particular schedule. Nothing that I have or want to accomplish this day. Three weeks ago my day was centered around Cheryl. I made very few specific plans for me that did not include her somehow. I focused on getting her going, up and out, onward and into the sunshine. In the Autumn months when it is still warm, just four weeks ago, I conjured little trips to the places where we used to walk. I did carryout from a little chicken place nearby sometimes and we had a picnic. Her in her rollie chair and me waving the bugs away. In September I had my picnic supplies in the trunk of the car so that we could do that spontaneously (Carpe Diem). My main goal for each day was simply to get her out into the sunshine somewhere.
A new attitude is my goal today and the rest of my days. I need to be less broken hearted. Lonesomeness I think I can deal with. That feeling will come and go. Cheryl is safe and well cared for at Bridgeway Pointe.
Carpe Diem. Cheryl is safe and well cared for at Bridgeway Pointe. (Repeat)
This morning when I came to visit she was sleeping. I kissed her on the forehead my usual ploy when she was still home with me. It did not work this morning. I left her to sleep. I went home and invented an early lunch.
It was a Thai dish from Hello Fresh. It was quick and easy to make. Pretty good to eat and I have leftovers since I renewed the smallest amount which is two meals for two people.
I am back at Bridgeway Pointe it is almost 2 PM and she is still sleeping or she awakened and was not interested in eating lunch so she is sleeping again. As I was walking out the nurse told me that she had not awakened and had not taken her meds at all so far that day. She is off her schedule and very tired.
Yesterday afternoon she had lots of visitors. That kind of activity would often make her remain awake late into the night. Sometimes she did not sleep well at home. She would be very tired the next day.
Zonked out
This is that day. The night shift nurse was able to get her to take her 6 PM dose. I went to visit at 6:30 PM. She was still very tired but she had eaten about 25% of dinner by the nurse’s estimation. She is drinking very little liquid.
For the past couple weeks I have been sorting through and pitching out much of Cheryl’s punding piles that she had squandered away all over her office area. Many of these are simply random collections of old and very old birthday and Christmas cards.
Today I discovered a small envelop with a picture that had been taken of us at a formal dance in 1969. A treasure it is to be sure. But the letter makes reference to me as though I know the writer. She sent it to Cheryl at her address in St. Bernard.
I have no memory of this event. I have no memory of Ginny. Ginny did not pass along her last name. She only passed along her address on the envelope. Who is Ginny? To be continued…
This picture so old that I did not have a mustache or old wrinkled skin or gray hair. I was eighteen and so is Cheryl.
Adjunct_Wizard 