Professional care

Wordle and Remembrance

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Knowing They Can Fix Me

The gentleman said as a response to an unknown question in an advertisement about a medical institution. I was watching the morning newsy program(s) and thinking about the day. It is a concept that many, myself included, wish for. The hope is that a higher power, a greatness, a consciousness greater than one’s own will take care any difficulty and fix it whatever it is. Is that realistic? What about self reliance? All of this became too hard to think about, so, I awakened the New York Times Wordle game page and did it for a minute or two of distraction.

I inadvertently touched the archive button which I had paid no attention to previously. I found that it would let me go back and work on incomplete games. (down the rabbit hole I went) November of last year was when Cheryl moved to Bridgeway Pointe in the memory care section. There were a half dozen incomplete puzzles. I kept going backward in time working puzzles and thinking about what was happening in our life.

I got to my birthday in August of last year (2023). I did not finish the puzzle that day. I cannot recall anything about what went on that day. Perhaps it was merely another day filled with Parkinson. That goes without saying. The beauty of a journal or a blog is that often I have noted what happened on a certain day in the past. From my blog/journal:

—

That day I wrote about our day. Cheryl was struggling.

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I am not surprised that I cannot remember my birthday last year. The event itself was unimportant to the task of keeping up with her Parkinson and her dementia. Perhaps one day an oncology style doctor will emerge to straddle the care complexities of PD, dementia and dying which no doctor seems to be able admit is the prognosis for this damnable combination of symptoms and inabilities. The phrase – no one dies from PD, usually you die with it – is very much a distinction without a difference. In fact it might peg the meter on my bullshit detector.

Perhaps next year I can recall what I did this year for my birthday and smile instead of cry.

Carpe Diem.

Sunday Awake Day

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My cheesy grin

Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and  active and talking to someone else who is invisible to me. This day is no exception.

She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.

The loop is the most fascinating thing. She loves to loop it around her fingers.

I take every opportunity to hold her hand.

Carpe hand holding Diem.

When I Visit Cheryl

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When I visit Cheryl which happens everyday I notice things. Some of these are after I return home. I am not so concerned about where I put my shoes after I take them off for example. When Cheryl was here with me I was constantly concerned with trip hazards lying about in our condo. Occasionally we would argue about things like doormats and trow rugs, all of which I had removed from the condo over time as her ability to move and walk and balance became worse.

I notice how the staff interacts with the residents. They are generally kind and attentive. They are, I imagine, acutely aware of their own staffing levels.

I notice how the residents interact with the staff. Helen, another resident in the Harbor with Cheryl, is awake and alert and talkative today. Last night the Super Bowl went into overtime. It was not won until just before 11 PM, so, I imagine that several maybe most of the staff sat up and watched it until the end like I did. The difference being that I did not have to get up at 5 AM to make the 6:30 AM staff meeting. Some of the staff have that combination of Monday morning sleepy grumpy going on. I get that. I used to be a service/engineering manager. Mondays were often unnecessarily busy while we picked up all the stuff that fell on the floor over the weekend.

I notice the level of staffing. It is less so on the weekends as one might expect it to be. If there is one single area that I could suggest could be improved it would be weekend staffing. The world in general revolves around folks not working weekends without some sort of extra incentive which is often money. Rewarding altruism and empathetic caring for folks who cannot care for themselves is hard work for the administration and work life balance is strained when the work and life are similar. Conjuring useful rewards for weekend work like appealing to their sense of altruism is probably tough.

I notice the changes when the shift ends. The next group comes in. It is generally a smooth transition.

I hear the little discussions between the staff – what’s important to them.

I also find that if I am not the full time care partner I was when Cheryl was home with me I am able to have opinions about how others do the same task. I wonder about how I might do it differently. I keep those thoughts to myself. Juggling the needs of a dozen people at different stages of Alzheimer’s, Lewy body, Parkinson’s and other forms of dementia is more complicated than I had to deal with at home. My personal dilemma was remaining kind and thoughtful with lack of sleep but a lot of love. Love is sometimes hard to find if you are Mr. Lack-of-sleep-cranky-pants.

All of this wandered though my thoughts today as I visited with Cheryl and sat with her while she dozed in her chair. She was slightly awake but sitting with her eyes closed. She was uninterested in having company. I just held her hand for a bit and it seemed like she relaxed and fell into a nap. I miss her daily company.

Carpe Diem. ( Carpe Somnum when it is time.)

Christmas Season 2023

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(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.

Carpe Diem.

Yesterday was Long

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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.

Carpe Diem

Not Too Negative About It

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As we move down the road of Cheryl in a special place that can take care of her all day long every day, it gets easier for me to leave her. I am assured that she is getting the best care for her at this time.

The past few weeks when she was still home and it was all me, I started feeling anxious and upset with her lack of motivation to help with her own well being. I knew that her disease was getting in the way more. I was frustrated with her lack of cooperation with me with caring for her.

I was perhaps stepping on the last little bit of control that she had over events in our life. My whole waking day was consumed with her. I did not mind that but looking back, from her perspective, I was overwhelming, helicoptery and just plan annoying. There is a difference between accepting help from someone and having unwanted help thrust upon you. I was drifting into the thrusting arena.

This current situation is different. I can step back and let the aides do it – whatever it may be.

I am a husband again. Making sure has has all she needs to do for herself – whatever it may be.

Carpe (deep sigh) Diem.

Endless Days

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A dismasted ship in the old days was uncontrollable. It floundered in the wind. My week has been like that. Floundering in the wind.

My worst time is in the afternoon. There is no one to cook for, care for, talk to, argue with, pick up after. She is in another place even when I visit her in that place.

I feel dismasted.

Carpe Diem.

Heartache

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The heartache is indescribable.

Cheryl moved to her home at Bridgeway Pointe today. The heartache is truly indescribable. How did we get to this point? When I look at her I see the woman I fell in love with many years ago. We are older and grayer now. My love has only deepened over time. The whole process is so gradual.

A new phase begins. The previous phase is complete.

Our little house is so quiet.

Carpe Diem