Ugh… Another sleepless night

She was up and down until about three AM.

And then she fell asleep.

Pretty soon she will awaken. In a few minutes it will be eight hours of uninterrupted slumber for her. The LOUD AND ANNOYING ALARM clock is set for 11:30 AM.

PST — again

I must be getting used to this sleep or lack there of activity. I got up with the first alarm at 7 AM as I always do to get her meds. I reset it to lay down for awhile. Cheryl did not stir.

It is summer time so even though the blinds are closed the bright summer sun brightens the room to, for me, unsleepable conditions. I got up and brought in the trash bins and fetched the paper.

I feel refreshed. My old man’s bladder didn’t disturb me from 3 until 7 AM. Sweet.

Carpe Diem and a new day begins.

Last Night She Slept

Nice. But she has slept for about ten hours so far. I know that everyone sleeps for different amounts of time and Cheryl has been struggling to sleep well the past two days but I worry about the changes in her sleep pattern.

And at the same time when I look inside my own self and think about it, I cannot change how she feels. I cannot change how the disease progresses in her metabolism. I can make her comfortable.

Recently Cheryl Hughes wrote about quality of life and what that means to her and her husband while he was still alive. She makes some good points but I ponder about my view of quality of life is something that I have projected onto Cheryl.

Perhaps on some days she needs twelve hours of sleep. Perhaps on other days she will need a mere four hours. (Those days will be tough.) As her care partner I hope that I can understand that nuance and help her rather than being angry. Angry is a label I place on feelings of anxiety, worry, concern, and empathy for her as her body deals with this debilitating debacle.

It may be all for naught. Recently we got our second covid booster. Perhaps she is reacting to that shot. Neither she nor I had any real reaction other than a sore arm with any of the shots so far. It is simply not understandable what is Parkinson and what is not. It is easy to blame the parkinson when most things are simply old age. Her sometimes in and out dementia inhibits how she tells me what she is feeling. I attempt to be patient and understanding. Sometimes my attempts fall sort.

Are you gonna help me sing?

Some people live their dreams
Some people close their eyes
Some people’s destiny
Passes by

There are no guarantees
There are no alibis
That’s how our love must be
Don’t ask why

— Toto

She is slowly waking up in the bedroom. A new day dawns. I have Alexa playing music by Toto. They were on CBS Sunday Morning today. Perhaps I will get to ride my bike today.

Carpe Diem.

Boosted against Covid

In my never ending battle to keep us safe and healthy and because Cheryl kept pressing me to do it, I scheduled us for a second booster shoot for the covid virus yesterday.

I got some chicken out of the freezer for dinner and helped her get moving in the morning. The morning was busy for me because it was my last care partner class. From that I have a mountain of valuable information about various service providers for the future. We are not there yet but in a few years we will be.

Linda appeared a little early and we chatted for a bit and then I was off to class. When I returned Cheryl had gotten cleaned up and dressed herself. I think the big new bed is giving us better rest overnight.

Our appointments at Walgreens were scheduled for 4 PM and 4:10 PM. We got to the store with plenty of time to fill out forms and prove who we are. Except for me. I had forgotten my wallet and ID. (Alas and drat!) As Cheryl came down the aisle pushing her U-Step walker I explained that I had forgotten my wallet. I asked her to sit down near the pharmacy desk and I would return in a few minutes. This Walgreens is about 5 minutes from our house. I zipped home and back to the store. When I returned she was sitting in the chair filling out a form on the clip board that the pharmacy assistant had given to her. Ordinarily this small task would have been confusing and incomprehensible to her. She had even found her ID and previous covid info in the purse of many pockets. I am beginning to understand that much of her confusion and mental fog of late may merely be poor sleeping patterns.

It is hard to overemphasize how important good sleep and rest is. The big new bed seems to help. One less Carbdopa/Levadopa CR seems to be beneficial also. She seems brighter during the day and not so inclined to pund around in her office at night. She is sitting in her recliner with me to watch a show or read a magazine article more during the past couple weeks.

She had plenty to eat at dinner. She even complained that I had not made gravy to go with the chicken. It was a normal (mostly) conversation during dinner between two people who had been married for 53 years. (Smiley face here) Later in the evening she felt a little chilled. I went to recover her sweater from the backseat of the car where it had been warming in the 90 degree heat for several days. We sat for a bit longer and then she got ready for bed. She returned and we watched the PBS show NOVA for an hour and we went to bed at 11 PM.

We were up again at 1 AM until about 3 AM. I am going to blame the booster shot. I was having difficulty also.

Today we slept until after 9 am. She seems rested. I know I am. It is off to the doctor today for our semi-annual wellness check. I feel well. She seems well.

Carpe Diem

Support Group

Last night at support group which is a joint support group, by that I mean some care partners, some Parkinson patients, the conversation was centered on care partners and the difficulty of that activity.

We often start by introductions. We had two new people, Teresa and her husband, Dale who has PD. Dale was recently (a couple years) diagnosed and they as a couple have been dealing with symptoms and life altering changes. Recently they downsized and moved closer in to the city and source of their medical care. They happily discovered Parkinson Community Fitness (PCF) was just a few blocks from their downsized house. Teresa has had psychological therapy to help her deal with her husband’s disease. When she revealed this fact she exchanged info with Jackie who had been pondering the same thing.

It is wonderful to see people helping each other through a difficult time. Life is a journey. Sometimes it is helpful to ask for directions. It is why this group exists. Cheryl originally started it. John and I took it over as her dementia worsened and she could no longer keep up with its organization.

Five questions — all open ended.

These questions are stolen from the Davis Phinney foundation and its theme of every victory counts.

What’s the best way to approach difficult coversations with my person with Parkinson’s or care partner? Take a deep breath and get rid of your anger. Remember your partner is not doing or not doing something to annoy you on purpose. Parkinson’s disease interlaced with dementia is complicated.

I don’t want to nag, so how do I encourage my person with Parkinson’s without harping or nagging? This of course is a source of friction in any marriage that can be made worse as one partner cares for another with a chronic disease. Most care partners were okay with nagging if it proved useful. I know I am. it is the guilt that shows up later that bothers me most.

How can I tell if I’m expecting too much/too little from my person with Parkinson’s? Care partners often maintain expectations of their previous life before PD entered their partner’s life. We can see the slow movement issues. We do not always understand that mental processes slow also. Decision making can be challenging. Menus in restaurants can be extremely challenging.

How can a Parkinson’s care partner live well today? Find time to do things that you as a care partner want to do. Find and do things that are yours and yours only that you can do away from PD and caring for your partner.

How can a Parkinson’s care partner be loving and supportive but also honest about how they are feeling? Most couples are open with each other. It is hard to stay married for long without talking.

Melanie spoke about feelings of grief as she and her husband began to recognize how life changing this disease can be. For Cheryl and I, we have noticed that it can be a very real sense of loss. It is hard to be upbeat when life beats you down. It is for us a one day at a time thing.

Hence my theme “Carpe Diem” which I say to myself over and over lately merely reminds me to look for the good things now. Take advantage of when she is feeling good. Forget about lamenting what could have been. develop a network of helpers to be with Cheryl occasionally so that I can be with myself.

I have not added Edie Kynard’s prayer ( modified) for a while but looking over my notes from last night and writing this piece this morning caused me to find it back.

Carpe Diem.

So Is It Okay To?

I am currently attending a class for care partners. It is put on for us folks dealing Parkinson’s disease interlaced with dementia and Alzheimer’s disease in our care givee. We have spent a lot of time on taking care of ourselves and making sure we are healthy mentally and emotionally as well as physically. It it easy lose track of those things when you become very involved in the day to day care of another.

Time away from care giving is very important but is it okay to change the social situation a bit and let people in that are in a similar place in their lives?

The idea of a support group meeting allows this to happen but there is a different social dynamic in a casual lunch, friends collected in a bar to solve world problems or gathered for card games with casual conversation. Support groups tend to try being informational rather than random conversation. Support groups that are attended by both the chronically ill patient and their care partner tend to be awkward somehow. If the care partner should feel the need to vent and whine a bit, they will feel embarrassed to do that.

Is it okay to change the social situation a bit and help the Parkinson person participate with you and others.

Admittedly it is a different dynamic. The caregiver has the social burden of not correcting their partner in conversation. Dementia does that to conversation. I want to jump in and save her from embarrassment. What if no one did that? To an outsider it might sound like a game of post office gone bad. So what?

If Frances was elected president then pumpkins would cheaper at the store. That’s true. That’s true and the police are trying to find new shoes for their cars. Those lights on top can fall off and the car hurts from that. Is there any ketchup for the ice cream? Did she bring extra napkins. I see a bug. Where is Scott? Is he coming? I have noticed that more and more people are married to our children. How many kids do you have? I have about fifty. Did you put up the sick people’s sign on the car? I need to make a list so that everyone knows what they are bringing to Thanksgiving dinner next week. I need to call Sr. Janet and remind her that the kids did not give us any raffle tickets.

And on and on. I used to jump in and help her with correct thinking or at least keep her from making embarrassing phone calls. The range of mismatched topics is endless and for some reason our kids turn up in it a lot as children. I also realized at some point I felt embarrassed. Cheryl did not. I stopped thinking seriously about it.

I actually think of this often. When Cheryl is out with her long term friends, people that she has known for many years but has not seen much over the past few, she puts on her “showtime” mantle and converses. When she returns home she is often exhausted from keeping that going. What if the social occasion did not require any sensate being to understand the conversation? What if there was no sense of or in it? Would she be less exhausted?

There are many things to ponder. Carpe Diem.

Morning “News” Programs

Yesterday we picked up one sister of Cheryl’s and went to visit another sister of Cheryl who lives about forty miles down the road. It was a very pleasant visit sitting on their great front porch perched up a hillside with a nice view of the Ohio river to the north. We had a great conversation while some extra kids and grandkids showed up to drive go-karts and minny bikes over the hills and around the property. Sometimes it seemed like having a conversation on the berm of a nearby highway. Nevertheless it was a good day and this morning Cheryl is sleeping in for a bit.

Which leaves me with my morning coffee and watching the morning news shows. It also leads me to think about what is news to me. The morning news shows, as they always seem, are interspersed with the latest political dilemma, complicated financial maneuvering that makes money less valuable but no less important, some actor/celebrity fall-out from marriage or their manager, the best guacamole recipe or another use for hot dogs, the expected weather for the next week (it is remarkable how this is always bad news), the latest book usually a tell-all memoir – today about growing up as a child of abusive news reporters in California, and other useless, to me, drivel. I suppose a breakthrough therapy for Parkinson would be of much more interest. Sometimes news is merely superfluous information and blather.

I turned it off because I noticed I was using it as background noise for working today’s Wordle and a couple other puzzles I have become fond of working.

I like crosswords. I suppose that is my father in me. He liked crosswords also. It probably sounds odd that I care little for Scrabble since it looks much like a crossword when completed. I think that has mostly to do with competition which I also care little for. I am not competitive except with myself. Crosswords and stroke-play golf fit into those self competition categories and maybe bowling.

Journaling and writing and blogging is also an interest. Today is also wash-the-sheets day and I am starting later because she is sleeping in.

Carpe Diem.

How Many Things Change

It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

For the First Time Early this Morning

Cheryl went to lunch again with a friend yesterday. Barb had arranged a luncheon with another member of the church decorating committee. (See my previous post)

They were gone for a long time about five hours. When Cheryl got home we talked for a bit and she went to lay down. I think she actually fell asleep for about thirty minutes. Or, at least, she was very still for a while when I went to check on her about an hour later.

In the evening she declared herself tired a about 10 PM and she went to bed. After a few preliminaries she was laying down at about 10:20. I remained up to read as I usually do before retiring. When I came to bed about thirty minutes later she was still when I laid down.

At 1:30 AM or so she was restless and awake. To the bathroom she went. I helped her a little with the toilet because she has confusion and balance issues in the middle of the night. She lamented that she really needed to sleep but she was fidgety and agitated. Nothing I could do seemed to help. I began to think that my presence was disturbing her. She couldn’t get comfortable.

She stayed in our bed. I got up and opened our sofa bed in the living area. I had never slept on it before. It was a new purchase we made with the mad money that we got from the federales during the height of the pandemonium. After a couple false starts and finding a blanket and my pillow from our bed. I fell asleep from 2:30 until about 5:32 AM when my bladder reported fullness to my brain. That is a much longer span than laying with Cheryl fidgeting her way back to sleep. The sofa sleeper itself while not perfect was quite comfortable to sleep on.

I will have to study the living room area floor plan and think about things some more. I had to rearrange furniture in the early morning hours to open the sofa sleeper. That was a little inconvenient in the dark.

Perhaps we are at the stage of her disease and our lives when we will need different sleeping arrangements.

Alas and Carpe Diem

Reminiscing and Punding

In a previous post I wrote about finding a little card entitled “The Art of Marriage” in Cheryl’s purse. As I unwrapped and unfolded the little package in her purse I was very aware of the fact that it was none of my business what she kept in her purse nor why she kept those things in there. Nevertheless, faced with various requests for help, like, I can’t find my black comb or I have lost my glasses, I try my best to keep up with how objects and things are pared up, associated together in her newly confused mind.

I am guilty of looking around through her stuff to help her keep track of her stuff. I have no other interest in her stuff. That is my defense when I am caught. So far so good. I have not been caught yet. She thinks I am really good at finding things. If you know who would think to look in the freezer for a comb or used Kleenex for example, then you know someone who is care giver to some person with some variety of dementia.

Punding is a term used by the Norwegians or Swedes to describe the activity of mindlessly sorting or aligning objects, often random objects, in a fashion known only to the person doing this. I believe the term means “blockhead” Swedish.

In Cheryl’s case this behavior manifests as organization of articles and documents in preparation for a meeting or some other activity. She ran the early computer tech program at Nativity School when our children went there. Having no educational background caused her to be constantly looking to others who did, attending meetings and reading articles. She was excellent I am sure simply because she was aware of her weaknesses. She also helped her mother send cards and notes to family and friends to thank or take note of various occasions such as birthdays, holidays, anniversaries, graduations or merely an invitation to dinner. To this last Cheryl has kept many thank you notes from her mom for Sunday dinners over the years.

She gets these out and sorts, re-reads, thinks about her mom and shows them to me as though she received it in the mail today. Often she will say, I got this card from Mom. Or I got this Christmas card from (whomever).

She collects these in various clumps and collections. Some are in manila envelops. Some are in small gift bags. Some are collected in stacks with a rubber band around them. Some are in stacks held together by spring clips. Sometimes they may make some sense to me, sometimes they make no sense. No chronology. The collections can be totally random.

As she looks at the cards she reminisces about the old times. I used to point out that she was looking at a five year old Christmas card. I find that unimportant to do now. The activity is totally harmless. Late in the evening she is amenable to “I can help you with that tomorrow. Let’s go to bed and rest so we are more alert to work on that.” And we trundle off to bed tired from another day.

Carpe Diem.

The Last Day of April

A Happy Birthday celebration — a week or so early. A poorly written sonnet:

Tis the last of April, just beyond reach

is May the tenth the date of your birth

it’s said by some, it may have been breach

No matter the details, my life gained great worth

That night that we met, our story yet untold,

unknown at the time how beautiful our life;

no one but the Great One could have foretold,

the thrill in my heart when you became my wife

Here surrounded by loving and caring siblings

To celebrate another year past with great glee

I wrote this sad poem, earnest and small scribblings

with the deepest love. I hope you agree

Our life together is amazing as your mom would say

I think so too, so, Happy Birthday!

– Paul

Carpe Diem