A Sense of Loss and Weary from the Journey

Whooopadiddee!

I will forever treasure this picture. Last year in Cincinnati, Janice (seated) came to help Cheryl with a fund raiser for Parkinson’s disease called The Sunflower REV it up for Parkinson’s. In this particular picture — once in a while I get a good one — they both have their smiles on. The single most disappointing thing about Parkies is often-times they loose their smile. They look stiff and glum.

Janice passed away early this morning. She had contracted Covid-19 from somewhere and the combination of diabetes, Parkinson’s disease, Myethenia Gravis, maybe a little COPD did not allow her to recover from the infection. We will miss her greatly.

She and her husband chased jobs to Florida many years ago. Next year they would have celebrated 50 years of marriage together. When the covid pandemic turned off our plans for a Golden wedding anniversary celebration this summer, they were quickly modified into a joint celebration next year, when, hopefully it would be safer. Alas, it is not to be.

Covid-19 is a peculiar virus. It is a predator that seems to be culling the society of the weakest and most vulnerable.

It is all part of His plan, but, today I am disappointed in Him and any plan that He has. Mere humans cannot understand God’s plan for us all. I cannot find solace and comfort. Not yet. It is too soon. First my Brother and now Cheryl’s sister. It is too soon. The loss is too strong. Perhaps later.

Visit in October of 2019

In the fall last year Cheryl and I visited my brother who was recovering from illness and one day we drove across the state to have lunch with Jan and Bill, their son Justin and Cheryl’s cousin Mary Kay and her husband Jay. This picture is from some Friday’s somewhere in Florida.

The trip was taxing to Cheryl. We drove. It was my choice to do travel that way. It allowed us more flexibility. I felt that I could abandon our plans at any time based on Cheryl’s mood, physical well-being or whatever came up. We stopped often and spent no more that six hours on the road each day.

McDonald’s respite

In a previous life I used McDonald’s as rest stops. Even if I was not traveling on an Interstate highway, their restrooms are generally pretty clean and the staff is generally friendly. Their corporate policing of properties, even franchise properties, is their reputation. They lose business if it is not up-to-snuff.

Today, after the news of Janice’s passing, I was elated that we had taken the opportunity to go and visit. We had not done so previously. I am saddened by the fact that we had not done so previously. It would have been easier pre-Parkinson’s. Life, employment and other unimportant things got in the way, so, we did not visit until last October.

I am gladdened by the memories. An animated lunch conversation and a visit to see Justin’s blow up decorations for Halloween were the highlights of that day.

Booowooohaha – scary all hallo’s eve – not so scary with the sun out.

Our house is sad today. Janice is with her mom and dad. There is a gap in the family that cannot be filled yet. It will take time and love to fill that gap.

When my brother passed away a couple months ago, I felt this same gap. I have been calling my sister more. There is only the two of us left from our original family.

Since Cheryl’s mother passed away two years ago her family started random gatherings of the siblings for birthday celebrations. The baby is now sixty years old. Cheryl has taken upon her mother’s activity of sending a card to children, grand children, cousins, nieces and nephews for birthdays and anniversaries or simply to say congratulations. She is a valuable resource as to what to celebrate. This is a good thing that they have started before any of them has passed away due to illness. Now the first one has died. Even though covid makes it dangerous for some to gather, perhaps it is time wear our masks and celebrate Jan’s life.

I am glad that I knew her. She was a wonderful loving mother to Eric, Kevin and Justin. A loving wife and caregiver to Bill her husband. A generous and loving sister to Cheryl, Nancy, Debbie, Dan and Ken. She was a loving and generous grandmother to Brandon and Olivia.

Our house is sad today.

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.