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.
Stephan T. Patsis is a favorite cartoonist. His signature work, “Pearls Before Swine” is the cartoon in the comic section of the local newspaper that I read first when my wife hands me the funnies and says, “There are some funny funnies today.”
You have to choose to be happy. The goat who is somewhat intellectual and thought provoking tells rat. An absolutely true statement from a smart goat. One does choose to be happy and no one else can make that choice for you.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy. – Desiderata by Max Hermann
The title of this blog post is the name of the poem posted in a discussion group. Zella wrote earlier this week… “I thought my husbands poem might be suitable for Parkinson’s Awareness Day!” To which LAJ responded… “I thought it was going to be about a caregiver who thought their husband didn’t like them anymore, […]
As Sue thought, I thought this was going to be about the care giver. It is not. It broke my heart. I have watched Cheryl struggle with opening many things. And I heard Parkyboy talking in the background.
beliefs of simple things, such as, whose job is it to do this chore or that chore. Mowing the lawn, for example, is it a male or a female job? And why do most people grow grass around their property that is not native to their part of the continent? From my perspective it is a male chore to mow the lawn.
As a boy – it was mine
How do things like this get started? I have always – at least in my memory – thought of mowing the lawn as a man’s job, chore, duty. No doubt dating to my childhood when it was the chore I was assigned somewhere around the time my brother graduated high school and left for the Massachusetts Institute of Technology. I would have been about twelve years and certainly tall enough to push a lawn mower and not injure myself. I have no memory of whom in our family mowed the weeds before me. I assume it was my older brother but I have no memory of watching him do that task but he probably did. He is gone now and I cannot ask him.
It was my chore to keep the estate spiffy and shipshape. Did I like it? Indeed I did not.
As a man – I thought mine
Over time things get ingrained, ground in, always assumed. That is your job. Just do it. When we bought our first house I purchased or somehow obtained a ultra low end lawn mower. It was a tiny back yard and much was given up to english ivy. Why I ever decided to remove much of the ivy and turn it into lawn is beyond me now but at the time we had one child with another on the way so a place for the kids to play was probably the motivation. I also built some garden boxes, a sand box for the little people to play in and the neighborhood cats to crap in, a raised vegetable garden area, a strawberry bed, a swell picnic table and a rabbit hutch with rabbits. It was a busy six summers there. I was not yet thirty years old. We were fertile. We had three children when we moved to the big house.
I had my own schedule when it came to maintenance items such as mowing the lawn. Building the lawn is way more interesting and fun than mowing it. Occasionally she and I would argue until I discovered that she actually enjoyed mowing the lawn. She would mow it and I would assume incorrectly that she was trying to show me up. Our first lawn was tiny and I had an electric mower with a 100 foot long cord. She loved it and she could do it during nap time. It was quiet. I gave up the maintenance duty on the lawn.
As a father – my son’s job
When we moved to the new big house with the new big lawn and the mostly dead American elm in the back I bought another 100 foot long extension cord. This worked for awhile until it became too cumbersome and I gave in to purchase a low end gas powered mower from a big box store.
The elm was removed, another vegetable garden was installed and a cherry tree added to round out the crop yield. The kids were growing rapidly. She and I decided that it would be good for the kids to have some responsibilities around the homestead and its maintenance. Some jobs more important than making sure that the two freezers did not contain too much food. We gave our middle son the duty of mowing the lawn and he seemed to like it initially. I eventually gave in and bought a riding mower and he liked it even more. There are many fine stories to go with the riding lawnmower of questionable manufacture.
Household chores in our new life with PD
In our current life with this disease of Parkinson we try to avoid having it be the center of our life and rule over all that we do but some days that just seems impossible. Some days the distraction is insurmountable but over time we have come to grips with the fact that it is simply more efficient for me, the husband, the father, the care partner to assume most of the regular chores and Cheryl can do ones that she deems need doing and she is up to the task that particular day. Some days she does nothing other than survive. Some days she busies up her day with several little things which takes a toll on her physical well being and the following day is a survival day. I like routine so I have selected certain days for certain major chores.
I have developed three laundry group days. Monday is wash-the-bed-sheets day. Wednesday is wash-the-towels day. Friday is wash-the-clothes day. On Friday I split the wash into loads that make sense to me not her and we have sparred a bit about what is in each load but we do not any longer. I believe she has lost interest in laundry and its routine. On wash-the-clothes day I also look at the checking account to be assured that we are not getting too rich and do any book keeping and bill paying. Over time I have put many regular expenses on automatic.
On a daily basis there are a myriad of other little things that I do to keep things rolling along. It now seems trivial when I reminisce about my anger with her stealing my thunder and mowing the lawn without telling me. (Yes, that was the source of my once ill-placed anger.) These days I look forward to being with her and caring for her.
Morning routine includes dressing the bed. In our other younger life I never did this. In this life I have made some adjustments to suit me since it is principally my daily job. Evening routine includes making dinner and when I am out of gas or merely think we are isolating ourselves too much we go to a restaurant and let them make dinner.
Cheryl has had difficulty lately with an evening routine that allows her to wind down and sleep through the night. We have been adjusting the timing of her evening meds. Because she often complains of taking so many pills, we have adjusted her dosage slightly and on her nurse practitioner’s recommendation we have adjusted the timing of a med that is intended to help her sleep. She takes that about thirty minutes before she heads to bed.
These slight adaptations seem to be working for her, not always but for the most part. She seems to be sleeping better and generally through the night except for the occasional bathroom trip. In addition she occasionally makes the bed – well twice so far – because I think she feels good enough (rested enough) to do that little chore.
After the second time I thanked her for making the bed up and got push back in the form of, I know how to do it!
AHA – store the little victories away in your heart for later. Keep your mouth shut if you are unable to make your praise and thanks not sound demeaning. And do not take it personable when she snaps at you, for at that moment she is there as she always was before this disease of Parkinson.
And never raise your volume, she will think you to be angry whether you are or not.
Every morning at 7AM the extremely LOUD, BRIGHT AND ANNOYING alarm clock sounds its happy tune to remind us that it is time for Cheryl’s first dose of various meds. My job is to get up and find them. I get a glass of water and bring them back to the bathroom. All of this disturbance usually awakens Cheryl. I help her get up and shuffle into the bathroom to the toilet and then to the counter to take her meds.
Her fingers may not be working well in the right-after-get-up time. At 7AM and a little, she dropped one on the floor. I got her to take the rest of her meds and eased her back to bed. I laid down too after finding that the little white pill she dropped was to combat her orthostatic hypotension which is low blood pressure associated with Parkinson disease. I put this pill with her vitamins that she took later while eating breakfast.
She takes midodrine to combat the hypotension. Generally it seems to work. This morning when she took it separate from her other meds but with her vitamins and shredded wheat, she became lightheaded and fainty feeling. When one checks out the link I have provided, one finds a wearying array of side effects, all of which or none of which are associated with other meds that she takes.
This morning she fainted while I was talking to her. She was looking gray in the face at the time. I helped her to the floor and propped her legs up on a chair. I sat on the floor with her for a bit until she felt like she could sit up. I outweigh Cheryl by about a hundred pounds or so and to me she feels pretty light. I also forget that we are the same age and that means neither of use is twenty-two anymore. Nevertheless I help her up by positioning a chair nearby and she pulls herself up or I get behind her and lift her straight up with my legs. I probably should not lift her but she really does not weigh much in my mind.
While writing about these little happenstances in our life with PD I run across a world of information about what to do and who to call. This website (https://seniorsafetyadvice.com/about-us-2/) is a wealth of information.
It has been awhile since Cheryl fainted while eating breakfast. A couple years ago it was sort of common and occurred maybe once every other week or so. It was so commonplace that I staged a pillow from our couch in one of the kitchen chairs to put under her head for a bit while she was laying on the kitchen floor recovering. Thinking back on it, it crept into our lives so gradually that the two old people living this Parkinson life thought little of it other than, oh crap another new thing to deal with.
A casual mention in conversation to the medical team in a visit a couple years ago caused Maureen to give me the “stink” eye look which said to me, when were you going to mention this? I realized fainting is not a good thing or even a thing that we should merely deal with over time. She gave Cheryl a prescription for midodrine and instructions to take two when you get up and two more during the day spread out. Later this was adjusted to one in the morning, one mid-day, one no later than three hours before bedtime. I now had a use for all seven boxes of our meds organizer.
I found this a couple years ago on Amazon. Ours has black lettering and I created a chart to stick inside the lid.
A pretty long story but in addition to this little blog of mine I have started a little log of anomalous activities and the surrounding circumstances. The doctors and nurses are not looking at Cheryl every day. That is on me.
She writes uplifting and spiritual thoughts in a weekly email newsletter she calls “Sunday Paper”. Today she writes about changes in life. She struck a chord in me but probably not in the way that she intended.
This Parkinson thing is a dramatic change in our life. Maria uses as her focus a friend that is moving far away and talks of pivoting toward the future. What struck me is Cheryl is moving away inside. Not purposely of course but this morning the conversation centered on location and space. She believes inside her head that we are far away from home. She asked are we going home today?
Home is a concept different to everyone. I told Cheryl as I always do when she asks this, we are home. We live here. Sometimes I go into more detail and tell her when we moved. She has a puzzled look on her face when I tell her those things. Sometimes I regret moving out of our big old house in Pleasant Ridge when we have these conversations but I have no basis for regret. She is confused now and most likely would be if we were still living in the big old house.
To me home is not so much a place as a situation. If one “googles” home the famous web search returns thousands of pictures of various houses in various places but a building is not home. Those houses may or may not be home to others.
Cheryl is where I am home. Our life was unimaginable to me when we got married 51 years ago.
On this snowy slowly warming February Sunday I am reminiscing about life and home and the twisty turny path we all follow though life. And that is my concept of home.
She sometimes thinks that we are not home. I am as long as I am with her somewhere.
A boy, a fox, a mole and a horse – great book for meditation
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.
It is now a third of the way through January. Cheryl and I went out to a small diner on the other side of town to visit with one of her life long friends.
They call themselves the “Clementines”. They attended grade school together and many attended the same high school. They number about a dozen and they used to meet every other month at a local pizza place to chat and reminisce and catch up.
Cheryl was the the original organizer of this group and convinced the others to come and chat. She teased many of them into it at first. She kept the friendships alive. And then Parkinson’s hit and took away her organization and her cognition.
At first she hid it well. It drove her crazy that she might forget something or someone. The computer, something that she had used throughout her working career as a database analyst, something she wrote code for to extract information, became a confusion. I (behind her back) asked one of her friends t take over the organizational task. Kathy stepped up and did it.
Covid struck and they moved to Zoom. I set up the zoomeetings for a bit because I had a corporate account with the community college that I work at part time. Kathy got her own license because she was using Zoom to visit with family.
Today we went to lunch with Marilyn who was unable to zoom a few nights ago. It was a wonderful lunch. Cheryl was able to talk to someone other that me in person.
Tonight for dinner I made oven fried chicken and roasted brussels sprouts with carrots. But for dessert I made Apple Oatmeal delight which is a recipe from BookBakeBlog’s site pages. It was pronounced good! Write that one down!
Apple Delight (not BookBakeBlog’s name)
Life is a journey. Enjoy the apples (and other fruit) were you find them. Carpe Diem!
It was a miserable eve. Cheryl has had her meds adjusted a bit to help with creeping dementia issues. The doctor has been slowly increasing the dosage to creep up on the optimal dose. The most common side effect is nausea and vomiting. The new prescription is at the optimal dose and it appears Cheryl cannot tolerate it at that level. She has been sitting on the bathroom floor on and off for most of the afternoon.
As she was building up to this dose for the past several months, I expected to see some behavioral changes. I have not. As the situation got worse I terminated giving this med to Cheryl.
But last night (New Year + 1) was very difficult and very different. I thought that perhaps this drug did not work for her but it did reduce and eliminate the strange compulsive behavior that she exhibits. She also became delusional. She was certain I did not belong here.
On the next day, Monday, I called the doctor’s office and got her nurse practitioner on the phone. It is hard to explain how excited I was to have someone call back that knows Cheryl and her condition and has seen her on a regular basis. I explained what Cheryl was going thru and that I had discontinued the medication to relieve the symptoms. The NP recommended that I adjust one of the meds she was already taking with no ill physical effects and perhaps Cheryl would sleep solidly through the night and do better the next day. It worked.
Still searching for clues at the scene of the crime (Joe Walsh).
It’s a new day. Today is football day. Seems like everyone everywhere is tuned to some kind of football game. It used to be, many years ago, a time to visit our in-laws. Our niece’s birthday was January 1st. She died a year or so back not from the Covid dilemma but from other health issues. She had not been well for some time. We have not celebrated her birthday for some time. Families are complicated and estrangement is often part of the complication.
It’s a new month. January is often cold but it seems to take winter some time to get started. This January is no different. It is rainy and poopy outside today and the temperature is expected to drop into the upper teens overnight. I am so glad we live in the times we live in. It will not be necessary for me to add coal to the fire for overnight nor will it be necessary for me to huddle underneath a buffalo skin.
The current federal administration authored a congressional bill referred to as “build back better”. The previous administration had a motto of “make america great again”. Both of these are ludicrous. Both imply that there is something not quite right with now. That is absurd. Nothing is wrong with now. We are not heating with coal or huddling under buffalo skins. Slowly, ever so slowly we are converting to electric powered transportation.
Now is not perfect, of course, but it is greatly better than what was. We often think what was is better that what is. Still searching for it, clues, that is. Try to enjoy and be in the moment.
It’s a new year and thank God for that.
Resolutions? Yep. Do better at living now not ago. Try to not get fat living now.
Many gather at this time of year. The plan B gathering area for Cheryl’s family is at our house. It was supposed to happen at her brother Ken’s house. Ken’s wife is ill but she is on the mend. The dinner count is down by two. Cheryl’s sister Debbie also cannot attend. Sometimes grand kids sports get in the way as families grow. But all is well. Our table sits eight comfortably and we now only have five. Hopefully there will be leftover cherry pie.
Children visit their parents’ home. Grandparents visit their children’s homes and when they leave the mess stays there. In this grandparents’ home the gifts are all wrapped, sorted and ready for transport. Santa is unsure of the number of stops required this year. He is awaiting further instruction from the other Clauses.
Traditions abound and new traditions are made. Sometimes big brothers help little brothers. Zachary is the smallest one in our bunch. He has only had four orbits around the Sun so far. It looks like he is being mentored on decoration hanging.
Even some as sickness creeps in and some cannot visit. Zoom and Face-time is meant just for this situation. What a wonderful technological world we live in for a short time.
Adjunct_Wizard 