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.

A Wonderful Weekend

This was a wonderful spontaneous weekend.

We went to visit one of Cheryl’s good friends and former classmates Rosie. Rosie is Sister of St. Francis in Oldenburg Indiana. I always learn things about religion, spirituality and altruism from S. Rosie. She probably does not know that she is doing it. She is so very gentle and kind with Cheryl when we visit her. Cheryl and she were close in school.

Many years ago S. Rosie had a very severe illness which put her in a coma for a bit and ultimately she had a near death experience. She strongly believes that she is able to see and interact with the spirit world. This conversation developed as Cheryl shared that she sees her sister and her mother often. Both are recently deceased. I can attest to this connection Cheryl has with Janice and Elaine. I am guilty of reminding her where one or the other of them is when she bursts from her office and wonders aloud where they went or needs to call one of them on the phone. My answer is to point out that I do not have the number for heaven if she wants to call but if she closes her eyes she will be able to see and talk to them. Little did I know that that is a good idea. I was merely scrambling to help through her current anxiety of location and place.

When Cheryl was describing the experience to S. Rosie, Cheryl with gentle probing from Rosie admitted that she was worried about “going crazy” and that fact is disturbing. Rosie suggested that she embrace the vision as real and told a story her a story about one of her encounters with a spirit that had twirled her around while Rosie was walking with another friend. Her friend asked what happened to her and Rosie described her encounter. Her friend responded with exactly, I saw your side of it. We talked a little about whether Cheryl’s disease had detuned (my word not Rosie’s) her logical, reasoning side of her brain and allowed the intuitive, spiritual connecting brain to emerge. Occasionally I wonder if that occurs to many of us naturally and those who have that insightful perception are ridiculed as crazy or crackpots so they keep their vision to themselves. (What happened at Fatima?)

All of us talk to people that may no longer be in this world but we were close to in some fashion before they passed into the next world. My sister and I tease about things that Mom would say to us. Every time I carry an Amazon box out to the recycle bin I hear Mom say, “Don’t throw away that box. That’s a good box!” I think she told me that in the flesh a week or so before she passed away. It may sound unrealistic but I can actually hear her voice in my head. My sister Joyce tells me that Mom tells her to, “Water that plant!” We both have different mother-child experiences.

The brain floats in a soup of proteins, hormones and other chemistry. The real world is not inside our brain but what is there is our perception of it. Some of Cheryl’s sensory systems are defunct. She has not had a strong sense of smell for about fifteen years. (Handy for the husband who does not feel like taking a shower that day.) She can still construct smells in her head from sight and texture and perhaps the saltiness or sweetness she can still detect with her tongue. Her brain reconstructs smells from experience and using different pathways of sensing its surroundings. What if the intuitive side jumps up and says, “I see something and it is …” The worldly side takes note and Janice appears.

Perhaps one should not be dismissive of hallucinations and visions. What happened at Fatima and other places where incredible things were see by those who could see and were not afraid to tell those who could not? My spiritual self tells me that there is a connection among all sentient beings in some way. Lovers of dogs, for example, are heartbroken when an old companion dies. (Cat lovers too.) I once had a guy who worked for me who wanted to claim funeral leave when his life long German Shepard companion, he was a young man, passed away. And I understood his grief but it did not fly with the HR crowd at that company.

What if Cheryl’s deterioration of her logical, mathematical, connected mind allows her to see with the other part of her brain that does not do math? Cheryl revealed to Rosie that she was not scared of the vision of the spiritual side but she was concerned with getting there (and at that point she began to weep.) Her mother and her sister are very real to her when they appear. She talks to them about what is happening in her life.

She sees others in our little condo area. There is “that person who is in charge” of the school. There is a group of women who hang out occasionally in our window seat in our bedroom. (I started wearing pajamas to bed instead of just underwear or nothing.) Shortly after one of our residents in the next building passed away in July she saw a gray haired woman with a short hair style charging down the back hallway as we were leaving to go somewhere. The woman was vivid enough that Cheryl asked me if I had seen her. It could have been Marty. Cheryl’s description of the woman at the time put me in mind of Marty. A couple of weeks previous I held Marty’s arm to help her step over a curb stone during a meeting with our landscaping company to discuss a new plants installation near her front door.

Those visions do worry her. She seems to understand seeing her mom and her sister but seeing others who are not family is worrisome to her.

But what if she merely has a view to some other elsewhere some other existence? What if?

Carpe Diem.

Farther down the road go we.

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.

It was a Good Breakfast, Dear.

It is important to try making it into a nice day. A few weeks ago another Cheryl wrote on her blog – just let it go – or words to that effect. As we move further down this road of Parkinson I find ways to simply make life more enjoyable.

Cheryl likes egg bread. It is a memory from her childhood. My mother always called it french toast. I do not know what the French call it which sent me on a quest for knowledge from the internet of all knowledge. They call it pain perdu and that translates into lost bread. French toast (pain perdu) is always better if it is made with stale bread. It is better in my opinion if it is made from stale sourdough bread.

This morning I coaxed her awake with the thought of french toast with blue berries and a little whipped cream. This is a picture of mine. She was already eating hers when I decided to take this picture. She had slept late today but it is a good day.

French toast (aka eggbread)

“It was a good breakfast, dear”, she said to me as I was loading my plate into the dishwasher. We have no real plans for today. Perhaps I will take her for ice cream later in the afternoon. Perhaps not. We will just go with the flow today.

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.

Where have Handwritten Notes Gone?

I have saved a lot of old crap. Like most people I suppose have saved from the earlier part of their lives. Always with the intent of “doing something” with that letter, that picture, that article, that thing.

A few months ago I found a bag of that kind of stuff in my armoire crammed in the back of a bunch of other memorabilia. My diplomas and certificates and other ATTAboys are stuffed into the same place near socks and pajamas. My sister refers to these as little treasures.

In this particular bag left over from Waldenbooks (remember them?) I found a collection of old letters written by Cheryl to me in high school. These are not love letters. She is merely writing to tell me about her day. In the example I show here she has continued her letter on the next day, so, it is two letters.

Six pages of handwritten conversation as though I was there or at least on the telephone with her show several concepts of interest. The first thing to note is that her cursive when she was seventeen is written as though it is on lined paper even though there are no guidelines on the stationary. The second thing I noticed as I re-read her note was how she must have taken to heart practicing her craft in grade school and high school. The letter is dated and located and each page is numbered so the reader is not confused.

Not as much emphasis is placed on American standard cursive as it once was when we were children. Many of the MEME-ers on Meta believe this is appalling. I think it merely shows progress in education.

These days Parkinson has stolen her cursive from her as well as other things. Her ability to think in a straight line is gone. Cursive writing is just another item greatly diminished in our new life. And handwritten notes seem to be a thing of the past as we leap into the SMS message days. I have been chided by others for not responding to text messages rapidly. I notice that my smartphone service does not always provide a little chirp when a message appears and I am okay with that.

That last thought sent off to contemplate the idea that voice phone calls except from Mumbai are mostly none existent.

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.