A Never Ending Search

In my never ending search for a good day for Cheryl, this morning I went to a little donut shop near us and bought a dozen from Maggie. I had not purchased donuts from Maggie for some time.

Linda was coming over today to sit with Cheryl. I was intending to ride my bike around Lunken and the Ohio river trail. I asked Linda what kind of donuts she liked last night. The chocolate iced ones are hers. I sent this picture to her in a text this morning. She appeared early.

The donuts were only hours old. Ron makes them overnight.

Donuts used to be $11 a dozen with coffee. Today they were $14 a dozen without coffee. That is twenty-seven per cent more for you math weenies out there. It might be more considering the coffee. Inflationary pressure has finally come to donuts. Gasoline prices are down. Donuts are up. Darn.

I went to ride my bike. When I had returned Natalie was almost finished cleaning our little condo.

I made chicken Parmesan for dinner. We went to a little ice cream shop for dessert.

It was another good day.

Carpe Diem.

Organizational Techniques

Posted by AdjunctWizard

This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

It Seems Counter-intuitive

Posted by AdjunctWizard

Cheryl has some dementia which is a nuisance with her decision making process. Any attempt at speeding her up doesn’t seem to work well. She merely gets angry and frustrated with her husband. And it is hard for her husband to not speed her up. That must be fifty-two years of helping getting in the way of care partnership. (Smiley Face)

This morning I tried to move her along without being pushy. Yes, I can be and have been pushy.

She wakened several times overnight to go to the toilet. I got up to help her once. So, when the seven am medication alarm went off, she ignored it. I got up to remove that annoyance from my ears and get her first dose of stuff for the day. When I returned her snoring indicated disinterest in arising for the day.

I laid back down to see if she would stir again. When I awakened it was eight am. I must have been tired also.

Eventually I left the bedroom to make coffee, get the papers and turn on the news to discover which part of California is on fire. An hour or so later I kissed her awake and she asked me when church started. I told her that she had exercise class at noon. I left to drink more coffee and to listen to the interesting fact that no toilets could be flushed in Mississippi. I returned for another gentle nudge and she got up.

I suggested scrambled eggs and toast for breakfast and she readily agreed. I continued with gentle nudges and quit concerning myself with whether she would be late for her class. She was not late.

The exercise classes she takes at Parkinson Community Fitness are a benefit to her so I make every attempt to get there on time but today I tried a not pushy technique. I call today’s strategy “bump and run.” I would engage her and nudge her thoughts and then leave. I came back a few minutes later for another bump and run. It worked and neither of us was upset when we left.

Today’s class was led by Paige and Jenna. Jenna’s notes are here. The rowing person is excited to do the exercise.

Carpe Diem.

More Things that I Have Learned

Posted by AdjunctWizard

If you are going to try to get your PwP to speed up to go somewhere make sure you have your act together first.
What ever schedule that you have in mind is busted, so, move on.
Some people sleep in occasionally. It is not apathy, just the ordinary need for luxurious life.
“Church” is merely another name for going somewhere. Just repeat the answer to: Where?
Do not panic when she asks where we are sleeping or asks if we are going home tomorrow. Tomorrow she will not remember.
Read her email once a day.
Casually look in her disorganized office once in awhile to get a feel for where things could be when “I can’t find my…” comes up.

This is a continuing list and when I stop to think about it and all the things I have had to learn and do it makes me smile. Frustration creeps in sometimes but I think that most of the time I can push it away. The times that I cannot are about what this disease has taken from her.

Distracted Morning

Posted by AdjunctWizard

Sometimes when I am distracted in the morning and helping Cheryl along to her next task I poke around on the the internet of all knowledge and little information (aka world wide wait, world wide waste, wordle word wrestle, etc.). Google is helpful with amusing little short articles to pique your interest and use up a few minutes of your day. I tripped over this:

The Simple Trick For Removing Stuck Labels From Glassware – BY AUTUMN SWIERS/AUG. 18, 2022 2:22 PM EDT

Maybe you’ve heard recent rumors that Mason jars are the new, unofficial beverage holders of hipsters. Even CBS News says, ‘to be truly hipster, one must drink from a used Mason jar. It doesn’t count if you bought one in a store. It had to be used for another purpose, like for blueberry jam, pickles, or canned peaches. (CBS made the statement when a Chicago 7-Eleven began selling slurpees out of Mason jars, calling the move a “Hipster Apocalypse.” HuffPost expressed a similar sentiment.) A recent survey by the International Food Information Council, via Food Insight, found that younger generations care more about sustainability — and a hipster is “usually [a] young person’ It’s fitting, then, that recycling your used Mason jars, and other glassware, is an easy way to make an environmental difference. You can reuse that old jam jar to sip cold brew out of, to keep food fresh, to plant flowers in, or for storing buttons. But, maybe you simply don’t want the glass jar you’re using to hold those cute cozy overnight oats to have a big “Pepperoncini” label across the front.

Luckily, there’s a simple trick for removing stuck labels from glassware. Whip out the baking soda

To remove a stuck label from your glassware, craft supplies purveyor Avery suggests scrubbing the label off with acetone nail polish remover, rubbing alcohol, lighter fluid, or cheap vodka. Let the label soak face-down in the solution of your choice for 15 minutes, then scrub away with a sponge. Frugal Minimalist Kitchen recommends employing the help of a scraper. But, if chemicals and tools aren’t really your thing, there’s another method.

Simply submerge the glassware in a pot of warm water, add a little dish soap or baking soda, and let it soak, says The Kitchen. You can heat the pot directly on the stove. The labels, it says, should come off on their own, but spot-scrubbing with baking soda will take care of any stubborn residue. To safely remove the hot glassware from the pot, use tongs and transfer them to a dish towel to cool. (If you’re all out of baking soda, Aim Plastic Free says white vinegar works, too.)

Sustainably Kind recommends a similar technique, but with a slight variation. If you’d rather bypass the hassle of putting a pot on the stove, it says, you can simply fill those jars or other glassware with boiling water from a tea kettle. Let the water heat the jar for 3-5 minutes; This will soften the adhesive that holds the label on, and you should be able to easily remove it while the hot water is still in the jar.

Next up — HERE’S THE TRICK TO COOKING THE TASTIEST BACON ON THE PLANET — could it be fry it in a skillet?

I had to laugh at myself for spending a couple minutes reading all these words that can be summed up as wash it. I am not a hipster. Maybe hipsters do not understand washing, after all, they have apparently only recently discovered glass. (Who was Mason, anyway?) I am glad, however, that the kids have rediscovered glass. We used to drink beer from glass jars when I was in college… in 1970-ish.

Cheryl has had breakfast. Shortly we will go to her last physical therapy appointment and decide what happens next. She slept a little later this morning but she seems rested and relaxed.

Carpe Diem.

The Art of Marriage and Care Partnering

Posted by AdjunctWizard

An empathetic and caring atmosphere for your partner with Parkinson and dementia, like a good marriage, must be created. In the art of marriage the little things are the big things. The same is true for care partnering. Small things are meaningful to both.

It is never being too old to hold hands. Physical touch is a comfort. Holding hands and helping someone you love up a step or into the car or into a chair at the restaurant is a sign of love. Doing those things without complaint and without request is a sign of grace. Look for grace in your life.

Remembering to say, “I love you” at least once each day to a spouse who is also graced with a chronic disease is reassuring. She did not ask for this disease. Reassure her that she is not an annoyance to you by saying this often. As a care partner there will be times when you do not feel that way in that moment, breathe deep and remember how it was and use those thoughts to see her as she is now.

Never go to sleep angry. Anger is available every day. It has no place in the bedroom at night. (This may be the hardest lesson to learn.) Just remember that everything seems worse at night. Sleep later into the morning hours. There is always light after the darkness.

Discussing and having a mutual sense of values and common objectives that are important to the partner who is burdened with Parkinson is essential for helping her to manage the disease. Occasionally anxiety creeps into my thoughts and voice. When that happens I become a naggy care pusher and not a helpful encouraging care partner. If you can, resist becoming a naggy care pusher.

We are standing together facing the world. This is a joint effort. (A platitude – many hands make for light work.) Care partnering is forming a circle of love that gathers in the whole family. It gathers in your circle of friends. It affects the person with Parkinson directly both physically and sometimes mentally. Parkinson is a change. Parkinson is not a purgatory.

Care partnering is speaking words of appreciation and demonstrating gratitude in thoughtful ways. These words are exchanged in both directions. These words are not expected. These words are freely given.

Care-giving has the capacity to forgive and forget. Give each other an atmosphere in which each can grow. Share your thoughts and ideas with each other.

Find room for the things of the spirit. And when the spirit moves, search for the good and the beautiful. Keep on the lookout for those “Aha” moments to learn from.

As it is with marriage, care-giving is not only partnering with the right helpmate. It is being the right partner. Parkinson’s sucks is the phrase Michael J. Fox uses. By helping each other PD sucks less.

Carpe Diem.

EEEEke, Get Outta Here!

Posted by AdjunctWizard

House centipedes occasionally wander into the house. This morning one went to its demise after scouting for prey in our kitchen. If you read the link to family handyman at the beginning it tells you that you probably should not kill them. Cheryl did not read that article.

Watching that activity, I thought about it from the bug’s point of view…

bug – “doddy-oat doe” Humming to itself. This looks like a good place to hunt as it moves into lighted part of the kitchen floor.

Cheryl – “Eeeeke! Get outta here you!” Lot’s of thumps and bumps while she tries to get up.

bug – “Holy cow there must be some kinda earthquake going on.”, it thinks. It freezes to check its surroundings.

Paul – “What’s happening in there?”

Cheryl – “There’s one of those thousand leggers.” As I come into the kitchen she says, “There it is!”, pointing to the insect hiding under the base cabinet front. I grabbed the fly swatter hanging on the pantry door and handed it to her as Mr. Centipede scampered out of harm’s way under the refrigerator.

Paul – “Here use this it will work better.”

The centipede stayed under the fridge for a few minutes searching for prey and weighing options for escape. Soon the cry erupted, “There you are!” WHACK. WHACK WHACK.

bug – “Damn. Crazy woman. What is up with you? I’m outta here.” It retreated back under the fridge and Cheryl shoved the fly swatter under the front of the refrigerator in an effort to chase the bug out from underneath. It reappeared to the left when Cheryl was probing to the right. She whacked at it some more as it attempted to scurry away.

bug – ” Ow, ow ow. OUCH. That hurts. Why are y…” Centipedes are delicate creatures and tend to disintegrate with a direct hit. This one did just that.

Gone to centipede heaven as dust.

Cheryl – “Got it!”

There is a rule in our house. No bug of any type may live there. No benefit may ameliorate the absoluteness of none.

I laugh now. It is entertaining to watch. I used to worry because of Cheryl’s balance issues. I worried that she would fall down chasing a bug across the floor. And then I realized that often her Parkinson disappeared for a bit. The necessity to cause death to all bugs overrode any Parkinson. In fact she is pretty good at mashing ants with the tip of her cane or the tip of a walker leg. The only thing that needs improvement is her reaction time.

Bug whacking is also pretty good exercise. She will come right out of the chair to bush whack a bug.

Carpe Diem.

It is August

Posted by AdjunctWizard

Cheryl asked me – When is Thanksgiving? I told her the last week in November. We moved from there to me explaining it was still four months away. We were on the way to two appointments yesterday. It was earlier than I would typically schedule anything for Cheryl but in a weak moment on the phone with a scheduler who was trying to consolidate trips, I gave in.

Today she is part of a research study. The MOCA assessment is part of the study. There are many other instruments used. Some of these are poorly designed but in a way that is part of the assessment overall.

Physical assessment involves weak side motion testing. Resting tremors in different positions. The neurologist researcher wanted to test her walking but she was unable to do that unaided. After all of this Cheryl donated a blood sample and a urine sample.

We went from there to a scheduled visit with the nurse practitioner who works with her movement specialist. Maureen says that physically Cheryl assesses the same as when she last saw her in January.

She complained of tiredness afterward so we went home instead of to lunch somewhere. Cheryl thanked me for taking her to all her appointments and making sure she did not miss any.

Carpe stabilized Diem.

She lied to the Therapist

Posted by AdjunctWizard

But did she lie on purpose or did she merely confuse real actions with thinking about them? Dementia and memory issues interfere with answering simple questions.

The physical therapist asked her about doing the same exercises at home when she was not seeing the therapist. Oh yes she replied, ” Every day.” This was probably an hour after her meds and she moves pretty well. Talking to her is much like a regular conversation. The mistruth just rolled off her tongue. In her head, she had done the exercises.

For a statement to be a lie it must have the added ingredient of intent. One must intend to mislead. Cheryl has no such intent. Her intent was to please. Eventually with my urging she will practice some of the exercises.

Switching from a siting position to a standing position is a struggle for her. At physical therapy Morgan and Stephanie practice this with her. She struggles to remember the sequence of small moves. We will keep practicing at home. I wonder if she will eventually will forget how to feed herself. I wonder if her body will no longer sense hunger.

Cheryl has lots of stories. Many of these stories are embellished memories. We all have some of these. Many of these stories are explanations of motive. Many of these stories are to please the listener. None of the stories are intentional lies.

Scooch forward in the chair, Heels behind your knees, Lean forward from your waist (nose over toes), push off the chair with your hands, straighten your legs — grab the walker on the way up. Practice.

Carpe Diem.

The Road of Caring for Another

Posted by AdjunctWizard

A couple of months ago I seriously doubted my ability to care for Cheryl on a long term basis and looked into memory care facilities around where we live. There are a lot of them.

Now, after having clicked on the wrong thing on the internet of all knowledge, I am deluged with calls from the marketing folks of all the facilities within a twenty mile radius. The world wide social media network – Facebook (aka Meta) – sends me two types of ads on every other post on my “news feed” advertisements about Parkinson stuff and memory care places.

I suppose I should be smarter about see more when I see it dimly printed at the end of some paragraph I started reading. I suppose I should be smarter about a lot of things but sometimes you want to just see more of the text. Sometimes you merely want to have one question answered up front, “how much?” Used car guys know enough to not answer that question directly. The trick is to keep ’em on the lot and find the lowest possible number where the client says, “I can do that.” It is the whole reason for, “For 50 cents a day, you can feed this orphan in some obscure country.” – ads on television early in the morning. The Shriner’s hospital ads are especially compelling. (Oops, I have digressed.)

I fell for it and probably always will.

On the heels of making that mistake, I did sign myself up for a care giving (care partnering) class that also produced a fount of valuable information without the “scam likely” phone calls coming to my cellphone while driving somewhere.

The class itself has given me new insight into how important it is for me to seek out help from others around me, take time for myself to do the things that I enjoy doing, and to give those things and myself priority in my (and our) life. I have at the same time become aware of not dumping on friends and family to “take care of Cheryl” for me. Most of the time in the daylight Cheryl can take care of herself.

I do not have Parkinson disease but Cheryl does. In order for me to stay healthy enough to care for her, I have to stay healthy both physically and emotionally. I thought to write mentally also but emotionally covers it. I use the term anger but that to me means -frustration, disappointment, anxiety, sadness mixed with a little collegiality and a lot of empathy and love. And maybe a little grief is there too.

I have written this before I truly hate this affliction and what it has taken from her but I have to be as upbeat as I can about things. Some days that is harder than others.

Carpe Diem.