Love and Life

Recently I Read a Book on Dementia

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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.)

Carpe Diem.

Chores and other Things

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Where do we get our

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.

Carpe Diem.

She Almost Fainted Today

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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.

Carpe Diem.

Too Much!

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“I appreciate your help but sometimes I just want to be left alone”, she said to me today.

I suppose I do get too much like a helicopter parent.

She could have become more angry and told me to “Back off!” but she did not.

I stepped over a line that I am still looking for.

Carpe Diem and learn.

There is a subtle difference between caregiver and care partner. We seem to be on the cusp of that some days. So I felt it was necessary to find back Edie’s prayer modified by me and read it again.

… so much to learn and as I write this Pink Floyd is singing “Comfortably Numb” on Alexa nearby. Perhaps I have become numb or non-listening lately.

Seize the moment to listen.

Teasing. Do You Want Some Coffee?

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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.

Carpe Diem.

I Often Read Maria Shriver

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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

Carpe Diem.

It takes Time

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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.

Carpe Diem.

People Are Still Dying

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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.

Carpe Donut Sunday Diem.

A Third of the Way

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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!