Random Thoughts

EEEEke, Get Outta Here!

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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.

Donut Day

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It was going to be doughnut day and I forgot. Alas. Woe is me.

Going down this sometimes bumpy, sometimes smooth road of Parkinson, I hunt for ways to make memories. Happy memories. You have to see how Cheryl’s face lights up when there are doughnuts for breakfast. You will know then why getting up early to go find doughnuts is a special memory. Cheerios will not go nearly as far to creation of happiness.

Skeptics will report that doughnuts are not good food. Some will even report that doughnuts are bad for you. Others will discuss yogurt and oat bran and report their studied benefits to those I say malarkey, nonsense and bovine feces. Nothing, absolutely nothing compares to a lightly textured butter enhanced wheat dough gently lofted by yeast plants straining for full growth finished in deep oil at the proper temperature and upon proper cooling, coated with a just-right glaze of sugary vanilla. (I know you can taste it. That is because I am eating one while writing. Darn, sugar on the keyboard.)

I offer only condolences to those with celiac disease. Gluten free donuts are a sad replacement. I offer condolences to those who are lactose intolerant also for they are doomed to enjoy margarine and vegetable oil.

Nevertheless as we returned home from our dinner at a diner and a walk around the park last night, Cheryl expressed an interest in having doughnuts for breakfast. I agreed but at 8 PM those are hard to find and when you do there is little selection. I said I would get up early and go find some. Alas, this morning that thought had not remained with me overnight.

Cheryl got up a little after 8 with no help from me. I heard her stirring in the bathroom and went to be an annoying helicopter care partner. All was well. I asked her what she wanted for breakfast to which she replied, doughnuts! I was initially crestfallen as I had forgotten our discussion. I put on clothing and went to our local IGA to see what was still available in their Busken Bakery cabinet. Fortunately for me the selection still contained kettle danish which is a favorite of hers. I will eat any combination of sugar and wheat dough. No favorites for me, although, my grandson once brought me a maple iced long john which a strip of bacon on top. Yummy. (When you are in Chicago next time find some “fried dough” — fattening but exquisite.)

The day was saved. The crisis was averted. Dip-able things appeared next to my coffee. Perhaps I will make a new pot.

Carpe Diem.

The Road of Caring for Another

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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.

Last Night She Slept

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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.

Last Night was Peaceful

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Last night was the first dose of donepezil which may help with Cheryl’s confusion and dementia issues. It has two main side benefits (effects) in addition to the myriad of others that seem related to any drug regimen. The side effect I am most concerned with is insomnia. I will be watching for this closely over the next few nights as her body adapts to the medication. The drug literature suggests a two week or so adaptation period. I am hopeful today.

The dose in this series of pills is 5 mg. The intent is to discover the patient’s tolerance for it. The dose will be increased over time. If one eats a little bit of peanut butter each day when one is little, one will not develop an allergic reaction to peanuts. If you eat a little bit of dirt each day as a child you will develop a tolerance for a lot of things later in life but your parents will go through a really annoying diaper period.

Nevertheless last night was peaceful. One trip to the waterproof room and no extra laundry in the morning. Seven AM meds consumed on schedule. Breakfast of yogurt and Pillsbury refrigerator rolls rounded out the morning.

Exiting “news” today from the world’s largest advertising company Meta formerly know as Facebook, new tools are available for Instagram whatever that may be. (I am old.) All the major stock market indexes plunged (not fell) into bear market territory. The Fed is wondering out loud about where to set interest rates. Nervous investors are placing their bets. Bitcoin aficionados are moving their money so quickly the major exchange called a halt. (Think of all those computers mining bitcoin settling into stasis.) Ho hum. And it is going to be hot today on the east coast where all the news comes from. Stay hydrated!

Another day begins. Cheryl seems to be moving well. She can try out our new grab bar that was installed yesterday on the wall near the shower to help with getting in and out of the shower. I have no control over the things that CBS has decided is news today, so, although I am mildly interested, I do not spend much time on it. Cheryl is quietly watching the news after eating her Pillsbury refrigerator rolls and yogurt with OJ.

The Wordle today was easy. I got it on the first guess. Today life is good.

Carpe Diem.

How Many Things Change

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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.

Unsolicited Advice

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Oftentimes my immediate reaction to unsolicited advice is to ignore it because I assume that the advisor has their heart in the right place. Pushy people can insist that I’m doing it wrong but it is possible to listen past this and hunt for the useful nuggets of information.

Today Jane apologized for jumping up to find Cheryl a different cup to put her soft drink into at the pizza store last Tuesday. It was both unsolicited and surprising. I ignored it and when she came back with a coffee mug I poured part of Cheryl’s drink into it. It was a good solution and Jane’s apology and later her admonishment when I said that it was unnecessary reminded me that I am not the only solver of problems. Jane’s background is special education with kids that have special needs and although Cheryl is not on of those, some of the same rules apply.

For quite some time now I have been merely moving Cheryl’s giant plastic glass of soft drink away from any gyrations that occur with her hands as she engages in conversation. It never occurred to me to merely request a smaller additional glass to put her coke in. Something that was easier to deal with. AHA (dammit I missed that one.)

Carpe Diem.

The Caregiver Helpbook (3rd Edition)

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Subtitled: Powerful Tools for Caregivers

So what can the Care Partner of The Year 2021 do with all of this wonderful knowledge? In an inadvertent fluke of fate and its fickle finger Patty send me an email with the information about a Caregiver’s Class put on by Catholic Charities of Southwestern Ohio. I am all for being as educated as I can about how to take care of Cheryl better by taking care of myself.

Being an engineer and amateur scientist I thirst for knowledge. That is corny but true. The problem with that statement overall is that there is no complete solution to Parkinson’s with dementia added. There is not even a partial solution. Cheryl’s sister hopes for a cure. I do not hold that same hope. That being said, the situation is not hopeless. 

I bought a book called “Dementia Reimagined”. I was hoping for a cookbook style answer manual. It was not that at all. It is an incredibly tiring tome about public policy and where it fell into the dumper over the years. Engineers are always hoping for a cookbook for their situation. When this happens, do this. Alas there is no such manual for life situations as defeating as PD with dementia.

But back to the help-book, It seems as though many of the ideas I have discovered on my own or others have told me about I merely have been ignoring them. Early in the book it talks about developing goals and achieving them. These are not care-giving goals. These are goals that allow the care-giver some relief.

Initial focus is on setting a goal or several goals and development of a plan to achieve it or them. The goals discussed are relaxing activities for the care giver. So, it is something you want to do. It is also something that is reachable and realistic. Something you can accomplish in the near term.

  • What do you want to do?
  • How much of it do you want to do? (more specifics)
  • When do you want to do it? (timing helps to plan)
  • How often do you want to do it? (repetitive relaxing activity)

This same technique can be used to plan any sort of activity, of course, but the book’s focus is care partnering and care partner health. Additionally this portion of the text asks the maker of promises and planning to predict the probability of achieving your activity. There’s an implied deep need here. Something that you may really feel like you want to do but have little chance of achieving. A life lesson in the manner of understanding that not all wants are achievable. (How driven are you to get to your goals)

The next portion of the focuses effective communication and recognizing emotional and stressful situations. Two forms of communication discussed are assertive and aikido. A comparison of these styles of communication is Assertive:”stand tall” vs. Aikido:”standing with” This portion of the book takes me back to my educational psychology classes and discussions about defusing confrontational situations.

  • ASSERTIVE
  • setting limits
  • asking for help
  • advocating for another
  • making difficult decisions
  • dealing with difficult styles of communication
  • AIKIDO
  • defuse emotional situations
  • help others feel understood
  • reduce anger
  • balance emotions to allow dealing with others

As I go through the rest of the book I will report anything else of interest to me.

Carpe Diem

Complaints

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Today it occurred to me as I cleaned the Kleenex lint from the washer and dryer for the nth time, it was doing no good for me to lodge a complaint with Cheryl about putting tissues in her pocket. It also occurred to me that although I beat myself up about missing the tissues in her pocket, I will probably often miss one once in awhile.

Dementia is not a specific disease but is rather a general term for the impaired ability to remember, think, or make decisions that interferes with doing everyday activities. Alzheimer’s disease is the most common type of dementia. Though dementia mostly affects older adults, it is not a part of normal aging. (from the CDC)

Drat and alas. Drat, she cannot remember to do it. She cannot remember my complaint either but will detect the disappointment in my voice and probably interpret it as anger. And alas, I will occasionally forget to look in all the pockets.

I will forgo the complaint process. It is not useful anyway. I merely causes us to pick at each other. (Forgo was the answer to the Wordle a couple days ago.)

Carpe tissue Diem.

Fast

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There is absolutely nothing that goes fast in our life anymore. Do I miss it? My immediate reaction is NOT.

Max throwing his fast ball

I like how the young people emphasize comments by using ALL CAPS. That enables their fast comments about most anything that strikes them.

FAST however is gone from our life with Parkinson. Planning and thoughtfulness and SLOW are the current buzz words in our life.

I have noticed as I get older (I am Old) and drive my wife with PD to various exercise or other social activities that many drivers – not necessarily young drivers – move through traffic fast. What is their hurry?

Even when I am feeling as though I am late for something, I ponder what will be the result if I am later than I expected to the destination – mass, restaurant, exercise, whatever. The end result is similar to removing one’s arm from a bucket of water.

Nothing. Maybe a couple drips on the floor.

Carpe Diem – FAST