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.

One More Thing

There is always one more thing to do, one more chore to accomplish, just one more job. The unpaid but highly rewarding job of care partner is filled with unrelenting detail and a never ending series of little jobs. The list is long. New things are added often.

Take some time to reflect. Cheryl’s creeping dementia does not allow her learn new things or compensating techniques easily. And she may not learn them at all. She might learn the reverse. Always be encouraging even as you as care partner become discouraged.

Carpe Diem

Enjoy the rest of it.

Whatever it may be.

Help where you can. Sometimes she will refuse the help. Help anyway.

Double Carpe Diem.

Reminders

Today I have taken notice of the necessity to remind Cheryl what she is doing and where she is going. On this particular morning I have reminded her that she was going to change clothes for exercise class three times so far. Once she is away from other distractions I relax a bit and wait for the next reminder time.

Today’s list of events

Starting sometime in May after I was into my care partnering seminar I started to post the days events on this handy piece of white plastic left over from some project. I read an article that gave some tips for helping those who are struggling with dementia. It spoke of using a small erasable white board to post events somewhere. There is one on the wall of every hospital room I have been in for twenty or more years.

I had this and it works for me. I even had dry erase and wet erase markers leftover from my teaching days. They were not dried up yet, so, I was set for awhile. Since May I have had to order more markers. This one is near the end of its useful life.

The family calendar became less and less meaningful overtime. Cheryl is no longer able to discern what week or day is applicable to today. I started transferring the days events onto this board the night before I went to bed. She reads it the next day and looks through the newspaper. Even though the date is printed at the top of the newspaper she cannot relate it to the date for today.

Dementia, confusion and memory loss is annoying to be sure but the silver lining is every day is new and fresh.

Carpe Diem.

Dressing the Bed

When I make the bed in the morning, lots thoughts run through my mind.  I imagine that everyone does this or at least everyone who makes the bed consistently. I recognize that not everyone dresses the bed in the morning before work or other chores. These days it is often a necessity.

I once remarked to my sister-in-law as we traveled to our pizza Tuesday destination or some other dinner destination and she asked Cheryl, “Is this a good day?” that it is a good day. There is no extra laundry. As this disease moves on occasionally there is extra laundry.  That there is none does not equate to a good day so it was just a stupid comment. Uncalled for as I looked back on it this morning while getting the extra laundry in the mixed load started.

Laundry is one of those chores I never did before this disease. It crept into my life four or five years ago. Now I am defensive about my methods and organization of it.

But what started me down this meditative road this morning was not laundry, it was the thought of a good day.

A week or so ago on the family chat text session, Ken remarked that he could get pizza delivered to his slip where he docked his pontoon boat at the lake he lives near. I texted him late in the evening to ask if he was up for pizza Tuesday and early in the morning he said he was. Her face lit up when I told her that Ken was coming for pizza Tuesday.

A few days ago I asked her brothers and sisters to spend more time with Cheryl or simply call on the phone to chat. It is something she really enjoys. It is also something that is difficult for her to do on her own with her current diminished cognitive ability. Tonight her brother is coming to share pizza.

She probably will not remember he is coming until she sees him.

And Ken being Ken was already there when we got to the restaurant from the occupational therapy session this afternoon. Her face lit up again. He slipped into the back of the booth we selected across from Cheryl. They talked about family. Cheryl occasionally struggled to find a word or a name. Ken waited. They talked more about old times that had occurred in this very restaurant when it had a different name.

It was a great visit. Cheryl thanked me for the great evening. I thank Ken for his patience and gracious support and understanding of his sister’s struggles.

It was a good day.

Carpe Diem.

Last Evening Discussion

Last night or maybe the day before Cheryl asked me whether we would have to get another booster shot. Covid-19 has drifted into the background since the death of E ii R and other news. I replied that no doubt someone was working on a new shot to address the specific variation of the virus in the same manner that a new flu shot is developed every year. We will ask Lauren when we see her in December.

The WSJ has this to say today about Covid -19.

Her commentary and question about the current covid vaccine challenge was mixed in with other comments about the many old Christmas, birthday and other holiday greeting cards that she has rediscovered and placed in a small basket crafted by my dad’s deceased sister Alberta. I still marvel at Aunt Bert’s skill. Cheryl marvels at all the cards that in her mind just appeared in the mail. Most are years old but they just came today.

Sometimes she replies to the messages contained inside each card on the card itself. Later when she reads her own reply, perhaps days later, it is new information.

Dementia is at least memory loss and everything is new and fresh. I have not been given that gift. Everyday is a new day even if it is Groundhog Day.

Carpe Diem.

More Things I have Learned

After a sleepless night and an early rising at 5:30 am I begin to doubt my great idea of buying a new bed so we could sleep better. The last couple of nights have been a build up to last night’s insomnia.

After that experience I notice a couple of things. We are both on edge. She is upset that I am angry that she could not sleep and wants to offer an explanation. I am only-one-cup-of-coffee cranky and unwilling to accept any explanation made up out of whole cloth. As the day continues we will ease up and move on as we recognize that we both are very tired.

Most nights the big new bed has made a huge difference in our sleep. Lately I have been letting her sleep in a bit because it seemed to me that she was very tired in the morning. The LOUD AND ANNOYING clock did not wake her up. I think that will change.

I Have Learned

  • Kindness returns after 2 mugs of black coffee
  • Cheeriness requires more coffee
  • Grumpy can last all day if you allow it to.
  • Maybe listen to the explanation while getting more coffee
  • Get her to take 7am meds and get breakfast
  • If she wants to make Christmas cookies, let her.
  • Her conversations will wander all over the place when she has slept poorly.

Carpe Diem.

Organizational Techniques

This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

bump-n-run

It Seems Counter-intuitive

Cheryl has some dementia which is a nuisance with her decision making process. Any attempt at speeding her up doesn’t seem to work well. She merely gets angry and frustrated with her husband. And it is hard for her husband to not speed her up. That must be fifty-two years of helping getting in the way of care partnership. (Smiley Face)

This morning I tried to move her along without being pushy. Yes, I can be and have been pushy.

She wakened several times overnight to go to the toilet. I got up to help her once. So, when the seven am medication alarm went off, she ignored it. I got up to remove that annoyance from my ears and get her first dose of stuff for the day. When I returned her snoring indicated disinterest in arising for the day.

I laid back down to see if she would stir again. When I awakened it was eight am. I must have been tired also.

Eventually I left the bedroom to make coffee, get the papers and turn on the news to discover which part of California is on fire. An hour or so later I kissed her awake and she asked me when church started. I told her that she had exercise class at noon. I left to drink more coffee and to listen to the interesting fact that no toilets could be flushed in Mississippi. I returned for another gentle nudge and she got up.

I suggested scrambled eggs and toast for breakfast and she readily agreed. I continued with gentle nudges and quit concerning myself with whether she would be late for her class. She was not late.

The exercise classes she takes at Parkinson Community Fitness are a benefit to her so I make every attempt to get there on time but today I tried a not pushy technique. I call today’s strategy “bump and run.” I would engage her and nudge her thoughts and then leave. I came back a few minutes later for another bump and run. It worked and neither of us was upset when we left.

Today’s class was led by Paige and Jenna. Jenna’s notes are here. The rowing person is excited to do the exercise.

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.

How Big are You

Author and futurist Robert Anton Wilson on the size of a person:

“You are precisely as big as what you love and precisely as small as what you allow to annoy you.”

Source: Nature’s God

— from James Clear’s email

This appeared from James Clear in his email newsletter.

It spoke to me. Deeply.

I do feel small when I allow Cheryl’s disease to become her. It boils over into anger and guilt. I forget often that she is not her disease.

She has been getting physical therapy to help her with movements like getting out of a chair. Sit to Stand is the notation on the PT’s notes. This motion is natural to non-PD people. One does not even think about the mechanics of it. Cheryl has to think and remember the sequence of moves. Depending on the time of day and how she is feeling, thinking and memory are difficult. So she simply cannot remember how to get out of a chair.

When she has fallen and when she falls it is always backwards. I encourage her to lean forward at her waist and push off the chair as the PT told her. Nose over toes is the mantra. But in view of anything, walker, table, person, nearby grab bar or whatever grip, grab and pull easily win over N-O-T. I encourage by telling her where to put her hands and how to position her body. She responds with don’t-tell-me-what-to-do anger. I respond in kind and then feel bad because I was to her unkind.

I love her dearly (big). I am annoyed with her disease (small) and I allow it to be her (smaller).

My personal reason for writing this is to hold that idea up in the light and discern how to be better next time. I am grateful for all the next times even though anger anxiety and anxiousness might creep back in. It is hard work and I am not that good at it.

Time to meditate and ponder with deep sagacity.

Carpe Diem