More Things I have Learned

After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.

An August Evening

Rainy days in August have produced sundowner’s confusion and dementia. On this particular day it seems a bit worse.

Cheryl has had a particularly busy week. Two physical therapy visits and an exercise class happened this week. On Monday evening our HOA board had a meeting to discuss maintenance schedules and what new projects we could take on with the money on hand. Jane came across the hall and sat with Cheryl on our back porch while I attended. (Jane is a wonderful neighbor.)

On anything goes pizza Tuesday we had dinner with our neighbor Jane as usual and in addition our new upstairs neighbor Joe joined us. Joe moved into the front condo over the garage spaces. Much of getting to know you conversation happened. Cheryl knew of a woman which she attended high school with who had the same last name. Her name was Kathy. As it turned out she was Joe’s younger sister. Jane’s husband used to play in several bands when he was still alive many years ago and Joe’s last name was familiar to her also. As the story developed it became apparent that her husband John had played in a band with Joe’s father.

It was a great getting-to-know-the-neighbor conversation. There were lots of memories for Joe and from Jane and Cheryl. When we got home Cheryl was exhausted.

Wednesday, I had arranged for my cousin-in-law, Linda, to come and take Cheryl to her physical therapy appointment. I went to visit the lab of a local community college program that I am still involved with. That facility is twenty minutes or so down the highway and I was gone for about two hours. We later met back up in a local diner for lunch.

Thursday it was my intention to attend a exercise-for-care-partners class at Parkinson Community Fitness after Cheryl’s twelve pm exercise class. I had previously arranged for my daughter to pick up her mom so that Cheryl would not have to stay. I found out my class was canceled at the last minute so when Anna showed up we all went to lunch. Our grandson Max was with his mom and he showed off his new laptop he purchased for college. He will start in a couple weeks.

I had hoped to ride my bike for a bit so Anna and Max remained with Cheryl. Alas, the weather did not cooperate. As I entered our condo Anna was helping her mom sort coins. These had been residing on the dining room table for several days but the project was several weeks old. Cheryl found them back in her office a few days ago. Cheryl told her daughter that when they were finished they would give the coins to her dad. She used to help her dad roll coins from his gas station business many years ago.

Max was frustrated with his new laptop. The camera no longer worked. What ensued afterward was a chat via the internet with some Microsoft expert and ultimately a complete reload of the operating system. That seemed extreme to me but I am an old retired electrical guy whose been fooling around with systems, software and computers for fifty years or so. We are living in a new age now. Ultimately it was discovered that Lenovo had placed a privacy slider to cover the camera on the upper edge of the case. It was a mechanical failure or an operational one depending on who is characterizing the action.

On Friday I was still hoping to ride my bike and the weather was still not cooperating. Cindy came anyway And I went to get a haircut and run a few other errands. I returned about an hour later.

This whole week was generally gray and overcast. It was not gloomy like the wintertime but gray and rainy nevertheless. It is still rainy and poopy outside as I write this.

The rest of the day was filled with visions and stories of her family. She was looking for Scott. Later in the evening she told me a story about Easter eggs, coloring them and Mavis. She eventually called our daughter-in-law Mavis to ask about what her objection was to coloring Easter eggs.

Earlier in the evening she asked, “Where is Ken?” I told her that Ken was probably home but I was not sure. She should call him and talk to him. She did not take that suggestion.

It was a frustrating afternoon and evening for me. Later I realized after she had exhausted herself with a very busy sundowner episode that for the first time this week only I was here with her and she could relax and let all that out.

As she laid in the bed she asked me to make sure the kids all got home okay. This morning she slept until 10 am.

Carpe Diem.

A Different Reality

Where is this?

Cheryl awakens in a different place each day.  She thinks that multiple people bring her morning meds to her.  She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.

It takes a bit of time and a bit of routine for her to get a grip  on reality.  I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.

It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.

Pick yourself up, dust yourself off and carry on.

I can’t find my…

Parkie Reasoning

Both of these control where things are placed by people who do not have Parkinson’s Disease (normies). Both of these control where things are placed by people who do have Parkinson’s Disease (parkies).

Is there an easy caregiver solution to the frantic search for …( name item here)? Nope! Unless you carefully watching what movement occurred immediately prior to the loss of (name item here) you should search an area with the most light.

Add some humor to the search. PD sucks and stuff is lost along the way.

Sunday – 17 days into IT

I started to write this several days ago as a way to describe daily routine. Like, anyone wants to know about our (my) daily routine. (smiley face) Nevertheless, routine takes on a whole new meaning when you have little social interaction with others during the day. In my case, I will make this all about me, lack of that other contact seems to cause me to focus on Cheryl and her struggles during the day.

I have been taking very specific notes about her illness, lack of illness, med schedule, eating schedule, things going on around us.

I have to note here that it is easy to “get on each others nerves”. Part of that is I can be a pain in the backside when it comes to health issues for Cheryl. Keeping her from getting any upper respiratory infection is paramount to her health. Sometimes she develops a dystonia in her chest or maybe an air bubble in her stomach that she can’t release from her stomach. Her complaint is – I feel like I can’t breathe. Not a good thing to say in a hospital ER.

On Friday we had the new windows installed. Nice. On to the search for window treatments satisfactory to us both. Not wanting to fight the lets go look somewhere argument which is winnable but not in a satisfactory and gentle way, I have ordered something for my office which might suit me if it fits. This is a way to try stuff out without wasting a lot of time in a Covid-19 ridden big box store with almost the right thing. Almost the right thing I can get from Amazon.

In the early couple days of the self-isolation I was concerned with the size of my larder and the stocks therein. I should not have had that concern. Even though our place is much smaller and I have taken over many of the cooking chores, we still tend to buy things with the idea of – let’s make that – and then we get close to eating time and decide to eat out. I imagine that is pretty common among older adults. As a result, the larder was not bare when the toilet paper rush started.

I was disappointed that the ice cream case had been devastated by the TP hoard at our local IGA. Apparently they do not fancy frozen yogurt.

I started my notes on the first full day of Spring but they are sketchy notes and as the day wears on I become interested in other diversions so my notes are more cryptic and open to refinement or just abandoned for other pursuits.

March 21st

  • up @ 7AM
  • cooked pancakes
  • felt dizzy, laid on floor about 8AM-8:15
  • shower about 9:30am
  • 10 meds
  • 10:45 am lay down complaint – chest tight
  • up 11:15Am
  • later I noted Birthday cards – okay

When I read this list and reflect on it, it is a typical sequence of activity for the first three hours of the day. This was a Saturday so pancakes are special on the weekend. This tradition goes back 50 years or so in our marriage. I remember that after about 35 years or so the electric skillet, which was a wedding present from someone, died and a crisis developed. A new electric skillet was obtained but has never been precisely satisfactory. (sad smiley)

The dizzy feeling used to occur without warning. Once she collapsed sideways and fell to the floor on top of the soft drink bottles that reside there and did a number on her rib cage with the bottle caps. The lightheadedness does not occur with consistency but it is not atypical either. We know what to do and do it. Recovery is fairly quick.

Taking medication at 10AM and having a reaction to it thirty-five to forty-five minutes later is typical if it occurs. That reaction is not always present, but when it occurs, thirty minutes recovery is the usual course.

Cheryl has taken over the birthday card activity from her mother. When Elaine passed away two years ago, Cheryl decided to keep up her mother’s tradition of sending birthday cards to the nieces and nephews, grand children, great grand children and others. It is a big deal to her. every month we go to the Dollar store to get cards. Her mom liked the cards at the Dollar store so that’s where they must come from. (smiley face) The names and dates themselves are contained in an Access database which is the kind of work that Cheryl used to do. I should note here that this type of computer activity, albeit minor, is becoming more confusing to her. This confusion is exacerbated by the fact that as her movement is affected by various dyskensia motions and dystonia non-motions the computer mouse and software react to those and stuff moves around in the file structure and software links. (angry smiley)

March 22nd

  • She got dressed in the early morning (12 – 4AM)
  • 7AM – BR
  • 8AM – sleepin
  • 9:30AM still snoring – I woke & snoring 2 min later
  • up at 10AM (7am meds)
  • Frig rolls & OJ
  • 10AM meds at 12
  • listening to old albums
  • 12:20PM feeling OK
  • snack lunch
  • 1PM meds at 2PM (lay down 30-40m)
  • 4PM meds at 4PM
  • Played Scrabble CH/wins – she seems okay, movement & mind; no stomach
  • 2 Sin @ 2PM (not 2 1/2)
  • 10PM meds @ 11PM
  • working on thread organize
  • bed 10:30PM

I did not note what we had for dinner. Perhaps it was not of great note. But after getting up in the very early morning to take a shower – this has happened before – she was very tired and slept in. She probably took a shower in her sleep and eventually awakened and returned to bed. She told me this later in the morning, so I made notes. She does not remember where she was getting ready to go to. She sat in the kitchen for a bit and looked at the table cloth that she had modified to fit the table on Saturday. It comforted her that it was complete and on the table. She sat for a bit and returned to bed.

I awakened around 4AM and noticed she had changed her clothes and was awake. She told me she thought she was going somewhere. We held hands for awhile and fell asleep again (or I did.)

In the later morning when our alarm went off at 7AM, I arose and turned it off. She said, “Thank you” as she often does. I went to make coffee for myself. She stayed in bed. I thought she might since she had been up in the early morning. I checked on her several times but lately I err on the side of more sleep if I am sure that she has been up for a couple hours in the middle. She finally got up a little before 10AM.

Betty Crocker refrigerator cinnamon rolls or a coffee cake from me or a local bakery is another treat we often have on Sunday. We watch the recorded version of CBS Sunday Morning and enjoy our treat. I drink coffee. Cheryl drinks tea. Its a relaxing morning overall.

Cheryl has planned to give a bunch of her sewing supplies, scraps, thread, etc to Anna’s youngest, Virginia. Virginia has shown some interest in sewing and other crafts.

So, there you are, a couple typical days in the life. These are weekend days at the beginning of the whole Covid-19 pandemic sit-at-home-and-wait thing but it is pretty typical. An extra virus has not changed it much if at all.

Parkinson’s sucks, big time.