For Two Nights – in a Row

She has slept solid. Happily for me, I have also.

Cheryl is much better doing the day as are most people after a good night’s sleep. Her little visitors are still around here and there but she seems to know they are not real.

We have had lots of discussion about what we can do to get to bed at a reasonable time. The sun always looks better after a good rest overnight.

This picture is one Ken’s sunrise pictures.

Carpe Diem.

It Must be a Terrible Thing to be Losing Your Mind

And be aware of what is happening.

These days Cheryl is certain that we are not home and wonders when we are going home.

In the background she knows she is home.

But maybe not.  Cheryl has lost most concept of time.  Calendar time,  Day of the week, hour of the day, time until the next event, how much lead time to get dressed or ready; all of these time conceptions are gone. She becomes angry with me reminding her how much time she has left. Maybe I am doing it wrong. She talked (and talks) in implication and inference but my conversation is direct. When she says she is going to do something I assume that she going to do it and I will reminder of her conversation, even help steer her toward her goal that seems to anger her sometimes. It is not my intent to anger her but merely to remind her what road she started out with and keep her on it to completion.

Little girls seem to come and go. The woman who takes care of the little girls seems to come and go with them. Others seem to move her stuff around. And then daylight returns.

Carpe Diem.

January Eight

I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.

Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.


So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.

Guys chasing a suspected super nova…

The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.

Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.

Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.

As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.

Carpe Diem!

Cheryl’s Cookies (Not the Commercial Venture)

Living with a parkie makes me alert to new information when it comes up. That being said I do not always recognize my new task. This is about becoming a master cookie maker on the fly.

Executive function

Dementia occurs in about 40% of Parkinson’s sufferers. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective. Cheryl’s reaction often is anger to some perceived slight or merely, the question, why do it that way? (It is an engineer’s question.)

It starts with me. Words and question structure is important. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly.

How to do

Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.

My perception of making cookies is one of a trivial exercise in baking. That seems to be an incorrect perspective. Cheryl’s helping me. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. (smiley face)

Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot.

Where to start

To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory.

But not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make suggestions such as, yes, we have put that in the mix. Shall I add the butter?

Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.

How does one check for doneness? It is common sense! Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…)

Cut out the Crap in the Conversation

To a person standing nearby this conversation can sound rude. It sounds like one person is giving another orders and it can be that way. If, however, it is done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking.

The onus is on the care partner to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).


We did wind up with our first battle batch of cookies. Although they are a motley crew, they taste fine.

Carpe Diem.

Right and Left

Recently (yesterday) I convinced Cheryl to go to a chair yoga class. I thought it would be good for her. In my sometimes helicopter care partner mode it seemed to me that I might be able to find something for her to go to most everyday at PCF. She often wants to get different things that she uses in class so that she can do the exercises at home. But lately she does nothing at home that looks like exercise. There is nothing unique in that, many people to not.

Today when I talked to her about going to class she said, I don’t want to do that. I have a hard time knowing my right from my left. I have problems with a similar thing I said. I always have to say the alphabet jingle in my head. Elemenopee… I thought about what I said suddenly. Why was it necessary to make it about me?

She went on to say that all that reaching and stretching was hard. Somewhere in her conversation I realized she thought I was taking her to chair yoga. I spent another ten minutes or so convincing her that this class was one that she had been taking all along. It was not a new class. I realized that I was rushing her into trying new things to exercise her body (tired with PD).

Apathy and lack of interest to try new things or finish things once started is common in PD sufferers. I found myself reading about Apathy in Parkinson’s patients while she was exercising at PCF this afternoon. The internet of all knowledge directed me to Michael J. Fox; the APDA site; the Parkinson Foundation and others. All say approximately the same thing.

Apathy describes a lack of interest, enthusiasm or motivation. It interferes with the effective management of Parkinson’s disease (PD) symptoms, since apathetic people are less inclined to do things like exercise and follow their medication schedules. …

Apathy can be frustrating for people with PD, caregivers and loved ones. Understanding apathy as a symptom of PD and finding ways to cope with it are key to ensuring a good quality of life and for maintaining good relationships with caregivers, family and friends.

Therapies

Currently, there are no proven effective treatments for apathy — no pills or special therapies — but structured activities and opportunities for socialization are a useful approach. A regular routine, continuing to socialize and exercise even if you don’t’ feel like it…

from the Parkinson Foundation website

As I was reading along various sites, Cheryl was exercising three feet away. Same things are easier to get her to do. By that I mean things that she is familiar with, things she has done before. And as I watch her do the exercises she changes. Her motion becomes more fluid and steady. She does not quit. She pushes herself. And tears come me. What’s up with the emotional response in me? What a pain PD can be to people close by. Once she gets started all can be well. As class moves on she is an enthusiastic participant. I am merely an observer and not someone to argue with. (smiley face with tears)


More … My own thoughts … Usually when I write one of these messages to myself I struggle with what point I am trying to make. Not so here. It is easy to drift into making something about yourself. I believe that it is a natural act. To understand some thing, some idea, some opinion, some action of others we relate it to some local knowledge we already have. Educators call it scaffolding.

What happens when one has no similar knowledge? It can be made up out of whole cloth. It is natural. We, at least many of us, want to empathize with the other person’s unsatisfactory experience.

A life lesson, I suppose. Maybe an AHA moment appeared for me. Try to stop making it all about myself and still empathize with Cheryl. Or, at least, do not vocalize it to her.

Carpe Diem.

Not in a Long Time

Sometime ago about two years ago Cheryl struggled with fainting.  The neurologist blamed it on orthostatic hypotension and she does have some of that.  It is  measurable.  Her standing,  sitting and laying blood pressures are all different.  But two years or so she had fainting spells sitting at breakfast table after eating while working the puzzles in the newspaper. I got so used to it that I parked a pillow from the couch one one of kitchen chairs to be handy when I laid her on the floor.

Today we got up later than normal after Cheryl got meds on her 7AM schedule.  She washed her face, brushed her teeth and we had the church funeral discussion.  I made blueberry pancakes.  Her alarm went off for her 10AM Sinemet and Entacapon so she ate them with her vitamins and pancakes.

After eating I got cleaned up myself , sorted the laundry and dressed the bed. It is Friday (laundry and checkbook day). I got the washer started on the first load and staged the rest in the utility room near the washer. As I came back into the living area I noticed Cheryl seemed to be asleep in the chair by the kitchen table. She had fainted midmotion while removing the snap top of a container of crunchy snacks she intended to munch on while doing the puzzles. She was seated stiffly in the chair.

I got a pillow from the couch and laid it on floor and laid Cheryl down. She was stiff. I put her feet up on the chair. In the past she would wake up immediately after I laid her on the floor. She did not today.

This morning she laid there for awhile still out of it. It was unusual from a couple years ago. The stiffness was also unusual. Previously she was very limp. Eventually I was able to get her up off the floor and into a chair again. I got her walking frame but she was unable to pick it up off the floor. Tried to help but she kept pushing down instead of lifting up. It was as though her brain had the directions reversed. I got her to sit again and I got her transfer chair from the garage and with that I moved into the bedroom and got her to lie down.

She had very low blood pressure. We have meds for that. I gave her the 1PM dose of BP medicine at about 11AM and coaxed her to drink more water. I nagged and hounded her to drink more water, orange juice, tea, coke, whatever she wanted. There is a background theme of anxiety about incontinence at work here.

Eventually she came back and realized we had missed the mammogram appointment. We also missed chair yoga. We made it to the finger exercise class. The checkbook balanced and the laundry got done. All was well again. A few more steps down the road were behind us.

Carpe Diem.

Don’t Think, Just Do

Words from the Karate Kid and advice given to Drew on B-Positive tonight.

It is always possible the think and over think one’s situation and find a reason to not do something which could easily be very beneficial to one’s own well being. I discover this often with care giving to Cheryl.

Today Cheryl’s cousin-in-law (a relationship I just made up) made a very kind offer to me. Let me back up a bit, her CPAP machine bit the dust. She thought it was merely the cord but as it turned out it was dying long before it bit the dust completely. I brought it home to try to figure it out. Alas I could not. I do not have a manual or even know how it is supposed to operate.

She came to pick it up this morning and as she had never been to our home I showed her around and we chatted for a bit. I mentioned that I was taking Cheryl to her exercise class in about an hour. As she left I walked out to her car and she said that she did not live very far and if I needed someone to sit with Cheryl while I did something or wanted to ride my bike for exercise, she would do that.

I choked me up for a second. A kind and very generous offer of help, freely given, not requested, completely out of the blue. I sent her a text a while later and asked how much warning she might need to do that for me. She only needed a day or so warning and even suggested which days might be best. I thanked her profusely.

I do not ask for help with Cheryl, probably because my maleness gets in the way of that. I am planning, not thinking.

Some days the road seems smoother and less treacherous when you are not focused on the potholes coming up.

Carpe Diem.

They are back tonight

The little people who used to visit are back. That is my own little joke. The little people never really left our home. I was merely ignoring Cheryl’s behavior.

They were back in a vivid sense to Cheryl. This chair arrangement is left over from their visit. She was showing them the pictures on the frame. She went into full on grandmother mode describing the picture to the kiddos.

I asked who was there and she replied Natalie and Max.

We left a little while later to got to our support group meeting. While there she asked if I had called home to make sure the kids were all right. Apparently they were more vivid than at other times in her head. When we returned home she looked for them.

We sat and watched Bob hearts Abishola which is her new favorite show. The kids seemed to be gone for now.

When I tell her that there is no one else here except us I feel as though I am standing in the back of a crowded room saying this to her.

Today, earlier, she asked me to rub her hair conditioner into her scalp. I do this once or twice a week when she asks. She referred to me as “Mom”. I had a little petulant moody reaction and said “I am not your mom.” She said, “No. You are my dad.” I replied that I was not her dad either, I was her husband. To which she said, “But you are the one I love.” (AHA! Edie) She merely could not pull the name and relationship out of her head.

It was another Aha-moment in our life together. It was a very important moment. All of my life as an engineer words have had a very specific meaning to me. Perhaps the words should not when understanding Cheryl’s needs.

Carpe diem — hunt for the special moments of insight and empathy. Those are special. If you miss them they may be gone forever.

Frustration and Anger

Lately I have been experiencing a bit of what I think of as Caregiver Burnout.

We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.

Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.

I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂

An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.

Over time I have taken over the duties that she used to do in our home.

In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.

It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.

At least we are vaccinated and boosted. The road is pretty long even when not visible.

Carpe Diem!

October

Holy Moly it is October.

The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.

Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.

Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.

Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.

Carpe Diem. Happy October.