Dementia and Daily life

No matter how slight in the daylight hours her dementia which is characterized by memory loss, confusion, inability to understand implied ideas (The garbage is getting full vs. Take out the garbage.), following instructions (recipes), calendar time even when displayed (Monday, October 10, 2022 at the top of the newspaper) and random association of objects (old birthday cards paper clipped to new magazines), it seems to affect every minute of every waking moment of her life. I struggle to keep her informed about what is happening or going to happen soon. It is stressful to remember my stuff and her stuff too.

Today’s topic which started at 4:20 AM this morning was a problem with the computer. Which computer I do not know but I assume it is the on in her office. It was stuck working on some background process and that was clogging up the workflow. If I had to guess it was some Norton Defender thing going on tying up resources. She has a Windows 7 operating system and takes very little to befuddle the processor. None of this happened by the way. It was all a dream that popped her out of bed at 4:20 AM. It popped me out of bed too.

After a little discussion and a trip to the toilet, I got her back to bed and I made a pseudo-check on the computer and reported to her that it would be okay in the morning. It was running a background cleanup process. She should get some more sleep and wait.

When these episodes happen in the middle of the night, I worry about her vivid dreams. She called it a nightmare probably because in her dream she had to get something done quickly. The computer was not cooperating. Lately she has had several discussions about work projects for the church and as memories about her working career. Navigating the discussion is tricky when I point out that she no longer works beyond our little condo. What few little officey jobs she did for the parish evaporated with the do over of the parish hierarchy when the Catholic Church in our area discovered they had too many buildings and not enough people.

A lot of old files and booklets still exist in her office. Lately I have been closing the door to her office at night and reporting to her that it will keep the kiddos out of her area overnight. She usually says, “Good. Thanks.”

I did not speak about the computer although I did point out that she was sleeping pretty soundly when I woke her at 9 AM and she remarked that yes she did not get up at all overnight. (She truly was dreaming when I talked to her at 4:20 AM.) I affirmed her comment and helped her get up. I did not mention 4:20 AM. (Am I harping on 4:20 AM? Yep.)

After she ate her cereal and as I was passing through the coffee pot one more time, she remarked that she hoped the computer was okay. I did not expound on that but suggested she should check later when she had a chance. She did and reported all was well.

Carpe 4:20 AM Diem. (I could not resist.)

Hallucinations, Delusional behavior, The presence of others = Caregiver frustrations

Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.

Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.

Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.

Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.

I did not have an answer suitable for her to be okay with so I kept my mouth shut.

Sometimes in the moment seizing nothing is a good idea to maintain namaste.

Carpe Diem.

Surrounded by Wonderful Loving People

“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.

It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.

In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.

From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.

Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.

Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.

Family …

My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.

A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.

Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.

As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.

On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.

Carpe Diem.

Bump and Run

Interestingly to me anyway yesterday’s plan works today.  I suppose that overtime I will come to understand that what I want her to do and the speed I want her to do it are not hers so it can never be.

Today’s class is sitting cardiovascular motions.  I features the Beatles and the Righteous Brothers as accompaniment. Nice.

Spirit in the Sky

Carpe Diem.

More Things that I Have Learned

  • If you are going to try to get your PwP to speed up to go somewhere make sure you have your act together first.
  • What ever schedule that you have in mind is busted, so, move on.
  • Some people sleep in occasionally. It is not apathy, just the ordinary need for luxurious life.
  • “Church” is merely another name for going somewhere. Just repeat the answer to: Where?
  • Do not panic when she asks where we are sleeping or asks if we are going home tomorrow. Tomorrow she will not remember.
  • Read her email once a day.
  • Casually look in her disorganized office once in awhile to get a feel for where things could be when “I can’t find my…” comes up.

This is a continuing list and when I stop to think about it and all the things I have had to learn and do it makes me smile. Frustration creeps in sometimes but I think that most of the time I can push it away. The times that I cannot are about what this disease has taken from her.

Carpe Diem.

Decision Making is Hard

In Cheryl’s case,  decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?

Parkinson is a big enough trial when it is only a mobility issue.  When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.

Today is the date of the Sunflower Rev it up for Parkinson’s symposium.  It is an information and exercise presentation by UC Health in Cincinnati.  And we are getting a late start.

Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.

The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.

Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.

In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects.  The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.

A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out).  Social gatherings are important . One can never give up.

There are things you can do that will make things easier like, no button down shirts.

There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.

But it was worthwhile going.

Carpe Diem.

We had a Moment

It was early afternoon. It was about an hour after she had taken a dose of meds. She was standing at the kitchen sink. Her dyskinesia was noticeable. Her conversation was anxious.

She was worried about what was going to happen with the occupational therapist … I think. I tried to convince her to sit and rest for a bit until we had to go there.

I went to putz in my office. Alexa was playing Rod Stewart old standards from his Great American Songbook album. Time after Time came on “… so lucky to be loving you” a waltz or foxtrot. I asked her if she wanted to dance. The song was a favorite of ours. I turned it up a bit and coaxed her into the space between the dining and living area. She put her arms up around me and I did the same. We hugged and danced in place.  She burst into tears as some Parkinson’s emotions took over.

Me too. We took a moment to feel a little sad about our current situation. We took a moment to let the emotion wash over us. At that point in time life was overwhelming. We had to let it be overwhelming in order to move forward with life some more. It is okay to lament life for a bit.

The song ended and we sat in the living room. Rod started singing, “I see fields of green, red roses too…” She watched some of the pictures go by on the Frameo that Anna gave her a couple years ago. She cried a little bit more and enjoyed the nostalgia. And then we were ready for life again.

an earlier dancing opportunity

Carpe Diem.

Donut Day

It was going to be doughnut day and I forgot. Alas. Woe is me.

Going down this sometimes bumpy, sometimes smooth road of Parkinson, I hunt for ways to make memories. Happy memories. You have to see how Cheryl’s face lights up when there are doughnuts for breakfast. You will know then why getting up early to go find doughnuts is a special memory. Cheerios will not go nearly as far to creation of happiness.

Skeptics will report that doughnuts are not good food. Some will even report that doughnuts are bad for you. Others will discuss yogurt and oat bran and report their studied benefits to those I say malarkey, nonsense and bovine feces. Nothing, absolutely nothing compares to a lightly textured butter enhanced wheat dough gently lofted by yeast plants straining for full growth finished in deep oil at the proper temperature and upon proper cooling, coated with a just-right glaze of sugary vanilla. (I know you can taste it. That is because I am eating one while writing. Darn, sugar on the keyboard.)

I offer only condolences to those with celiac disease. Gluten free donuts are a sad replacement. I offer condolences to those who are lactose intolerant also for they are doomed to enjoy margarine and vegetable oil.

Nevertheless as we returned home from our dinner at a diner and a walk around the park last night, Cheryl expressed an interest in having doughnuts for breakfast. I agreed but at 8 PM those are hard to find and when you do there is little selection. I said I would get up early and go find some. Alas, this morning that thought had not remained with me overnight.

Cheryl got up a little after 8 with no help from me. I heard her stirring in the bathroom and went to be an annoying helicopter care partner. All was well. I asked her what she wanted for breakfast to which she replied, doughnuts! I was initially crestfallen as I had forgotten our discussion. I put on clothing and went to our local IGA to see what was still available in their Busken Bakery cabinet. Fortunately for me the selection still contained kettle danish which is a favorite of hers. I will eat any combination of sugar and wheat dough. No favorites for me, although, my grandson once brought me a maple iced long john which a strip of bacon on top. Yummy. (When you are in Chicago next time find some “fried dough” — fattening but exquisite.)

The day was saved. The crisis was averted. Dip-able things appeared next to my coffee. Perhaps I will make a new pot.

Carpe Diem.

Old Married Couple

It occurs to me that old married couples have heard each other’s stories many times. Idle pleasantries between acquaintances and friends usually lead into a story about some past experience. It is harder to do with old married couples. They have heard the stories. Often they both participated. Aging and PD memory loss have changed our conversation about trips, children, childhood, food, children’s sports, many things.

I am a pretender often. She may forget who I am as she is talking. She may forget I was there; an hour ago, a week ago, a decade ago. I might forget I was there a decade ago. She wants to remind me of someone else from her childhood, someone I should know.

I work on my small talk with her because she will find a story from her childhood and it is calming to her to tell me the story.

As I think past all of that and how I can help and respond to Cheryl I still worry when she says to me, ” I’m ready to go home now.” She does this near bed time.

Lately she seems to merely mean that she is tired and wants to go to bed and rest.

Carpe Diem.

Are Birthday Cards Gone?

Anna was looking for ideas about what to get her mom for her birthday in May of 2022. I suggested a box of blank cards to send for any reason. Cheryl has always kept greeting cards that are sent through the mail for fund raising purposes from various religious and chronic illness organizations. Some would be sent to her mom when Elaine was still alive. Some of these are still in residence in Cheryl’s office.

There is a small green box shaped like an old country mailbox near the phone in which these cards used to reside. They are no longer there but are spread here and there amongst other paper and chaff in her office. I had hoped that Anna’s present would take up residence in the mail box topped box but that did not happen.

In mid-April of 2022, I suggested that she should make a list of the May birthdays and we would make a trip to the store to get some cards to send. The idea of making a list is hers. She readily agrees with this idea but as her Parkinson took hold of her cognitive centers she is unable to do this.

A few months back her engineer husband suggested that rather than a list she should write each name on a post-it note and as she selected cards in the store, she could put the post-it note inside and she would know who the card was for. Later when she wrote the card and addressed the envelope she could note what date she wanted to mail it and stick it to the front when she sealed the envelope. That solution met resistance because of the NIH factor. (not invented here) But over time she adapted it to her way and used it for awhile.

In April I helped her make a stack of post-it notes with names and we went to the store for cards. Few of those cards were ever mailed to anyone.

In May I waited to see if there would be a panic mailing of cards. May came and went.

Our daughter-in-law Mavis’s birthday is the 1st of May. Hers was the only May birthday card sent. How do I know? In a previous month there was panic as Cheryl realized she had forgotten where she had put the stamps. I now keep track of the stamps. I often have written about her punding. Sometimes she will pund stuff into obscure places. We all do this – not punding – but set things down in obscure places. With PD it is merely harder to find out where it was parked. The stamps turned back up a week or so later after I had bought a new roll.

Cheryl’s birthday is in May also and her brothers and sisters often gather for a “sibs” dinner to celebrate such an event. These pictures are from that gathering at Gabbey’s cafe.

The birthday cards acknowledgement of the family birthdays seems to have been forgotten. It is probably another nuance to he loss of sense of time, calendar, day, week. Our son Scott’s birthday is the 6th of June. We were at our daughter Anna’s house on his birthday. Anna asked her mom whose birthday was today. Cheryl looked at her with a confused look.

I felt sad about several things. I have been writing significant events on a white board that I put on the table each morning so that Cheryl knows what is happening this day. I have not been writing down birthdays. She forgot Scott’s birthday. Of the few cards that I think she should send we forgot to send one to our son. A few other sad thoughts drifted through my head. But most of all I realized that she had lost the birthday card duty. She had forgotten it. This is a long time thing that she did for our family and her mother while Elaine was alive. This is a longtime activity for her. Her short term memory has been off or fading for sometime. I had gotten used to the fact that it is necessary for me to remind her of events constantly. (It is annoying but over time one gets used to it.)

Christmas, birthday, invitation, funeral cards are all gone. An actual paper card with a USPS stamp is how Cheryl learned to acknowledge things. She never adopted Facebook or any other social media platform for those.

Parkinson is a series of small setbacks. Sometimes it is so gradual it merely seems like life going by. It is easy to attribute all behavior changes to Parkinson, after all, he entered our lives about a dozen years ago and has made dramatic changes to how we now do things. Lot’s of older folks develop an apathy for life. They do not need Parkinson’s disease to help them. It is a kind of disinterest in life. Doctor’s have recently discovered this. Geriatric doctors ask specific questions about it when visited by their patients.

This topic about the birthday cards occurred to me in early May when no panic mailing of birthday cards or frantic searching of the black book or of the old address books that we had in our old house or her mom’s address book. It was a sudden occurrence in her behavior.

Could I be watching apathy creep out from behind the curtain? I will have to be alert to this behavior. So far Cheryl does not seem apathetic. She does have a fading memory. Are they the same?

Carpe Diem.