Parkinson’s

The Saddest News

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Or what woman, if she had ten drachma coins, if she lost one drachma coin, wouldn’t light a lamp, sweep the house, and seek diligently until she found it? When she has found it, she calls together her friends and neighbors, saying, ‘Rejoice with me, for I have found the drachma which I had lost.’

Luke 15:8-10

In December of last year I purchased a chain of gold for Cheryl to put her 25 year wedding band and her engagement ring onto and wear as a necklace. She had complained for months that her rings were falling off her fingers. She wanted a chain to put them on.

The woman who waited on us at Effler’s Jewelers smiled when I told her what we wanted. I told her to think high school and a senior ring on a chain. (The memory makes me smile. Cheryl is my high school sweetheart, my prom date, where I am home.) She tried it on and pronounced it good, maybe perfect. After a week or so she determined that the clasp was a bit too tiny for her numb and shaking hands to manipulate when getting it on and off her neck. We returned and the jeweler was able to attach a larger clasp. Later she discovered that she was able to ease it up over her head without unclasping it.

She unconsciously would touch her rings and put her fingers through the rings while the chain was around her neck. It would occasionally become tangled and knotted. With another trip to the jeweler I was trained to unknot delicate gold chains. (wooden tooth picks work great) The occasional dissension broke out about wearing it to bed at night. Eventually it was carefully placed in the special box that came from the jeweler originally. The placing in the box became a nightly ritual.

As time went on she added a couple other special rings that she had in her jewelry box. For the past couple of months she has been wearing it with four rings.

In October of this year they are lost. A few days ago as we were traveling somewhere, I noticed that she was putting on a different necklace and I asked her where her ring necklace was and she said, “It’s in my pocket.” I now suspect it was not but at the time I thought nothing of it.

I know that I should not feel guilty about the disappearance of the necklace but I do. I suppose it is the care partner, the 50 years of marriage partner, the help mate, the one who panics most when she falls, the one who is not losing their memory – in me. I feel like I have let her down. I have made it my job to keep track of her stuff and mine.

Tony! Don’t be a phony. Help us out her. THE NECKLACE IS GONE.

Carpe the St. Anthony Diem.

the necklace is BACK!

Update: The necklace is back. It was recovered from the chair she is sitting on. Moral of the story – Don’t make the disease harder than it is. Sometimes stuff just falls in the crack between the cushion and the arm of a chair. (Sorry Tony. You are not a phony.)

Carpe Diem.

Parkinson Hacks

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When did the term hack get substituted for coping strategy? This is an unimportant question that jumped into my head watching the morning newsy show. The gentleman was talking about traveling and airfare and airline scheduling nuances to guarantee getting there on time and not have any trouble. He shared his ideas for traveling early on Thanksgiving day and traveling home Friday. Getting back in time to watch football for the rest of the weekend. He could have FaceTimed his family that he did not want to visit for long. It could have saved a lot of time and money. (That is a hack.)

Wouldn’t it be great to make a list of hacks for Parkinson and his damned disease? He found it. Why did he not write a manual? Even written in the flowery English of the 1800’s it may be of use today. Nevertheless if he published other than his observances to the medical community (The Shaking Palsy – An Essay), I missed it. Parkinson describes a shaking motion. Today his name is associated with a wide range of symptoms, behaviors both movement and cognitive.

In our support group meeting on of the topics posed was “Share one piece of information, a coping strategy (hack), a motivational thought you wish someone had shared with you when Parkinson disease first made an appearance.” I have several and it has taken me a long time to learn them.

Cognitive

Often but not always a person dealing with Parkinson will have cognitive issues in addition to movement issues. These can come in many forms; hallucinations, sensing others, detecting others presence, odd beliefs with little knowledge, delusions, lack of time sense, lack of calendar sense (day), short term memory loss, aphasia, to describe a few. When you detect this happening in the person whom you are helping – Don’t argue. It is very easy to fall into the trap of trying to correct things. Remember with memory loss everyday is a new day.

For me this is an ongoing learning experience. I do use argument (not quite the right term – dissension? – justification?) as a method of attaining her focus because when she is mad at me she is completely focused on what I am saying to her. Often that is when I am attempting to prevent a fall or a near fall. She wants to continue doing something that is to my mind unsatisfactory, bordering on dangerous with her worsening movement control.

I do not do this often because the side effect of having her angry with me can last until bedtime. Sleep I have found is refreshing to her in a way unlike nothing else.

Meds

As a care partner it is extremely important to control meds, medication timing and to observe any issues or effects of the meds. Is this new behavior due to her worsening Parkinson or due to the new med or aging in the old med? It involves lots of reading and observation.

Whenever a change is ordered or a new med is added, the care partner must become observer and research assistant.

Checking activities

Check, check, check on things. A task that might take ten minutes for a non-Parkinson could easily take three times as long. Allow for that when planning activities no matter how small or how large. Parkinson time is different that regular clock time. Many diversions can creep in. In fact scope creep has to be tamped down continuously. (A trip to the toilet can easily morph into putting on a whole new outfit.)

Providing Help

Interfere and help. She may not want your help. Help anyway. Apologize later for helping. Do not help before it becomes apparent that she is truly and hopelessly stuck. Mentally she might think that there is hope yet and she does not need your help. It is also possible that she will not remember you helped. Just help.

Social

Generate social activities for yourself and your partner. Go out to lunch. Go out to dinner. Visit friends and family. Take walks in the park. As much as your are able look for or create on your own opportunities to be outside and exercise. Seek out exercise venues that cater to people with movement issues. (Physical therapy is one to one. There is very little social interaction.) Specialized exercise classes are far more social.

Socializing in general stretches the brain and often requires dual activity such as eating and talking. Walking and talking in a park is an excellent form of this socialization and has a third benefit of giving the body a chance to make vitamin D. Multitasking is hard for the Parkinson brain.

Caring

You have to create a network of care. You may think you can do it alone. You cannot.

Attitude

Don’t give up. Choose to be happy. And seize the moment.

Don’t be shy – lower your expectations of people

Ask for direct help. Rarely do people when asked for help say no. Usually they say that they cannot right now. Follow up and ask when they can. This can be difficult.

Carpe Diem.

Unraveling the Mystery

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… Math, science, history. Unraveling the mystery. It all started with a big bang.

words to the opening theme song of BBT

These words from the theme song of the TV show, “Big Bang Theory” jumped into my head this morning without warning. Cheryl and used to watch this show and occasionally we still watch reruns of the old shows.

I have a little cartoon I made up where I quote from and old Joe Walsh song – “Searching for clues at the scene of the crime.” Both of these carry the same sentiment to me. It is the human search for meaning of our existence and perhaps even the search for God in our own lives.

In our case it is the search for the best day we can find on our journey.

A Facebook friend who also is dealing with a wife who has Parkinson says this. Gordy is more of a biblical scholar than I and has a different sense of God than I do. Here are his words from a couple days ago.

… Everyone – that is, EVERYONE, has a God. A god is that “supreme or ultimate reality;” that thing, entity, power, wealth, object, person, or principality (mindset) on which our life is focused, absorbs our time, energy and finances, and demands our attention and loyalty.
In the realm of the spirit – the supernatural, that “supreme or ultimate reality” is, for the Christian, the God (Yahweh) of the Hebrew-Christian faith. Another god is Allah of the Moslem faith with Mohammed as its prophet, or Buddha, or Hare Krishna, or Vishnu, or a host of other gods or goddesses of other religions in the world. These people all believe in their God and that their God is “the supreme and ultimate reality” for them.
But what about those who don’t believe in the existence of some supernatural being, but choose to believe only in the natural? If everyone does have a god, who might their god be? … As for me and my household, I choose THAT “supreme and ultimate reality.” I choose THAT God! I choose life!

— Gordy Cannon from a Facebook Post on October 15,2022

Gordy has found his God. The only thing I would add is that I think Allah is that same god just merely 800 or so more years down the road of divine philosophy and thought. I will always wonder where the Judaeo-Christian went awry and Mohammed was able to persuade folks that he had the right idea or Joseph Smith and his group or Martin Luther and his followers. (Let’s not bother with Henry VIII). Gordy makes a strong case for his search for meaning in his and his wife’s journey with Parkinson.

The other day when I read his post on Facebook I realized how important it is to find meaning in life… whatever that means to you.

Carpe Diem.

Dementia and Daily life

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No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)

Post Furniture Arrangement

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Oct 9 & 10 2022

I worry more and more about Cheryl’s odd evening behaviors. Quite often afterwards she “wants to go home”. It breaks my heart that she doesn’t know who I am in the evening. It breaks my heart that I cannot find a solution to helping her get out of those behaviors.

I think I have my own anxieties about helping her at home. I did in the Spring when she seemed to be “off on some cloud” about something in the evening. The dementia experts will tell you to confirm and acknowledge the weirdness. That can be really really hard to do. They do not use the word weirdness that is my word for it. I mentioned to my sister-in-law that I am too much of a linear thinker to simply acknowledge and acquiesce this behavior. Maybe I have too much background anxiety about what is next?

The term used for this evening behavior is sundowning(er) syndrome. The Mayo Clinic has this to say. And the National Institute for Health offers these tips to combat it.

It is great that healthcare providers and institutions recognize it as a thing and give it a name. It still gives me anxiety.

Tonight which is pizza Tuesday, it seems to be easing but whether it is or is not will not be known until an hour from now.

Carpe Diem.

It is an hour or so later and it is looking good.

4:20 AM update – 🙂 – there was a problem with the computer that drove her awake. (There was not.) It took a bit of convincing and me doing a pseudo-visit to the computer, she settled back down to sleep.

Furniture Rearranging

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It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.

I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.

She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.

Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.

Heaven’s phone bank – Hello Heaven. Gabriel speaking. How may I direct your call?

Carpe Diem.

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

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Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.

We Got There!

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When she is running on parkie time and I manage to get her to her exercise class on time without arguments, mostly none, I get a feeling of pride of accomplishment. Seek accomplishment in the small things of life and bigger things will follow. Or I think that they will.

There are lots of life plans and platitudes similar in sentiment. Keep track of the pennies and the dollars will take care of themselves- is one from the business world. Manage the little things and big things will come your way. Yadda Yadda Yadda.

She seems to be enjoying class. It consists of a group of boxing like motions while seated. A similar class uses dancing moves. The constant motions raises the heart rate.

Friday is always a bit tricky since the class that she likes is at 11 am. All other classes are at 12 pm and later. Generally her best time of day is 10 am until about 7 pm.

Carpe Diem

Part of a Study

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Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.

The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.

I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.

Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.

Carpe Diem

Parkie Time

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… is different than any other time.

I think that when I want to do something with Cheryl, parkie time shows up to slow things down. It is inevitable. She will say- let’s go or are you ready to go- or words that convey the sentiment that she is ready. Nope. That is a incorrect interpretation of the language.

If I stop to consider parkie time though it makes sense. I thought we were headed to the car. Actually we were headed to check on several stacks of paper in her office before we go. The thing about parkie time is that it has little to do with clock time.

There’s a period of hesitation while one remembers what is happening next and what is required for that activity. If I realize what is happening I can help but sometimes the help is unappreciated. It is a delicate balance of gentle help and unintentional stress. Memory loss mingles with confusion to create stress.

The important thing is to not respond to the smart-Alec comment or to make one. Running down the road jabbing at each other with pointed sticks does not accomplish much but admittedly can be momentarily satisfying to both. Resist doing that. The road is smoother. There is less apologizing later. Certainly there is less guilt at having trod all over someone’s emotions.

The disease is not them. It is hard to remember that in the rush for the door to leave and go somewhere.

Carpe Diem.