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.
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.
Today I was working on material for school and as I often do I ask Alexa to play the first artist’s music that jumps into my head. Today Phil Collins and his old band Genesis jumped into my head. I asked for Phil Collins by name and found myself listening to a bunch of Disney tunes. “You’ll be in my heart” (Tarzan) just got to me emotionally and tears came to my eyes.
I suppose it is hard for men to come to grips with how they feel about someone or something if it involves emotion. Many of us are embarrassed by our emotions. I know I am. But I have come to grips with the fact that it is a good idea to let those emotions pour out without embarrassment. I try to do it in private if I can find privacy. I have no worries if I cannot.
As the Parkinson’s disease continues, I get a sort of slow motion grief feeling that takes all of my effort to recover from. This feeling is occasionally overwhelming. Music can bring the emotional response to this feeling spontaneously. I my case, I usually do not recognize that I was feeling this way in the background. Words to song or a melody will bring it to the surface. Earlier this morning I spontaneously began to cry. I waited for a bit and felt better. I suppose it released something in me because I feel better about life today.
Cheryl seems pretty good today also. Let’s have lunch out somewhere after exercise class. Okay, she said.
It is a rainy almost Spring day in Ohio and for now Parkinson’s is in the background.
I often find a song or melody that intrigues me at that moment. Kroger has been playing “Low” in some of their commercial advertisements lately here in Cincinnati.
Before that ad I had not heard the song before. It is a rap song. I have very few rap songs in my list of songs that I like. I do not have the same experience that many rap artists have, so, many of the popular songs with spontaneous rhyme and rhythmic lyrics do not connect with my old brain. “Low” does for some reason.
I told Alexa to play rap music. It selected a Hip Hop station that “you might like”. Perhaps I will listen later longer. Rap lyrics remind me of beat poetry. Recently Lawrence Ferlinghetti died. For some reason, in my younger years, his style of poetry interested me. I had his book of poetry – “A Coney Island of the Mind”. I have not seen it for years.
I vaguely recall that I had lent it to someone long in the past. Today I scrambled around to find a copy of a book of poetry that has probably been out of print for maybe sixty years. Amazon is a wonderful thing no matter what Donald Trump thinks.
I switched Alexa from Hip Hop to disco. “Staying Alive” is playing right now.
What do I do to pick myself up? Usually several things at once. Music certainly helps pick me up.
Music is very personal. Long ago I worked for a private company. One of the partners read a book somewhere that convinced him that music played over the PA system would lighten the mood and make everyone happy in their jobs. What a load of crap that book was. The music selected was what ever the office was using as hold music. MUZAK was a special broadcast on a side band of one of the local FM stations. It was perpetual elevator music. It was excruciating to rock fans like me. Christmas holidays brought a five hour loop tape of Christmas carols and other crap over the office PA system. On the second rendition of Mitch Miller’s jingle bells it was time to go home. Some were up-sot!
“Toes” is playing now. I told Alexa to play — life is good today. I need to get my toes in the water and my ass in the sand as soon as I can, pandemonium or not.
A nifty song by REM playing on Pandora or something when I took Cheryl to a physical therapy session with a nice young man from U.C. Health in Cincinnati. I wondered in my head, is it?
It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it (time I had some time alone) It’s the end of the world as we know it and I feel fine (time I had some time alone)
The lyrics are kind of stream of conscience similar to “We didn’t start the Fire” by Billy Joel. It made me think, is this a new way we are going to operate from now on? Mr. Joel’s song is an earlier history of an earlier century. But then he is about my age.
So, is it the end of the world as we know it? Is it the new normal? What is normal? My normal is probably not your normal and why do I hate that comment about it is the new normal. Simply put, what is IT? For a Parkinson’s patient abnormal physical difficulty is common. The part of the disease that is hidden, mental confusion, memory loss, delusion and sometimes hallucination is also normal.
Today for the first time I thought seriously about quitting the little part time job I have with a local community college because it takes me away from Cheryl. And yet, I need time away from her and the care giving. But I believe I need the time away to be on my own terms.
Perhaps I want to take a walk in the park by myself in which I am not part of her support structure. Perhaps I want to walk at my own speed which is much greater than hers but did not used to be. Perhaps I want to take a walk were I do not have to slow to a pace less than a stroll to allow her to stay with me. There are times when we creep around the circuit and I try to get her to take full steps. Perhaps this Parkinson’s has gotten into my head far enough for me to ignore my own needs.
Cheryl really likes to walk but it is a struggle for her. She really likes to play Scrabble but it is a struggle for her. She likes to think about and organize her support group for Parkinson’s folks but it is really a struggle for her. Lately she has decided to do puzzles, well one puzzle so far, as a hobby but it is a struggle for her.
This is normal. There is nothing new about it. It is not the end of the world as we know it. It simply is the world we have.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
– Max Ehrmann Desiderata
Desiderata by Max Ehrmann has become for me a meditation. I try to not distress myself with dark imaginings but on some days that requires drawing strength from a reserve that is depleted.
Michael is right. Parkinson’s sucks. Stay calm. Keep moving forward.
We were driving to get Cheryl’s second dose of the Pfizer Covid-19 vaccine so that we could, half of us anyway, become part of the herd immunity process to tamp down the CoVSARS pandemic pandemonium. I had stopped at a traffic light and looked to the side of the road to notice a road sign post with only the sign at the top. Someone had removed the Ohio Route 561 sign from the post immediately below the JCT sign. It was a naked looking post and my dad’s words. “vandals had removed the sign” jumped into my head. I could actually hear his voice.
Weird, I thought.
When I was first driving, some friends and I were tooling around Fairfax, Ohio heading to the Frisch’s on U. S. route 52 that ran through the sort of village center. We were still traveling on the residential streets. I was still learning that although you may have the right-of-way it is a prudent driver who looks to see if the other driver believes that to also be the case. On this particular day a teaching moment happened.
Another teenage driver, female but that fact is of no consequence, suddenly appeared in front of me in an intersection with which I was familiar and which I knew to be the main street. She had a stop sign which she had ignored. Boom, bam, bang, tinkle tinkle. I hit her hard enough that the car she was driving raised up off the ground, slid a little and slammed back down on the pavement. I was driving Dad’s 1960 Chevrolet Impala. She was driving some littler beige car. Her door was dented. Dad’s bumper was dinged a little and the fender had a scratch in the white paint. I was impressed with how little damage there was to Dad’s car and how poopy her car looked. But cars had bumpers then and frames to mount them onto. I had slammed on the brakes so the car had nosed down and lifted hers up. No one was injured.
Police were called by some neighbors. The policeman gave the girl a ticket. She complained that there was no stop sign for her. He pointed at the post and said it really did not matter for even though vandals had stolen the stop sign, I had the right-of-way.
When Dad helped me to right the accident report to the insurance company and file my version of the event with the State of Ohio, he said I should write that she did not stop because, “vandals had removed the sign.”
Today that jumped into my head. I had not heard Dad’s voice for awhile.
An update to the story — The bottom line of the puzzle has appeared out of the sorting process.
She has decided that she will work puzzles as a hobby and diversion. I bought her a 500 piece puzzle to do. To tell the tale properly I have to go back about two years. We were Christmas shopping for the grand kids. We had passed by some puzzles in Barnes & Noble. She remarked that there was a woman at Bridgeway Point a local assisted living facility where her mom had been living until she passed away the previous year. And that she would like to get one to try it. She thought it might be fun to do.
We bought a 500 piece puzzle with a busy image of cars and buildings and dark sky with stars. We brought it home and it sat in the corner where Santa stores stuff for wrapping. After Santa wrapped the presents for the grand kids the puzzle box remained there for two more years until this past covid infested January. The puzzle discussion came back. I knew exactly where it was because Santa had not moved it in two years of wrapping.
Oh good! There it is! Where can I do it? I remarked that she could do it on the dining room table. I did not think anyone would disturb it. Only we live here.
What if Zachary comes over? Well, I do not know.
Your cousin John had a special table to put his puzzles on. It folds up when he wants to put them away. I said I would look into it. Then I bought a special mat to puzzle on. It arrived about a week and a half ago. This is a slow motion activity. One day this past week I blew up the balloon that it rolls around while watching the birds attack the snow covered feeder.
It is useful and has outlines of various puzzle sizes. Never mind that her puzzle is 20 inches by 20 inches when complete and it does not have that size printed on it.
As she stared at the rectangles printed onto the mat we had long animated discussions about how to do it. She wanted to find the center most piece and build outward. I suggested that that would work but it will be easier to find the edge and corner pieces and work in but it was up to her. Whatever she thought was best for her to do, I said.
She has decided to initially separate the pieces into groups of her own design. Edge pieces in one pile, Red here in this pile, yellow in this pile and on. I need some plastic bowls with lids that fit. I tried to purge the kitchen cabinet of the leftover bowls that went through the dishwasher one to many times and were warped by the heat.
These are okay but the lids do not fit. I need the lids to fit.
The mat is supposed to roll everything up I said. Yes, she said but I need some bowls with lids that fit until I roll the mat up. I am in the midst of hunting on Amazon for bowls with lids that fit. Looks like I can get these preloaded with cookies. That would be a real bonus.
It is interesting how a parkie mind works or doesn’t work. I am still waiting to see how the puzzle gets started.
So far we have two bowls, a box and a zip lock bag. The mat is rolled up nicely by itself.
Adjunct_Wizard 