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.
Punding certainly can be challenging to recover from during lucid episodes.
In our latest distressful activity, she has lost part of the equipment she uses for a pedicure. I have no doubt that she had it in her hand when she decided to do something after its last use. And it became “organized” somewhere. I may be wrong but we will see. She says that people move her stuff around and sometimes hide it.
Gone now to that special place so that it would not become lost.
Perhaps a trip to the local Walgreens will help. Maybe I will buy two kits.
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.
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.
Recently I read a book entitled – Dementia Reimagined by Tia Powell MD. It was a disappointment to me personally because I believe that I judged this book by its title. I was hoping for some sort of expert thoughts on how I can deal better with my personable anxiety, emotion and smoldering anger with Cheryl’s disease of Parkinson and her accompanying dementia. I was hoping for; when this comes up, do this. Life is not that easy but my engineer training wants to make it so.
Dr. Powell’s book is a good argument for changing the way government programs, insurance companies and the like perceive and fund help for those with dementia. I know that the funding albeit private or public is screwed up. A few months ago I met with a lawyer to discuss end of life issues especially since I felt certain that Cheryl’s chronic illness would eventually bear a heavy toll on our family finances. He asked why I still lived in Ohio.
All states are different.
No Help There
That does not really help me. These tips on dementia (copied from a website somewhere) do seem to be useful:
Always approach from the front. – or do that as much as you can. When I first read this it was not meaningful to me but I have noticed that Cheryl startles easily. Her startle reflex shows itself at seemingly random moments. If we are traveling somewhere in our car, she will react to other drivers with jerky motions or a surprised little noise from her lips. I used to point that out to her and she reacted with both embarrassment and a little anger. I have learned to ignore these little things but it is hard for me to do.
She no longer drives a car having given up her license several years ago.
I have noticed that she will jump if approach her while working on something in her office which causes her to face away from the doorway so that she does not see me coming. I am not moving quietly when this has occurred but I may be mistaken about that idea. I may be more stealthy than I think myself to be. We are both older. Our hearing may not be as acute as in our youth.
Watch your body language and tone in addition to the words you use. – frustration or surprise at the immediate situation may easily be interpreted as anger. This is the hardest concept for me personally to deal with. I am concerned for Cheryl’s safety and I also hate to clean up messes. I apologize a lot and she apologizes a lot for making a mess even though I tell her that no apology is necessary.
I recognize that I am perceived as angry by her when one of these situations occurred. The aweshit reflex is strong in students and practitioners of engineering. So far I have been able to tone it down to oh-poop but it is a work in process with some small progress. I keep telling myself it is anger with this disease and what it has taken from her. I cannot tell you if there is truth to that statement but I keep repeating it to myself quietly at night when a combination of sun-downers and dreamy illusions and hallucinations creep into her perception of the world.
Sometimes I merely lose it, however. I can be mister cranky pants in the middle of the night.
Smile and wait until they acknowledge your presence before touching them. – Hugs are always welcome but Parkinson’s patients may be unsteady, so be prepared to steady her and accept some weight change. Hugs are always smoother from the front than from the rear. (see startles above)
Regardless of acknowledgment touching, hand holding, hugging are preferable to distance. The combination of Parkinson’s and dementia are frustrating, depressing and scary. Cheryl has expressed this to me often in moments of perfect lucidity. Those moments are still there. Savor them like fine wine or life as it used to be.
Validate their point when they are upset even if they are wrong. – and be aware that it is not important to correct anyone’s perception of things. Never start a response with; you are wrong, dear. … and continuing with the rest of it.
Let’s face the fact that “you are wrong” is a manifestly stupid way to start with no dementia present. Relax and take a deep breath and decide between two things, is it important to correct her perception or do you merely have a need to be right. Try, yes, that could be true… and go from there if concepts are way off and you want to help her find the way back. Or just ignore it, after all, her memory is not very good any more. She will not remember that you are right but she will remember that you angrily corrected her.
Say you are sorry at the first sign of their frustration to keep situations at a minimum. – I say I am sorry a lot because I am sorry that I tread on her heart. This disease is frustrating for us both.
Cheryl sees a nurse practitioner a couple times a year. Maureen is pretty practical when it comes to nuanced care partnering. These are her words;
I get lots of questions on how to deal with dementia. I could give you a list of resources to look up on the internet, workshops to attend, books to buy. All of that takes time which most of us have too little of. A great caregiver website, caregiving.com, offers these 5 tips for dealing with dementia.
PRACTICE PATIENCE – This can be incredibly difficult to do. Try to remember when you were dealing with your children when they were young, especially the toddlers. You probably had more patience then, than now. Remember those days of taking a deep breath before saying something. With practice, it will get easier.
PROMOTE PHYSICAL HEALTH – This is for both the care giver and the care receiver. The care receiver can benefit from practicing chair yoga, dancing, gentle stretching. Since the pandemic there are abundant resources on You Tube which can be helpful for both the care giver and the care receiver. A walk outside in the fresh air can help clear the mind for the care giver and give a person a brief respite.
USE PHYSICAL TOUCH – Touch is a powerful form of communication and connection. It can also be a valuable expression of reassurance particularly to someone living with dementia. All of us need a hug now and again. My own mother would remind me I forgot to kiss her good night!
FIND RESPITE – If you’re focusing most – if not all – of your time, energy, and resources on caring for a loved one with dementia, you may find you cannot sustain doing so over the long-term. With proper self-care, you can relax and recharge, manage caregiver stress, and become a better and more effective caregiver. Consider sitting on the porch and reading a book, a brisk walk, a cup of Starbucks, an ice cream cone, a massage, a warm bath with soothing scents. These things need to be done regularly in order to maintain your own health.
REDUCE WORKING HOURS – If you are still working full time, care giving becomes a second full time job. Consider scheduling a meeting with your human resources manager to propose temporarily working from home, flex-time opportunities, job sharing, and/or even paid leave due to your caregiving demands. You may be pleasantly surprised by the accommodations your employer is willing to make.
Maureen is a wonderful practical person. (I also wish she was not in our life because then there would be no disease of Parkinson or dementia.)
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.
Cheryl does not drink coffee. She never has. I do. When I make a pot of coffee I ask her in a teasing fashion, do you want some coffee? I made a pot. She says, nope. No coffee for me thanks. it is a conversation we have had for fifty plus years. I love her. Sometimes she will ask for something else; tea, juice, Coke and I will get that for her instead. She seems to be back in this time and place now. Earlier she was not.
This morning that seemingly innocent exchange stuck with me. Her early morning sun-downers syndrome was staying with her and the sometimes accompanying hallucination was staying with her. It made me nervous. I had purchased a couple apple strudels from Marx Bagels the day before and kept them aside for a breakfast treat. Lately she is only interested in doughnuts for breakfast. That part of the breakfast was okay but she kept offering some to someone named Tim. Tim who? I asked as I had not heard that name before. Tim Fiebbig, I go to school with him, she said.
She thought the strudel was okay but she was hoping for doughnuts. I told her that if she really wanted doughnuts I would get some but do not leave until I get back. I zipped out to a nearby UDF for a couple doughnuts and some coffee. Back in a record fifteen minutes with three doughnuts and fresh coffee. While I was gone she sat with Tim in her office to chat until the doughnut man returned. She broke one up into little pieces and offered it to Tim.
In an effort to understand where she was in her mind I quizzed the siblings. This was (is) an elaborate illusion for Cheryl to set up a chair in her office so that she could converse with Tim her imaginary friend from her childhood. She did not seem puzzled that he was in her office. I hoped that it would pass and left her to talk to Tim for a bit. After a conversation of several minutes she came back out and sat with me to watch the morning not-so-newsy news program on CBS.
It is later in the day as I write this and she is still struggling a bit with the images and memories. Those seem to be easing and she went to shower and put on clothes. She seems to be back.
Some is, no doubt, grief caused by family circumstances. Paul Welch, our son-in-law’s father passed away yesterday. He had Parkinson’s disease/ Lewy body dementia also. An incredibly aggressive version apparently because he was only diagnosed about two years ago.
As we head down this road of Parkinson, it is helpful for me to understand what she is remembering. I am often unsure of what to do with that information. Sometimes I turn it into a conversation about that time in her life and let her reminisce for a bit. Sometimes it works and she gently realizes that she is reliving a memory. Sometimes it does not work.
It is a twisty-turny journey. My training many years ago as an engineer has been poor preparation for this time in my career. Spiritually it is a challenge. Engineers want to fix things. This appears to need a total redesign by the Chief Designer.
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
These days Cheryl is certain that we are not home and wonders when we are going home.
In the background she knows she is home.
But maybe not. Cheryl has lost most concept of time. Calendar time, Day of the week, hour of the day, time until the next event, how much lead time to get dressed or ready; all of these time conceptions are gone. She becomes angry with me reminding her how much time she has left. Maybe I am doing it wrong. She talked (and talks) in implication and inference but my conversation is direct. When she says she is going to do something I assume that she going to do it and I will reminder of her conversation, even help steer her toward her goal that seems to anger her sometimes. It is not my intent to anger her but merely to remind her what road she started out with and keep her on it to completion.
Little girls seem to come and go. The woman who takes care of the little girls seems to come and go with them. Others seem to move her stuff around. And then daylight returns.
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 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.
Adjunct_Wizard 