My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
I have almost completed my experiment with Hello Fresh. As we have traveled down the Parkinson’s road I have taken on the duties of chef as well as the laundry and other housekeeping activities. I have outsourced some of the cleaning duties to my niece because dust does not bother me but Cheryl likes no dust or fuzz anywhere. I have sort of honed in on baking. So with a little imagination we can center a whole meal around – What’s for dessert? I am embarking on a new twist on an old hobby, make a cake, bread, cracker, cookie or whatever each day that I have never made before.
It can be a mix, scratch or special adaptation. Tonight I have made a standard pumpkin bread mix and added raisins to the mix. Recently I read “Miss Graham’s Cold War Cookbook” by Celia Rees. In it the main character becomes a reluctant spy and she and another woman concoct a code of sorts by exchanging recipes. Some are detailed enough to try.
I have acquired some new baking equipment to accomplish this. One recipe requires a tube pan. Miss graham makes reference to a Sally Lunn recipe. Or more specifically she is talking about a German bread recipe and says it is much like a Sally Lunn. A quick review of the internet of all knowledge (IOAK) and several sally lunns popped up. I have selected the one linked to here to try with my new tube pan. I am unsure of what to make of the comment to split the cake and fill it with custard. I will probably make it and not do that to see how it turns out.
Code at the beginning of the new chapter
At some future time I will tell you how it turned out. As a caregiver I am always looking for ways to improve the experience of what can be a debilitating disease but does not have to be. Some of this is food. Cheryl lost her sense of smell early on. It was the loss of smell that in part led her to the doctor to ask the question – is it normal to lose your sense of smell when you get older? It is not, of course, but it does change how food tastes. Her smell sense is not completely gone but it is diminished to the point where salty, bitter, sweet, sour and savory (umani) jump to the fore. I do not know what umani tastes like. I keep trying new things.
What do you think? I could make bangers and mash. Ugh was the response. I might have to sneak up on that one.
Cheryl keeps old cards as did her mother. We have had a long standing tradition of keeping old greeting cards in our home. Cheryl has kept cards for years. In the past couple of decades it became fashionable to send Christmas card – favorite family photo combination cards. These are especially precious.
Reading old Christmas cards
Reconnecting by reading old cards
Parkinson’s slowly robs many of those afflicted of the ability to make new memories. Not all who have Parkinson’s disease (PD)(parkies) loose their short term memory but Cheryl is in that group. This seems to be related to her organisational function as well. For her it is comforting to read old cards and think about those people and their families. If there is an annual letter she will read it to me and reminisce.
Cheryl brought the cards from her mother’s apartment after she died. When Elaine passed away from this life a couple years ago these cards along with other mementos and photographs entered our condo. Throughout the past couple years Cheryl has organised, reminisced and rearranged these. They are a comfort. Thinking about others and remembrance is her favorite pastime.
I am simply happy that it gives her pleasure and peace. The deterioration of her mental abilities is frustrating to her. Bit by bit she is robbed of her independence and the cruelty of the disease is the fact that she is aware of the deterioration.
It has been said before – Parkinson’s sucks. In this case it sucks greatly.
This cartoon is a double entendre. Double entendre is open for misinterpretation. Usually one interpretation is risque or at least rude in some fashion. One interpretation may be metaphorically a dog whistle. Clear communication uses none of these but as the cartoon below describes how jokes employ all of these techniques. And from Shakespeare, “Jesters do oft prove prophets,” in King Lear.
Language is nuanced. Idioms and usage depend upon the speaker’s and listener’s background and environment. As Parkinson’s disease develops it often robs the brain of the ability to detect the nuance and subtly of language and more succinctly the difference between truth and tease.
When people do not say what they mean, the listener is left with an unwanted task of interpretation and analysis without complete information. In conversation the listener may respond with, “To be clear… (the uncertainty)?” in order to understand the speaker. This is a fair question. It is not a challenge. It is a clarification. Questions left unsaid answered only by the listener may not be the intended thought of the speaker.
Direct speech can be interpreted as rude. Many speakers talk around a thought in hopes the the listener will hear that which was left unsaid and be less offended. Direct speech can be interpreted as confrontational but direct speech cuts through the Parkinson’s fog. Parkinson’s is not subtle.
It is hard to do each day with a Parkinson’s patient but if you allow yourself some time you can find optimism in the days ahead. This cartoon – published Jan 17 in the Cincinnati Enquirer – struck a cord in me.
Contagious Optimism
Stephan Pastis and his “Pearls before Swine” is a favorite comic strip of mine. I have not seen the alligators and neighbor Bob for awhile but the sarcastic rat and the naive pig are also favorites. In the gloom and doom of care-taking the characters provide both laughter and insight.
Enthusiasm, Optimism and Fear
Enthusiasm for life and all that it brings may be dismissed as naivete by some. Much like laughter it can be contagious. When I first retired from what I think of as my real career – earning a living – I had very little to accomplish with my day. I began to walk around the neighborhood. At the time we had a house in the Cincinnati urban area known as Pleasant Ridge. We were located on top of the hill very near where the topography starts to rise into the next neighborhood Kennedy Heights. P-Ridge is a very walkable neighborhood in Cincinnati proper with few people walking in it but as I walked more and developed several routes, all intended to remain on the top of the hill, I discovered in myself an enthusiasm for walking the neighborhood to enjoy other folks gardening efforts, the fresh air, the sunshine and simply being out.
I spent the first summer of retirement walking about three days a week. My walks became longer as I got more fit merely by walking. My favorite route took me through four city parks at a length of just over five miles. Occasionally I would chat with the guys mowing when they were taking a lunch break. (A handy feature of walking through a park is there are many picnic tables to sit at and simply enjoy nature.)
When I visited my family doctor during one of my twice yearly visits, he did not say hello, he blurted out – you have lost ten pounds! Huh! His optimism was contagious. We continued our conversation with various medical topics but at the end he encouraged me to keep it up. I have since discovered that I am a fair weather walker but I have not lost my enthusiasm. These days I am still hunting for a good route in our new neighborhood.
Enthusiasm breeds optimism. Optimism for one aspect of life spills over into others. Cheryl has some adjustments to her meds which seem to be helping her. Reduction in one. A slight increase in another. The result is that we are both sleeping better. It seems that things are looking up. Optimism.
There is a prayer — God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference. This could as easily read; Lord, you know all things, instill in me the optimism to accept those things over which I have no control; the enthusiasm to change those things over which I have control; the ability to discern those things. In many ways optimism about life is an acceptance of one’s life situation. What is in front of us is unknown. What is behind us is nostalgia. What is here and now is what we have to deal with and understand and make the best of. It is exciting to do that every day. Optimism.
Optimism gives us the courage to do what is necessary to finish the job. There is no manipulation in us by another force. Self reliance and optimism drive us to succeed. Failure is merely a lesson. Fear and pessimism are a capitulation.
Next time you’re found, With your chin on the ground There a lot to be learned… So look around
Just what makes that little old ant Think he’ll move that rubber tree plant Anyone knows an ant, can’t Move a rubber tree plant
But he’s got high hopes He’s got high hopes He’s got high apple pie In the sky hopes
So any time your gettin’ low; ‘Stead of lettin’ go Just remember that ant! Oops, there goes another rubber tree plant Oops, there goes another rubber tree plant Oops, there goes another rubber tree plant
….
Oops, there goes another problem kerplop
lyrics from the internet of all knowledge…
… An old song by Frank Sinatra — optimism and tenacity
Along with optimism for the outcome, one must be tenacious and follow through. Each day, take another step.
Giving care to a loved one provides one with the opportunity to show grace and grow grace within oneself. I believe this and each new day is a chance to help Cheryl and understand the gift that God has granted to me. That understanding is still and may always be a work in progress for me. Many of her recent and current symptoms include rapid switching between emotions. This journey is delicate and the stepping stones available have little illumination. Those steps have no outline. Nothing to make them stand out as the way to proceed. Moving forward step by step is tenuous and delicate. Feeling for lose stones takes time.
I tell myself, do not fear what comes today but be aware of what may come today. Do your best and remember God is in everyone.
Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is anewday. — Emerson
Cookies. Everybody likes cookies. Cheryl likes to make them. It doesn’t take the mental capacity to operate a seventeen year old access data base to make cookies. The hardest part is tracking down the chocolate chips that migrated to the back of the fridge under the leftovers. And you get to eat them. Even if they are not the best food, who cares. Cheryl is skinny as a rail and I am excited to get her to eat anything.
Everything is a big production. First we have to find the Toll House cookie recipe printed onto the back of the chocolate chip bag. Way back in the beginning of the pandemonium I had purchased a different brand of chocolate chips. Alas and woe is me — I had to return to the store to purchase the correct brand with the recipe.
What about this one I found on the internet from Betty Crocker? It looks like the low calorie version. See, only one cup of butter.
Go to the store and get the yellow bag she replied.
I left.
Here is the bag. There is even a bonus recipe for FAMOUS FUDGE. I do not care for fudge. My daughter does and when she makes some, I eat it. Perhaps I prefer that someone else does the cookies and fudge. I do bread, english muffins, bagels and coffee cake and other baking things. Cheryl does cookies.
Perhaps this is an Aha moment.
We also had rigatoni for dinner. Parkinson’s sucks but you can always make cookies unless you would rather make fudge.
As I find things that Cheryl will eat I try to add them to my repertoire of recipes. If I was a better planner and shopper my larder wouldn’t get stocked with random stuff. As it is random stuff is what I have, although, I have become better at shopping the freezer and the pantry and then looking for a nifty recipe. Thank the Lord for Pocket, Kitchen, Cooks Country and Betty Crocker.
Lately I have tried a meal subscription service called Hello Fresh. The first three meal kits – set up for two people – were Shepherd’s Pie, Buffalo Chicken and Flautas. The shepherd’s pie uses common ingredients put together in an entertaining way. The flautas do also. They could be paired with rice and beans which would make them appear as they would in a Mexican restaurant. The buffalo chicken breast was a more normal dish with mashed potatoes and roast broccoli as sides.
Over time dealing with PD we have settled into a weekly routine. Tuesday night is pizza night. Pre-pandemic we would go to a specific small locally owned pizza restaurant. During the pandemonium we carried out from the same place. Often Wednesday night is cafe night. We have a couple local restaurants – diners actually – that we spread our business amongst. We have added several over the years and are always on the hunt for new local restaurants. Sunday if we are not with family is a toss up. The other days not mentioned, I typically cook something.
It is not a rigid schedule. Remember the motto “Carpe Diem” or in a parkie’s case carpe momentum — I try to seize any good time that Cheryl is feeling and we might take a walk in a park somewhere and find lunch. Or we might just go find ice cream at a dairy whip soft serve. In either case the mid day calories will kill off any formal dinner idea I might have had. Sometimes we have breakfast for dinner.
Life is an experiment in many ways. It is also short and one can find that when you get to the end of it, all that crap you were so passionate about really was not that important. Be kind and try new things. Parkinson’s disease is what it is. It does not have to be debilitating. With a little bit of spice here and there it is actually edible. It doesn’t have to suck, sometimes it is chewy.
We have tried a new thing. Sometime during the past couple weeks I tripped over Hello Fresh. There are several of these around and as the pandemic pandemonium wears on I have cooked enough dinners that I am bored with my repertoire of recipes. Time for a new thing, new ideas and new spices. Time for someone else to select the menu for tonight.
Last evening I selected this one to start.
One small critique: both the prep time and cook time are optimistic. Perhaps you and your significant other are supposed to be in the kitchen together enjoying a glass of wine while assembling this fine repast. That could work.
The back side of the menu card
The back of the menu card has very specific instructions. I made one or two additions along the way. I used parchment paper under the chicken breasts. I put the broccoli in a bowl to toss with the olive oil. I have cooked many vegetables in the oven this way. It seems to me that the optimum roasting temperature is about 400 – 425 degrees Fahrenheit. (about 220 C) I set my timer to 20 minutes which seemed to cook the chicken breasts and Broccoli to perfection.
Three meals came boxed together
In this case six medium Yukon golds, a little bag of broccoli tops, out of the picture are two small chicken breasts, cheese, sour cream packets and seasonings. The little glass bowls are part of a set that I bought many years ago from Williams Sonoma. They have been pretty handy for 25 years or so.
You have to have oil, butter, salt and pepper.
There is a fair amount of shrapnel after the prep. The back row is waiting for the potatoes to cook. The bigger bowl with butter is waiting for the broccoli.
I have cleaned this pan enough that I use parchment paper often.
I have several of these cookie sheet pans. This one is about 11 by 17 inches. (A standard B-size drawing for all engineers.) The chicken crust has cheese in it so the parchment paper aids with clean up.
My plate
The portions seem just right.
Her plate.
I will have to work on my drizzle technique. I am more of a glopper.
Overall a good meal and a well planned cooking experience. A glass of wine while assembling this would have been great.
The parkie ate all her chicken, half of the broccoli and some of the mashed potatoes. She is not a big fan of onions and I wonder what onions taste like without out a sense of smell. The chicken has French’s Red Hot seasoning on it so it had some flavor for her.
Parkinson’s disease sucks but this at least was a successful dining experience.
I don’t know why that is. They just do. They are not sad but some are. Life long love is precious. Some say that it is rare. Perhaps what makes me tear up is the fact that many people do not find love that lasts for a lifetime. Perhaps an inner joy in me appears when I discover a story like ours. Perhaps my tears are tears of joy for, I cry at weddings and births too.
In the Fall/Winter Miamian (The magazine of Miami University) is a wonderful love story. Many Miami University grads met their life partners there while in school Oxford, Ohio. I imagine this is true of many university campuses but at Miami it is legendary. The story is about two people who met at a basketball game but did not know each other. They were set up by friends and began to date. During this time she noted that they could get a one hour PE credit for taking a social dance class. He did not want to do that but she insisted with, “If you’re going to date me, we will do this.” Later as they found out that they were in different sections of the class, she wanted to drop the class because it was not what she wanted it to be. He responded with, “If you’re going to date me, you are going to take this class.” The woman teaching the class allowed them to take their final exam together. It was a waltz. It was a metaphor for the rest of their lives.
Today she is suffering with Alzheimer’s disease. And he is her caregiver. As time progressed she needed more care than he was capable. As he was moving her into a facility to care for her better the pandemic struck the U.S. The facility was about to lock the doors to curtail the spread of the virus to their residents. Could he move in with her? Yes. He has moved in with her to the assisted living facility to be with her throughout this Covid-19 pandemic. They locked the doors to the facility to stop the spread. True love.
I wonder about our future with Parkinson’s disease. As time progresses I notice that my life partner struggles with many of the simple organizational tasks associated with day to day living. I have taken over many of these, most of which fall into the category of chores – laundry, cleaning, cooking and the like. I wonder if it might have been better for me to not assume some of these tasks. It is not that I mind doing them but I have taken many of the daily routine tasks away from Cheryl and she has little of the daily routine chores to help her organize time during the day.
As it is, I am able to keep up with daily living chores. But I cannot resist looking towards the future and wondering about what is next.
In addition to being a movement disorder, Parkinson’s seems to destroy in some people the ability to perform parallel tasks. Cheryl has filled her days that I have removed the chores from with a task that her mother used to perform for the family. Elaine used to keep track of and send an appropriate card to children and couples on the recognition of their birthdays and anniversaries. Intermingled with this was additional well wishes for illness, deaths and other life events. It is somewhat unique in her extended family as I have noticed no one else doing this. Facebook has the unintended consequence of reducing within a family notes, cards, phone calls and other intimate connections. (Perhaps a good new year resolution is to get off Facebook and onto the phone or email or snail mail to reconnect.)
I have digressed. The simple act of keeping an address list up-to-date and maintaining a calendar with birthdays, anniversaries, deaths or other dates is confusing to one who is loosing her ability to remember which pocket of her purse holds the chap stick she put in there moments before. I help her and have helped her a bit around the fringes but I am resistant to take over this task in its entirety. It is something she wants to do. It seems to be something she likes to do. It is something that frustrates her greatly upon occasion. It is something that derails her objective when she discovers an incorrect address or thinks she has discovered an incorrect address because she has remembered an address from “auld lang syne”. When this happens one must stop and wait for the correct address to appear from the email inbox – or text message stream which is a variety of the same thing.
This is merely an example of a deteriorating brain and I wonder if I will be able to keep up with her needs into the future. The husband of the couple interviewed in the Miamian recognized that he was unable to tend to her needs completely and decided assisted living was the answer. His wife has Alzheimer’s which is by my perception much more debilitating than the slow progression of Parkinson’s disease dementia but will I recognize when I am unable to take care of her on my own?
Our love is here to stay. Their love is also. I will always cry when I find a love story of two people devoted to each other for life.
Parkinson’s disease sucks. I hope I can recognize where it is sucking us toward.
Adjunct_Wizard 