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.
Are the heralds of Spring. In bright yellow against the budding green plants they shout, look at me. I am here. And dare the deer to eat them. When Mr. Sun comes out they shout their greeting louder.
I suppose they do not taste very good.
I Wandered Lonely as a Cloud By William Wordsworth
I wandered lonely as a cloud That floats on high o’er vales and hills, When all at once I saw a crowd, A host, of golden daffodils; Beside the lake, beneath the trees, Fluttering and dancing in the breeze.
Continuous as the stars that shine And twinkle on the milky way, They stretched in never-ending line Along the margin of a bay: Ten thousand saw I at a glance, Tossing their heads in sprightly dance.
The waves beside them danced; but they Out-did the sparkling waves in glee: A poet could not but be gay, In such a jocund company: I gazed—and gazed—but little thought What wealth the show to me had brought:
For oft, when on my couch I lie In vacant or in pensive mood, They flash upon that inward eye Which is the bliss of solitude; And then my heart with pleasure fills, And dances with the daffodils.
It produces a reaction in me close to anger. I do not understand why. Anger is not quite right. Disappointment and some sadness with a little depression mixed in is a better description of the emotional mix. The only constant in life is change. However, that does not mean we have to like it.
In Matthew’s Gospel 21 (28-32) there is a story (parable) and I thought of it as I reacted to Cheryl’s idea. The parable in Matthew is about a owner of a vineyard who had two sons. He asked (told) his first son to work in the family business. He replied that yes he would go but he did not. When Dad talked to the second son the kid replied, nope, not today. I am hanging with the boys. He later relented and went to work for his father. It had not been more than a couple of weeks since it was read at mass.
That second son’s reaction was much like mine when Cheryl told me a confused story about Dan and Lynette. She though that Dan was a the Hospice of Cincinnati facility visiting with Lynette who was dying. He was not but I did not talk to him as I should have. My first reaction was similar to the second son. Nope. Ain’t doin’ it. I have no good memories of that hospice facility that is where my father died.
I gave in and took her to see Dan and Lynette. I put whatever little dinner preparation I had started back into the refrigerator for later. I made the five minute drive to the Hospice facility.
Cheryl was having a good day. We ran some errands and took a walk in the park. We had lunch at one of our favorite lunch diners. Our activities were all spontaneous. It was one of those sixty-five degree early March days. It would have been perfect if there no breeze at all but it was an okay breeze of five knots or less. It was very sunny. When we returned I told her about Dan’s call on Saturday. She did not return with the hostility that I expected as I had not told her right away. (This kind of news makes her upset for days.) She did react by calling Dan back to talk and find out what was going on.
When we got to Lynette’s room and I realized that Dan was not there I called him. In our conversation Dan explained that Cheryl kept asking where he was and did not seem to understand he was not there at Hospice. I asked him if he wanted to come. He does not see well and does not drive at night. He said yes he would like to do that and maybe we could get something to eat.
We drove across town, picked him up and came back to visit Lynette. She was unresponsive when he was there as she had been when we were there forty-five minutes earlier. Dan is a pretty quiet guy but he was a little beside himself. After a short visit watching Lynette’s irregular breathing we went to get something to eat. Dan insisted on paying for dinner.
We talked a lot while we were eating pizza at one of our local pizzerias. Comfort for a friend is something for which one must always find time. I have no explanation about my initial reaction other than it was about me. I had planned dinner and had comfortably settled into my chair to read before I had to get up to make dinner. I had no intention of comforting someone who was grieving that evening. Cheryl had been very upbeat and happy all afternoon. I was feeling pretty good myself.
Kindness to others earns grace. If only life was easy. This occurred on Monday. Late Tuesday since I had heard no more from Dan, I sent him a text and asked how things were and if I could help.
This is Wednesday and Lynette is deceased. Dan called late last evening to tell me that Lynette had passed on today. It is a sad moment for us both. Cheryl was asleep. I did not wake her with bad news last evening. This morning as I was going through my litany of what was happening today, I told her about Dan’s call. She was confused for a bit. She will ask me about it later.
One of life’s little twists just happened. Fate/karma/luck/the angel Gabriel – whatever brought me back into their lives on the last day of Lynette’s. Time for a little meditation and maybe prayer and reflection.
Cater was the answer to Wordle today. I am a little sad today. Lynette was good people. The only person I knew who knew how to tat lace. She had lots of crafty talent. She was an executive chef and a good cook. Dan is retired away from the “front of the house” in restaurant parlance. The restaurant business is where they met. Lynette was a very special person and I think I am better for knowing her in life.
May Lynette rest in peace without pain and dementia. Carpe Diem.
She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.
This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.
I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.
She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.
It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.
She agreed.
We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.
She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.
I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)
Scary activity for someone not steady on her feet.
I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.
We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.
Some days things just seem to go better with pie. If you want to lift your spirits a bit, make a pie. Whatever kind of pie you want, just make one. You can buy a pie of course, and that will settle the need for a sugary delight, but if you want to ignore the world around you for a while, make your own pie. It might turn out ugly but it is yours and it will taste scrumptious.
I have been down on myself for a few days. I think I worry for the folks in Ukraine. I do not know anyone in Ukraine but it is kind of stinky that a short guy with big army and navy can just drive over the fence and poop on the short guy without a big army and a navy with only one boat. That situation just sucks.
This is an ongoing conversation in our house. Cheryl struggles enough with day to day things. She fears for those mothers and children showing up at the Polish border behind the reporters that flew there in order to record the history of the short guy beating up the other short guy. From the news reports it looks as though the partisans are taking root in Ukraine and in Russia they are taking a nap. The world markets are yinging and yanging around and today I paid $4.999 a gallon for 12 or so gallons of gas to fill up my car. It was the first time I have spent more than $50 to fill up a car. That situation just sucks.
Time to make pie and eat it.
an old favorite recipe modified
This particular recipe guidance is a favorite one. As you can see specific types of apples and the resulting pie has been noted by Cheryl. When she drug me down the cooking road a couple years ago I picked up what we call the “Big Green Cookbook”, so called because it is about two inches thick and has a green cover, to learn how to do pies. This book reads much like my grandmother’s cookbook that is a collection of church ladies’ recipes entitled “Culinary Cullings” from a farming community in Rich Hill, Missouri.
“6 apples” but no reference to general size. “1/2 to 2/3 cup”is the same as writing some but not too much. It makes me smile to read these measurements. (1 recipe plain pastry — but no hint about where to find that.) I have modified and added to the instructions myself. Since it is unspecified I use dark brown sugar with my teaspoon of cinnamon. I also add a couple tablespoons of tapioca. I got this last one from my mother who learned how to make pie from my grandmother. I think I got my bravery to adjust ingredients and try new spices from Mom. She was pretty damn good cook and liked to have a gin and tonic while doing it. Perhaps I will try a gin and tonic with my next pie.
So today is PIE day. A little early actually because the math enabled folks celebrate 3/14 as pi day. But I digress.
Yummy
For a short time this afternoon I have bumped Cheryl off of her worries and anxiety about world idiots.
After the pie got to the condition shown above I went of to find the big round Tupperware pie saver we have owned since about 1975. Gone. I was worried that Cheryl had put it in a special place so that it would not get messed with by the little girls that live in her head. I put out a text query to the kids and found out I had left it at our son’s house. I probably took a pie there.
She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.
That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.
Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.
We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.
She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.
I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.
The puzzle is completed. Hallelujah! Kill the fatted calf. The Christmas 2017 puzzle is complete. So, now the question is what to do with it? I suggested that she break it into the tiny little pieces she started with and pass them on to her sister Nancy. She is still thinking about it but that is probably what will happen.
Who knows maybe this is a new hobby. It certainly is an occupation once it starts. Cheryl seemed very content while this whole process was happening. Cindy is an enthusiastic cheerleader and champion during the activity. I was not gone for a long time but when I came home they were puzzling away.
I started dinner. I had been out in the rain that we had ahead of the icy wet snowy crap that came today. While out I decided it was a good day for stuff soup.
Stuff soup:
2 small onions chopped
several (5) carrots pealed and chopped
several (4) small potatoes pealed and quartered
several (5) stalks of celery chopped
a head of broccoli chopped – the stems are good in soup the flowers tend to disintegrate like peas.
the end of the bag of frozen corn (maybe ½ C.)
half a cup or so of frozen peas.
½ lb. of mystery beef – bought out of the get rid of it soon shelf at IGA – chopped int ½ in. cubes
some whole wheat pasta for health reasons.
In a dutch oven put about 2 tablespoons of olive oil and dump in the onions. Stir them when they start to sizzle. Rinse the carrots and celery and when you are satisfied with the onions, let them brown a bit, dump in the beef. Brown the beef for awhile and enjoy the aroma. When the kitchen smells like a good diner, dump in the celery and carrots. Stir it up for a bit and put the lid on and give it a few minutes. This is a good time for a little salt and pepper to taste.
When you are ready dump in a box (32 oz.) of whatever broth you like. I used beef broth here. Bring it all to a boil and start the oven set to 300F.
Dump in the frozen peas, corn and chop the broccoli into small pieces. When it starts to boil again, dump in the broccoli and put the lid back on and stick in the oven for 30 minutes or so.
Add the healthy pasta at the end of 30 minutes and set the timer for 10 minutes more. Set the table and find some rye bread to go with everything. Put out the butter, bowls, silverware, etc.
Sit down in the kitchen to eat so that the puzzle can be viewed from afar. It is better to leave the dining table undisturbed. Speak to the small children attempting to mess with the puzzle even if you cannot see them.
Maybe I should look for the special table to build the puzzle on. I kind of liked having dinner at the dining table. We sat closer to the little apparition girls and I could chase them away as necessary while eating. The little girls seem to show up a lot at dinner time.
Many months ago Cheryl started on this puzzle. I wrote about it before. I could figure out exactly how long ago but the specific span of time is actually unimportant to the story. Last week when Cindy came to sit with Cheryl for a bit so that I could go do whatever I wanted to do by myself, I said to her that she could help Cheryl with this puzzle that she has been ignoring for months. I said that thinking that it would go over like the proverbial lead balloon – what is a lead balloon? – but Cindy is an enthusiastic puzzle doer and she sucked Cheryl along with her. I left to do a couple errands and take a walk.
Two hours or so later when I returned Cindy and Cheryl had not moved from the spots alongside the dining table where I unrolled the puzzle and reinflated the tube that the felt surface was wrapped around with the trapped puzzle pieces. Cindy had Cheryl hard at work sorting pieces of like color and they had assembled several chunks of pieces to figure out where they fit in the picture that came with the puzzle. They did not finish it that day. It is a half thousand pieces of a complex image of small town Christmas.
The picture when completed
Lots of colors are involved. We bought this puzzle several years ago. I think we may have had it for a couple years by the time the pandemic broke into pandemonium everywhere. It came from a Barnes & Noble book store that we happened to be shopping in for one of the grandkids. Cheryl passed by the puzzles parked in the aisle and was inspired to retell the story about someone at Bridgeway Pointe assisted living facility who worked puzzles all the time and lived down the hallway from her mother. I remarked that she should pick one out to do for herself and she selected this Christmas scene.
Leaving it on the dining table is somewhat of an inconvenience at dinner time as I had gotten into setting the dining room area for two. We had used mostly the kitchen table when we first moved into the new condo and reserved the dining table for company. As I took on most of the cooking duties I decided to use the dining area more instead of preserving it for non-existent company. Had we stayed in our old house I suspect that I would have gotten to this point there also. For now, we are back in the kitchen for dinner.
For several days after Cindy’s inspiration we walked around the puzzle on the table awaiting Cindy’s return. I did not mention it. Cheryl once suggested that she could put it in her office and I persuaded her that it was not in the way of anything. She was worried that her little people that she sees occasionally would disturb it but they have not. Last evening she started to work on it. It was a spontaneous move on her part. She worked on it for a bit. I texted this picture to Cindy. She responded with, “Great! Don’t let her finish it without me.” There is not much danger of that, Cindy.
I checked on her during the evening. She worked on it for about an hour. She found two pieces that seemed to fit together but they did not. I was able to help her find a couple pieces and fit them somewhere in the picture.
Her memory seems to be going faster. She looks at a piece and as she looks at the picture the shape is lost in her visual memory. It is a long process.
She went to bed early and did not seem to stir all night long.
Look at this she says to me holding up the obituary page in the paper today. I rarely look at the obituary pages. Cheryl reads them everyday. It is the one of three reasons we still subscribe to the U.S. News and World Report Cincinnati Enquirer. The three reasons are obituaries, comic and puzzle pages, banner page with today’s date. I occasionally look at Daugherty’s sports column. He is a good writer.
I asked, “Is there anyone you know?” But she does not recognize any of the names. She goes through the list several times. The first go does not register every name. She has had two and a half doughnuts and she brings a clementine orange as well as some orange juice with her to her chair as we settle to watch the TV. Lately I have been purchasing Minute Maid orange juice concentrate from the store. It is about $1 more that the store brand orange juice. I do not drink orange juice with breakfast. It is the only thing Cheryl drinks and has been for some time.
She tells me that the Enquirer publishes a list like this a couple days a week and it is much longer on Sunday. I relax as I listen to her talk about dead people. Death is a part of life I remarked. Yes it is she replied without looking up from the list as she read it one more time.
She reads the list carefully as we watch Sunday Morning on CBS. There is a story about Liza Minnelli. Cheryl catches the reference to Judy Garland at the end and remarks that she is dead too. She is thinking Liza is dead, I suddenly realized. There is no point in correcting her thought so I do not.
It is Donut Sunday and she is sitting with me watching what I think of as our Sunday show. We used to watch this show on the VCR after Sunday mass. We often stopped at the Pleasant Ridge Donut Shop on the way home. We always walked to church.
Last evening after church we went to a local pizza haunt to enjoy the quiet and have something to eat. The Cincinnati Bengals playoff game had sucked the life out of the late afternoon pizza scene. The NFL had assigned them the 4:30 PM slot on Saturday. Few people attended church that evening. Some of the lack of attendance may have been due to the latest covid wave or the play-off game.
After we entered the empty restaurant and settled at our table conveniently located with a clear view of the sixty-inch flat-screen TV, another crowd of six appeared and was seated at a nearby round six top. After our dinner – a small pizza for me, a favorite appetizer for her – I suggested that we drive over to a local bakery for some doughnuts or a coffee cake for our breakfast tomorrow.
We did that and as luck would have it, the doughnuts were a special price to move them out of the store. I will have to remember this for future reference and future Donut Sundays.
Today is a good one. I am pretty sure that she slept well last night.
I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.
Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.
So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.
Guys chasing a suspected super nova…
The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.
Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.
Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.
As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.
Max put this video together. He captured the video off of some old VCR tapes. We watched it last evening at his house in Beaver Creek and then we opened presents. Click on this link to watch Max’s video. It was long ago. It was nostalgic.
Adjunct_Wizard 