Parkinson’s

Rock Solid

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This morning she dressed the bed. I went back to the bedroom after she announced that she intended to get cleaned up and get ready for exercise class. The bed was put together already. I was overwhelmed with emotion. She had slept solid most of the night.

My heart leapt for joy. She has not made the bed for a couple of years. Long enough ago that I have forgotten when the last time it was that she made the bed.

We had pancakes for breakfast but she wanted donuts. (Smiley face).

At about 4am after a trip to the bathroom she asked me, when is church? Three hours later she asked me if I had gotten donuts for breakfast. There is an association in her of church and donuts.

Previous donuts

Maybe I will stop and pick up some donuts from somewhere today so that we have them tomorrow morning.

Every day is a new day.

Carpe Diem.

An Icy Day in February

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The puzzle is completed. Hallelujah! Kill the fatted calf. The Christmas 2017 puzzle is complete. So, now the question is what to do with it? I suggested that she break it into the tiny little pieces she started with and pass them on to her sister Nancy. She is still thinking about it but that is probably what will happen.

Who knows maybe this is a new hobby. It certainly is an occupation once it starts. Cheryl seemed very content while this whole process was happening. Cindy is an enthusiastic cheerleader and champion during the activity. I was not gone for a long time but when I came home they were puzzling away.

I started dinner. I had been out in the rain that we had ahead of the icy wet snowy crap that came today. While out I decided it was a good day for stuff soup.

Stuff soup:

  • 2 small onions chopped
  • several (5) carrots pealed and chopped
  • several (4) small potatoes pealed and quartered
  • several (5) stalks of celery chopped
  • a head of broccoli chopped – the stems are good in soup the flowers tend to disintegrate like peas.
  • the end of the bag of frozen corn (maybe ½ C.)
  • half a cup or so of frozen peas.
  • ½ lb. of mystery beef – bought out of the get rid of it soon shelf at IGA – chopped int ½ in. cubes
  • some whole wheat pasta for health reasons.

In a dutch oven put about 2 tablespoons of olive oil and dump in the onions. Stir them when they start to sizzle. Rinse the carrots and celery and when you are satisfied with the onions, let them brown a bit, dump in the beef. Brown the beef for awhile and enjoy the aroma. When the kitchen smells like a good diner, dump in the celery and carrots. Stir it up for a bit and put the lid on and give it a few minutes. This is a good time for a little salt and pepper to taste.

When you are ready dump in a box (32 oz.) of whatever broth you like. I used beef broth here. Bring it all to a boil and start the oven set to 300F.

Dump in the frozen peas, corn and chop the broccoli into small pieces. When it starts to boil again, dump in the broccoli and put the lid back on and stick in the oven for 30 minutes or so.

Add the healthy pasta at the end of 30 minutes and set the timer for 10 minutes more. Set the table and find some rye bread to go with everything. Put out the butter, bowls, silverware, etc.

Sit down in the kitchen to eat so that the puzzle can be viewed from afar. It is better to leave the dining table undisturbed. Speak to the small children attempting to mess with the puzzle even if you cannot see them.

Maybe I should look for the special table to build the puzzle on. I kind of liked having dinner at the dining table. We sat closer to the little apparition girls and I could chase them away as necessary while eating. The little girls seem to show up a lot at dinner time.

Everyone is smiles when the puzzle gets finished.

Carpe Diem.

It takes Time

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Many months ago Cheryl started on this puzzle. I wrote about it before. I could figure out exactly how long ago but the specific span of time is actually unimportant to the story. Last week when Cindy came to sit with Cheryl for a bit so that I could go do whatever I wanted to do by myself, I said to her that she could help Cheryl with this puzzle that she has been ignoring for months. I said that thinking that it would go over like the proverbial lead balloon – what is a lead balloon? – but Cindy is an enthusiastic puzzle doer and she sucked Cheryl along with her. I left to do a couple errands and take a walk.

Two hours or so later when I returned Cindy and Cheryl had not moved from the spots alongside the dining table where I unrolled the puzzle and reinflated the tube that the felt surface was wrapped around with the trapped puzzle pieces. Cindy had Cheryl hard at work sorting pieces of like color and they had assembled several chunks of pieces to figure out where they fit in the picture that came with the puzzle. They did not finish it that day. It is a half thousand pieces of a complex image of small town Christmas.

The picture when completed

Lots of colors are involved. We bought this puzzle several years ago. I think we may have had it for a couple years by the time the pandemic broke into pandemonium everywhere. It came from a Barnes & Noble book store that we happened to be shopping in for one of the grandkids. Cheryl passed by the puzzles parked in the aisle and was inspired to retell the story about someone at Bridgeway Pointe assisted living facility who worked puzzles all the time and lived down the hallway from her mother. I remarked that she should pick one out to do for herself and she selected this Christmas scene.

Leaving it on the dining table is somewhat of an inconvenience at dinner time as I had gotten into setting the dining room area for two. We had used mostly the kitchen table when we first moved into the new condo and reserved the dining table for company. As I took on most of the cooking duties I decided to use the dining area more instead of preserving it for non-existent company. Had we stayed in our old house I suspect that I would have gotten to this point there also. For now, we are back in the kitchen for dinner.

For several days after Cindy’s inspiration we walked around the puzzle on the table awaiting Cindy’s return. I did not mention it. Cheryl once suggested that she could put it in her office and I persuaded her that it was not in the way of anything. She was worried that her little people that she sees occasionally would disturb it but they have not. Last evening she started to work on it. It was a spontaneous move on her part. She worked on it for a bit. I texted this picture to Cindy. She responded with, “Great! Don’t let her finish it without me.” There is not much danger of that, Cindy.

I checked on her during the evening. She worked on it for about an hour. She found two pieces that seemed to fit together but they did not. I was able to help her find a couple pieces and fit them somewhere in the picture.

Her memory seems to be going faster. She looks at a piece and as she looks at the picture the shape is lost in her visual memory. It is a long process.

Carpe Diem.

For Two Nights – in a Row

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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

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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.

A Third of the Way

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It is now a third of the way through January. Cheryl and I went out to a small diner on the other side of town to visit with one of her life long friends.

They call themselves the “Clementines”. They attended grade school together and many attended the same high school. They number about a dozen and they used to meet every other month at a local pizza place to chat and reminisce and catch up.

Cheryl was the the original organizer of this group and convinced the others to come and chat. She teased many of them into it at first. She kept the friendships alive. And then Parkinson’s hit and took away her organization and her cognition.

At first she hid it well. It drove her crazy that she might forget something or someone. The computer, something that she had used throughout her working career as a database analyst, something she wrote code for to extract information, became a confusion. I (behind her back) asked one of her friends t take over the organizational task. Kathy stepped up and did it.

Covid struck and they moved to Zoom. I set up the zoomeetings for a bit because I had a corporate account with the community college that I work at part time. Kathy got her own license because she was using Zoom to visit with family.

Today we went to lunch with Marilyn who was unable to zoom a few nights ago. It was a wonderful lunch. Cheryl was able to talk to someone other that me in person.

Tonight for dinner I made oven fried chicken and roasted brussels sprouts with carrots. But for dessert I made Apple Oatmeal delight which is a recipe from BookBakeBlog’s site pages. It was pronounced good! Write that one down!

Apple Delight (not BookBakeBlog’s name)

Life is a journey. Enjoy the apples (and other fruit) were you find them. Carpe Diem!

January Eight

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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!

HAPPY new year and other Random Thoughts

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It was a miserable eve.  Cheryl has had her meds adjusted a bit to help with creeping dementia issues.  The doctor has been slowly increasing the dosage to creep up on the optimal dose. The most common side effect is nausea and vomiting. The new prescription is at the optimal dose and it appears Cheryl cannot tolerate it at that level.  She has been sitting on the bathroom floor on and off for most of the afternoon. 

As she was building up to this dose for the past  several months, I expected to see some behavioral changes.  I have not. As the situation got worse I terminated giving this med to Cheryl.

But last night (New Year + 1) was very difficult and very different. I thought that perhaps this drug did not work for her but it did reduce and eliminate the strange compulsive behavior that she exhibits. She also became delusional. She was certain I did not belong here.

On the next day, Monday, I called the doctor’s office and got her nurse practitioner on the phone. It is hard to explain how excited I was to have someone call back that knows Cheryl and her condition and has seen her on a regular basis. I explained what Cheryl was going thru and that I had discontinued the medication to relieve the symptoms. The NP recommended that I adjust one of the meds she was already taking with no ill physical effects and perhaps Cheryl would sleep solidly through the night and do better the next day. It worked.

Still searching for clues at the scene of the crime (Joe Walsh).

It’s a new day.  Today is football day.  Seems like everyone everywhere is tuned to some kind of football game.  It used to be, many years ago, a time to visit our in-laws.  Our niece’s birthday was January 1st.  She died a year or so back not from the Covid dilemma but from other health issues.  She had not been well for some time. We have not celebrated her birthday for some time.  Families are complicated and estrangement is often part of the complication.

It’s a new month.  January is often cold but it seems to take winter some time to get started. This January is no different. It is rainy and poopy outside today and the temperature is expected to drop into the upper teens overnight. I am so glad we live in the times we live in. It will not be necessary for me to add coal to the fire for overnight nor will it be necessary for me to huddle underneath a buffalo skin.

The current federal administration authored a congressional bill referred to as “build back better”. The previous administration had a motto of “make america great again”.  Both of these are ludicrous. Both imply that there is something not quite right with now.  That is absurd. Nothing is wrong with now.  We are not heating with coal or huddling under buffalo skins. Slowly, ever so slowly we are converting to electric powered transportation.

Now is not perfect, of course, but it is greatly better than what was. We often think what was is better that what is. Still searching for it, clues, that is. Try to enjoy and be in the moment.

It’s a new year and thank God for that.

Resolutions? Yep. Do better at living now not ago. Try to not get fat living now.

Carpe Diem.

Cheryl’s Cookies (Not the Commercial Venture)

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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.

Spelling Bee

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Early this morning as I came back to bed Cheryl spoke to me. Listening, I quickly discovered that she was not speaking to me. She was participating in a spelling bee.

The current word was “manage” as were the next three words. The teacher or whoever was giving the words out eventually moved on to anger, agree and message.

A cough awakened her and she asked me, what’s next?

I told here today was laundry day and I would make blueberry pancakes for breakfast.

I like blueberry pancakes, she replied.

Carpe Diem.