My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
A birthday picnic is a great way to do that. So, I reserved the picnic shelter in the upper left of this aerial photo to celebrate Cheryl’s (Grandma’s) birthday this year. If I can get all of her kids and grand kids and step grand kids all in one spot, she will be satisfied and happy.
Cheryl’s birthday often coincides with Mother’s Day. That always comes up when I suggest that we have dinner, a picnic or some other thing to celebrate her birthday. “You know that’s Mother’s Day? Right?”, she will say. Actually I never think about Mother’s Day, Father’s Day, Sweetest Day, Valentine’s Day, Sibling’s Day, Cousin’s Day or any of those other made up holidays. A curmudgeonly attitude to be sure, but personally I blame date dyslexia.
This year we are going to celebrate Cheryl’s birthday regardless of whatever else may be going on around us.
Maybe some of those other folks that have their own day will stop by to celebrate Cheryl Day with us.
Parkinson’s disease slows everything down so that many activities are hard. Just bull your way through that and do it anyway. Carpe the damn Diem.
A friend of mine put this on Facebook. I am certain that he put it there as bait and I bit. COVID is of course short for CO(rona) VI(rus) D(isease). The nineteen typically tacked on to the end is to demark 2019 as the year when the virus was first noted in Wuhan, China. The individual who first started the game apparently is displeased with the poor initial discussion of masks, personal hygiene, and vaccines.
This posting on Facebook is intended to rile folks up. I feel the pain myself. Having finished with my second booster shot of the Pfizer vaccine a week ago, I am elated. The previous leader of the free world could have celebrated his and his wife’s vaccination before they left the White House. He did not. The event was so low key that it was only reported after he flew to Miralago to resume the life of the rich and famous guy that he is.
I used to play this game when I was still working full time and some one would use an acronym with out first explaining what the term stood for. The implication being that if you did not understand the term you were not on the inside. I always made me laugh. If it showed up in an email I might ask an innocent question using my made up acronym. My favorite is SMART (Simply Magnificent And Recognizable Talent) goals. I think timely is a cop out. What does timely mean?
Think about it. Try UNSMART. (Uninformed New Sheep Mainly Are Really Trumpublicans) (political division)
Let your mind run wild. It is okay to use small articles and the verb to be in any answer. Be mean or generous, politically correct or not so, kind or not. There are no rules.
Over time some acronyms have become actual words (laser) and some words have become acronyms (smart). Language is fascinating.
Parkinson’s disease sucks but then a friend will send you down a rabbit hole with diversion of some sort for several hours of mental gymnastics. Thanks, friend.
It has been exactly a year since our stock club met in person. It is hard to express how much I missed those in person meetings over the past year. There is a lively atmosphere that does not come through the Zoom meeting platform.
Our club first met in March of 1984. Thirty-seven or so years ago a couple guys in the engineering department of a no longer existent machine tool manufacturer in southwestern Ohio said they were wondering if we could start a stock club. The Dow Jones industrial average was hovering just a tad above 1000. It was a big idea. We would all be rich men. All it would cost was $20 a month. Some things are lost to time but we started the club with ten members. We had as many as nineteen and now we are eight. Four of our members and former members are gone from this life. The rest are still here somewhere. We were all much younger then. Most of us are grandparents now, though not all. None of us are rich in a material sense, although we are rich in our friendship. It has always been fun to chase the rainbow.
We started with different expertise in each member on purpose. A stock club with only engineers was probably doomed to early failure. Every stock would be analyzed to death. One of the things that engineers are very good at is analysis. From the beginning the membership actively sought other members who were not engineers. And although today we are eight, we are only half engineering folks. We are not all retired yet.
For the first time tonight I realized how much the pandemonium has ruined our social fabric. There was a joy in the discussion about various stories, some stock talk, of course, but many other topics. Children, grandchildren, sports and travel are all fair game.
The market was up today. Or at least the piece of it that we owned was up. Life is good today.
It did not start out that way. Cheryl arose at 5 am never to return to bed. When she gets ups very early in the predawn she tends to be slightly confused most of the day. Today she did not take her meds right away as she has done in the past. She found the donuts left from Sunday and had two of those before she decided that she should take her meds. As a result she was merely thirty minutes or so early. She was, however, confused about the time and day of the week.
She was still confused about the day when she went to bed a few minutes ago.
Today was physical therapy day. Brittany (PT) spent extra time with her standing up from a sitting position and balance. She also spent time getting Cheryl to do several of the LSVT Big exercises that Cheryl struggles with.
Cheryl has never been a sports person in her life. Much of the demonstration and lecture about exercise and form is lost to her. Now that she has Parkinson’s disease it is more so. But it helped her, for, as we drove home, she suggested that we go to a park near where we live and we walk around the walking path near the creek.
So Carpe the Diem – we went.
I do not know if Sam Clemens said this or not. Somehow it does not seem curmudgeonly enough.
It is a Friday in Lent. A favorite throughout our married life, all fifty of them, has been Macaroni and Cheese. Often through the years this recipe was trucked out on Fridays in Lent but it is an enjoyable dish, pretty basic, so we eat it at other times also. The Betty Crocker – Dinner for Two cookbook – has been beat to death over the years so about three years ago it was taken apart and slipped into page protectors and a brand new binder. Hopefully some grand child will appreciate the effort their grandmother spent saving this classic cookbook from the 1970’s.
Over time I have taken over most of the cooking duties. Some of that is driving the car to the restaurant or diner but many times I have selected some favorite of ours that I hope will not give her indigestion. My experimentation with Hello Fresh was all about getting new ideas. The Parkinson’s medications have made her stomach sensitive to some foods and spices. We have discovered some of those as we experiment. She lost her sense of smell long ago. Simply old age has made my stomach sensitive to some things and I suspect Parkinson’s disease has merely complicated matters for her.
In this Lenten season the whole covid thing has stifled the church fish fries somewhat. One can still drive through but it is not the same as going and hanging out with friends in the school cafeteria and socializing for a bit. This year our pizza Tuesdays have morphed into Frisch’s fish sandwiches with mac and cheese. The last couple Fridays I have made the mac and cheese.
This afternoon when I got back from school, she said, I want to make the macaroni and cheese. Okay, I said.
I am staying near to help if need be but I suspect I can be smotheringly helpful. So, I am backing away a bit to see how she does. Carpe the Diem, baby!
She is sewing on the never ending chair arm cover project and working on mac and cheese. I am doing laundry, drinking Miller Lite beer, listening to Flo-Rida (Oh, my lord, the light’s going down and the weekend’s here…) and writing this unimportant blog.
Carpe Diem I suppose also can mean do the laundry and back away from the mac and cheese.
Cheryl fell yesterday trying to retrieve something from her office. Our neighbor had been over for a Lenten dinner of fish and macaroni and cheese. She brought some fruit and ginger bread. During our discussion after dinner Jane said something that caused Cheryl to go to her office to retrieve a church bulletin. She stumbled and fell into the corner of the cabinet that props the printer off the floor. She bruised her chest. It was hurting her today. She moped around for a while and I convinced her to take an Ibuprofen to relieve the ache a bit.
After a bit she announced that she did not feel up to going to church. A bit later I suggested that we go to our favorite park to walk along the riverbank. We did that. A wedding party was celebrating and taking pictures.
We stopped at Nick’s Cafe in Cleves, Ohio for an early dinner – late lunch.
We took the scenic route home and I suggested we stop for ice cream. Aglemisis’ is very small in Montgomery. We got ice cream to go and sat in the car for a time and just talked. When we came home she laid down and rested for a bit.
When she got up, she looked through her Christmas cards. She was comforted by that activity.
This book is a favorite of mine. If I remember to do it when I make mashed potatoes and something for dinner, I save the potato water and leftover mashed potatoes to make bread a couple days later. Two nights ago I remembered. I saved the water that I boiled the potatoes in. In his recipe he strongly suggests not adding anything to the potatoes.
Having gone through a couple of recipe cards from Hello Fresh recently I have decided that I like mashed potatoes made with sour cream and butter. Some of these were left over. I have about a cup of mashed potatoes. I used these. I am interested to discover how that modifies the flavor.
I have made this recipe with plain potatoes and with mashed potatoes in the past. Baking bread is intriguing for me because it seems very small changes to a recipe can make very large changes in flavor. Try it – grease one loaf pan with Crisco and grease another with lard. The flavor difference is noticeable. Very subtle but also very different flavor in the type of release agent used.
The round loaf goes to a neighbor who made a tuna noodle casserole out of the blue and gave it to us. She supplied it in a large ramekin bowl so I used it to bake the boole in. I hope she likes it. Potato bread makes hearty french toast.
If you can, bake something every week. Life is a one time deal but better with fresh bread!
Today is the day after St. Patty’s day. So what? Nothing what except we are now three days into the asinine idea of Spring forward. In another week or so we will be adjusted to the new med schedule but not yet. I could spend several paragraphs discussing the odd arguments pro and con to the whole idea of time change but it seems to boil down to a cover-up for a scheme to get more golf daylight without having to negotiate with each individual employer to do so. Who started this idiocy?
What a mess with a parkie! For those of you who are not taking care of a Parkinson’s patient on a daily basis, it is a crisis in disguise. The medication schedule is off by an hour all day long. I know from previous experience she will be miserable for about thirty minutes before each dose and then about thirty minutes after each dose as the meds kick in and the chemicals stabilize.
Assorted confusions appear in her mind. Early this morning when I got up and brought her her first dose of everything all seemed normal. I sat on the edge of the bed and waited as she did everything she needed to in the bathroom and then took the collection of pills I had set on the bathroom counter. When she was done I took the little glass bowl we use and the water glass back to the kitchen. Usually when I return from that we have a little discussion about what is happening that day as she is deciding to lay down a bit more or stay up. Today, she was still standing at the bathroom counter waiting. I asked her if she needed something else and she responded with she was waiting for that guy to bring more pills. I convinced her that there were no more pills for a few hours. And we had to go nowhere until noonish when her exercise class began. She seemed satisfied with that and we napped for a while more.
I awakened about an hour later and realized she was in the bathroom again so I got up. In the daylight savings time darkness I could see she had laid out some clothes that she might wear if she was going to church. I gently pointed out that we are not going to church. We were going to exercise class later. Anger and confusion appeared so I went to the living area to prepare for the miny tirade with some coffee.
In the kitchen I helped her get some cereal and dried fruit for breakfast. Life cereal with dried cherries is her favorite combination for breakfast with some orange juice. She ate that and I had some scrambled eggs with toast.
Afterward she started. One minute we are going to church, the next minute you say we are going to a funeral, and now you tell me it is an exercise class. Which is it! I do not understand why it keeps changing. Pointing out that she was dreaming and when she awakened she continued on in the dream, although appearing to be the case, was not the explanation she wanted. She was certain someone (me) was trying to purposely confuse her and she was tired of it.
Joe Dater – cartoon
Last night was very tiring she told me. You mean the business with the address list? Yes she said. I thought there would be more so I took my coffee to the chair I often sit in. On the previous evening she was organizing her birthday and anniversary card list. I had hoped to help her and simplify this activity last year with a new planner from Staples. All of the information I have installed in a spreadsheet that Avery can read so that I can print labels for each card. I printed labels and last year she carefully pasted the label information on the proper page in the new planner. Each month she gets out two or three old hand written address books left over from her mother and from her office before we moved to the condo minimum. I asked where the new planner book was and she responded that she uses that but it was going to take a year or longer to get the correct information in it. I incorrectly pointed out that she had put the information in there last year which caused an angry response so I quit talking about it. Eventually she became tired, took her night time meds and went to bed. So did I. It was early for me too.
And then she became calm. She got her sewing project and sat down to watch the early morning news with me for a bit. And I might be understanding the confusion. The old address books are crammed with a lot of info in a small space. The planner — being a planner like a teacher might use — is organized by month and day. We labelled it with the correct info on the correct day but her cognition no longer allows for that recognition. To her, it is a big black book with almost no information in it. I may have to create a cross reference by name and family.
Exercise is more effective than drug therapy
On the way to class she suggested that we go somewhere for lunch. It started goofy but it may turn out to be a good day.
We went to our old favorite diner for lunch after the exercise class. We had not been there for more than a year. Her conversation was about the diner and old remembrances. The diner had been painted and the ceiling had been replaced. It was much brighter inside. Often something on the menu in one of these places will spark a memory of part of her family. This time an old friend that we had not seen for awhile strolled in to have lunch with her friend.
The pandemonium seems to slowly ever so slowly to be breaking free. “Hallelujah” is on the music loop at the exercise class.
Sadly the daylight will be saved whether it needs to be saved or not. Personally, I think not. The system is idiotic. Keep in mind China has only one time zone. Geographically that country is as wide as the U.S.
Chart from the U. S. Navy
And Parkinson’s will still suck. Just more so while we stand still and the time zone shifts left or right.
As a part of our previous stimulus package spending we purchased new furniture for the living area of our condo minimum. (smiley face) The three pieces of furniture do not come with extra material to cover the armrests. My clever wife with Parkinson’s decided that there was no problem with that and she set off with a neighbor to the fabric store to purchase some suitable material to manufacture armrest covers.
Two of the chairs do not have arm rests that have a distinctive right and left shape. Those are easy peasy. The third seating area which is a small sofa has an ionic volute curve shape to the arms. Her arm covers have a right and a left shape to them.
The engineer in me leaped into the breach to explain how to make a pattern and plan to sew a right and a left. The Parkinson’s patient listened diligently but did not understand. Several efforts have produced two lefts, then two rights. two weeks later and listening to conversation between her and our niece who cleans for us, she is on the road to making a left which is finished and a right which she is working on.
She has started this several times before and somewhere in the project right became left. This time I will try to be unobtrusive and get to the sewing machine before right becomes left.
Parkinson’s requires gentle unobtrusiveness but it still sucks. Happy St. Patrick’s Day!
The single most important thing for a Parkinson’s patient can do to improve their mood, movement, emotions, strength and well being is exercise. For a normal person this is a merely a scheduling activity. For a Parkinson’s patient it is difficult.
Complicated for someone who never did sports at all. A former sports person would be resolute in their efforts. They would have had that former experience in their life of exercise and training that keeps telling them that it will be useful. Perhaps they had to train to recover from an injury. Perhaps they wanted to hit more three-point shots in basketball. Perhaps they wanted to hit the ball a little straighter in golf. Perhaps they wanted to strike out that guy who hit it over the center field fence the last time they pitched to him.
For a parkie it is a matter of walking to the sink to get a glass of water.
LSVT Big is a therapy for getting Parkinson’s patients moving again and keeps them moving. The exercises seem simple to a person who has no difficulty with movement. After twelve or fifteen years of effort she is more resolute than ever to keep exercising.
But it requires organization and her mind refuses to cooperate.
Adjunct_Wizard 