health

Not in a Long Time

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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.

Care Partner

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Recently I learned a new term. Care Partner. I use the term care giver on this blog as I write little stories about our day to day struggles. I think care partner is a better term for what we actually do. Often I care for her. Just as often she cares for me. It is not a one-sided activity. Interestingly enough I poked “care partner” into Google. I am always interested in what sort of images the great alphabet search engine will find. The very first hit on my list is this link to an article about care partner on Parkinsonsdisease.net.

Last evening we attended a gala fund raising event for PCF which is an exercise and social facility that I take Cheryl to three days a week. They had an awards ceremony and passed out what engineers call attaboys. It is nice to be recognized for work and effort for which there is no expectation of reward or recognition.

I was given a “Care Partner ” award. I thought– absolutely, yes. It is better description of what happens. There is no doubt in my mind that Cheryl cares for me as much as I do for her.

Hmmm.

Carpe Diem

Best Descriptors for Insomnia

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Ironical

  • Peaceful as a truck driver on amphetamines
  • Restful as an old man with the bladder storage capacity of a peanut
  • Satisfying as a rock star on speed
  • Quiet as Michael Jackson after practice for a concert
  • As restful as an hour after sixty-four ounces of colonoscopy prep
  • Rejuvenating. Much like being chased by a mother bear after you’ve noticed her cub behind you on the Appalachian trail.
  • Adrenalin rush leads to melatonin misfire

Last night was a particularly unsatisfactory overnight experience. It seemed as though Cheryl did not sleep at all nor did I. I tried a new idea out on myself. Instead of becoming angry with her disease, her insomnia and myself for getting angry I laid alongside of her thinking of funny ironical and satirical ways to describe insomnia. It is hard to be creative at 2AM. I kept falling asleep. When I awakened again, perhaps an hour later, feeling a little guilty for falling asleep, I was worried that today would be especially bad.

Yesterday we had dinner with my cousin and his wife visiting from the west coast. It was a pleasant afternoon and evening full of catching up and conversation. Cheryl seemed to enjoy it even though her evening meds attacked her and she sought refuge on a couch in the back office of my cousin-in-law’s condo. I think that embarrassed her even though we assured her that she should not be.

On the way home she expressed how much she enjoyed herself. When we got home she hunted for comfy clothes and we watched a favorite show together. She went to bed at her normal time around 10PM and I sat up to read for awhile. When I went to bed later she was still awake but that is not unusual. She is often awake for a bit after she lays down. Sometimes it is a long bit. Last night it seemed to be all night.

Early this morning she told me that the kids needed breakfast. I think I raised my voice when I told her that there were no kids living with us but she had left the bedroom. I am sticking with that excuse.

Someone said that you can sleep when you are dead. What a morbid thought that is. So, I began my thought experiment. Some of them I remembered this morning.

Haiku: Adrenalin rush; Sleep is disturbingly sad; Melatonin fail. 🙂

Perhaps I will get my sonnet maker out and think about that for awhile. Or I could read a book and nap later today.

Carpe diem or carpe nox. Carpe whatever you want.

Frustration and Anger

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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

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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.

9/12/2021 — Sunflower Day

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Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.

It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.

Special thanks to Texas for helping out today.

Carpe Diem.

Emotion is often Close to the Surface

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Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.

Dear Ally,

Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?

As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.

Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.

I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦

With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂

If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.

Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.

We wish you well in your new life. Keep in touch and stay safe.

Best Regards and Godspeed,

Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.

Carpe Diem.

A Severe Bout of Hallucinations

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I started this commentary about ten days ago but it is a recurring theme. It has made night time sleeping a bit tenuous. But as I think back about the problems she was suffering through I am heartened by the fact that this was before her visit with the neurology folks. And comparing then to now I see a bit of change with her new medication.

Looking back — Cheryl sees little girls in our house. She associates them with various nieces and grandchildren when they were younger. Perhaps these apparitions are in the four, five and six year old range. Janel as a small child she has reported to me is in her office. Sometimes she is with Virginia and Laurencia as young children if there is a group of kids.

Sometimes the kiddos have a woman who keeps track of them. Over the past few days I have come to realize that the woman who keeps track of them is Cheryl. Listening to how she talks about the woman made me understand that she is talking about herself as though she was standing outside of herself and looking back.

Hallucinations are more common than one would think as this old article points out. I have expended a great deal of time researching auditory and visual hallucinations. Brain chemistry is fascinating and a seriously deep rabbit hole to fall into. Hallucination is merely altered chemistry of which we know surprisingly much and little.

Carpe Diem.

Do You Have Sons?

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It was an totally off the wall question from her as we finished up the waffles I made for breakfast.  (I have finally succeeded at chocolate chip waffles without screwing up the waffle iron.)  She looked at me sincerely with a forkful of waffle and asked me, do you have sons?  I replied, yes we have two sons.  We have two sons?, she repeated.  Do you know who I am?, I asked her.  No I am not sure, she said.

This morning she is not sure who I am.  She accepts the fact that I am here with her.  She does not question why.  I am at a loss for words and ideas as to how to return her to now.

This morning she is not sure where she is either.  This inability to understand where she lives usually aligns with her inability to know who I am.  It seems to present after a night of poor sleep.  Early this morning she awakened at 1:30 AM or so and became anxious about having something to eat and taking her pills.  She was certain I was keeping her medication from her no matter how many times I explained that it was too early.

Where are we going to church?  After a few minutes of conversation about sons  and their ages, she asked me this question.  I replied that we would be going to Nativity at about 4PM this afternoon which led to a discussion about what day this is and what is going on tomorrow.   I thought she was back.

And then she asked me, is your wife going?  I did not immediately respond and she asked will you introduce me?  This group does not talk much about family.  I would like to know more about this family.  (smiley face)  I thought to myself, this could be a long day of confusion.

As I write this I am listening to her talk to my brother-in-law in Florida.  Cheryl inadvertently dialed him while looking at other stuff on her phone.  She stopped the call but Bill called back to ask if something was wrong.  There was but he was not able to tell from his far away position in Florida.  They chatted for awhile and I thought she was slowly coming back to reality.  Alas, she was not.  After she terminated the connection she asked me where was this place we had spent the day.  This is where we live, I told her.  This is our home.

Confusion about going to church and time to be up seems a common theme of the overnight early morning discussions.  This morning after the discussion about medication schedule and when the next dose was due she reported that she had a queasy stomach.  She wanted something to eat. I got her some cereal and orange juice.  As she spied the pills for 7AM the conversation returned to – I should be taking medicine now. She can be remarkably confrontational and difficult in her early morning confusion. I moved the meds to my office. She ate a little cereal and juice. She eventually announced that she could eat no more cereal.

We sat down in living room for a while and I coaxed her back to bed. Queasy stomach was still part of the conversation. She gobbled a couple Tums. She was unable to sleep without her bucket. She curled up with her bucket angry with me and eventually fell asleep. So did I. I have no doubt that her stomach was queasy although that was a new description.

On our visit to the neurology group did produce a new prescription to help with memory issues which relates to cognition and a whole host of other issues that tumble down from that. The new thing is Rivastigmine which is supposed to help. So far after half dozen doses, the jury is still out. I have been meticulous at making sure that she eats food when she takes this medicine. It can cause nausea.

She is anxious about fund raising for the Sunflower Revolution. She very much wants to raise more money than last year. Even as I explain that she does not have to provide the money, she worries that the word will not get out. My daughter and I have taken over the marketing of this for her.

Carpe Diem this has been a long day.

Sweet, Fruity and Well Balanced

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That is written on the front of my often bought bag of Eight O’clock coffee. I thought a good life philosophy.

Overnight was a hard one. Cheryl has been having a rough time sleeping at night. She has the normal seventeen trips to the bathroom overnight that occurs with any older person. Her Parkinsonism intensifies this experience.

The past few nights I have trained myself to get up with her. I have tried to get my system on her schedule. We started this because a few nights ago she awoke in a panic. She worries about incontinence. In her dreamy wake up at one o’clock in the morning, she was certain it had happened. She awakened me and I helped her to get cleaned up and new pajamas and other anti-leak equipment. (The pajamas she wore to bed were fine as were the other things but in the early morning dreamy state it is not important to argue.)

Since that experience I have awakened with her to guide her and help. I have to admit I am cranky pants in the early morning hours. It is sometimes difficult to get her interested in going back to bed. I have taken to hiding her medications occasionally because she has taken them in the middle of the night. I am uncertain that I will wake up with her and I worry that she will over medicate and inadvertently harm herself.

Last night and early morning was particularly bothersome. We got through it. I let her sleep a little later than normal before I gave her the mornings meds. She and I came to bed afterwards and slept a little longer.

Today she is very tired. She told me this earlier after her second dose of meds for the day. I told her I was not surprised at that as she had not slept well the night before. She replied that she did not remember. It seems unimportant to discuss overnight difficulties with someone who has no memory of events. I dressed the bed and helped her to lay down for a late morning nap.

Maintaining sweetness, a fruitful and well balanced life as a caregiver to a person with a chronic affliction can be hard. I have no mystical, magic or wise solutions to the stuff that pops up. Meditation does help to calm the caregiver.

Meditations (From Davis Phinney website)

[1] The first one-minute meditation involves counting your breath cycles. You count every exhalation from 1 to 10. Once you reach 10, you can go back down to 1 and continue the cycle as long as you’d like. In the audio recording, with my breath cycle, I only counted from 1 to 10 once in the 1-minute meditation.

[2] The second one-minute meditation is also a breath counting meditation. You count at the beginning of every breath cycle before each inhalation. We count cycles of 10 breaths. Once you complete 10 cycles, you go back to one and continue the cycle.

[3] In the third one-minute meditation, we take a breath before we begin to notice where we feel the breath most acutely. It may be at the tip of the nose, in our chests, in our bellies, or somewhere else. For the entire minute, you focus on the region of the body you feel most throughout each breath cycle.

[4] In the fourth one-minute meditation, we follow the entire breath cycle with our full awareness. We follow the breath from the first area we notice it (for me it is the tip of the nose) until it expands our chest and bellies, we pay attention to the way it feels when our lungs are full of air, and then we follow our full exhalation. We continue to be present with our breath and bring full awareness to the sensations of inhalation and exhalation for the entire minute.

[5] The longest guided meditation is a five-minute body scan. Body scans often range from 15 minutes to 45 minutes; however, similarly to the breathing meditations, I wanted to make this a shorter introduction to the experience to see what feels right for you. We scan from the feet to the top of the head, breathing as we bring awareness to each new area of the body.

This small list of meditations help with calm. They work for me sometimes to help me relax.

Carpe Diem