Ought, Cough, Bough

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Wordle is a game that makes me happy. I found that thought in my head after finding the wordle answer a couple days ago. It matters not that I needed one guess or five guesses. There is no competition. (And yet there is someone on the World Wide Wait that needs to explain to me why it is popular.) It is a personal challenge. It is the first thing I open on my tablet in the morning, well, almost. Sometimes the book I was reading the night before opens itself and I read that for a little bit.

Cheryl is semi-sleeping now. I checked on her. She is “trying to decide” about getting up. We have no scheduled activities or she does not. Actually I do.

Early in the morning while she is in this mode, I have time to look at other things, check email, see what folks are whining about on Facebook. Facebook has a strange way of posting things on my “news feed”. Calendar time seems to have little to do with it, maybe, nothing to do with it. It must be a complicated algorithm. Ho Hum. After determining that there are no email, Facebook or other emergencies, I move on. It amuses me to notice how many folks will post something on a group page which might better be solved by picking up the phone, I look at WordPress to think and gain some inspiration to add to this blog of mine.

The statistics page is often of interest since much of the display intrigues me. Today this little display in the corner seems to report that someone in Thailand looked at my blog.

That in itself is not strange. Type a random thing into Google and it returns all sorts of unrelated finds. But all seven views were of an old post I entitled “Things that make you Happy” and I reread it this morning. I found inspiration in my own words.

Over the past weekend we visited with my cousin Bettie and her husband Herb. It is always a great time with family and friends that we do not see that often. Bettie’s house is perhaps forty-five miles away south and east. It is a pleasant drive through the northern Kentucky countryside and for Cheryl it is a far away destination. On this particular weekend the hurricane that crossed Florida and came ashore at Georgetown, South Carolina had spread its cloud deck inland to eastern Ohio and Kentucky.

On the start of our trek it was bright and sunny. I aimed the car south and east towards Bettie and Herb’s place and drove under the cloud deck. Watching to sun go down from their front porch and side deck was magnificent. My son remarked to me that he had not seen a rainbow before. I do not know whether he meant ever or as brilliant as this one was. It was perfect timing for a follow up question but I did not ask him. Carpe the missed diem.

Like most things I have taken pictures of with the smartphone’s camera, the pictures do not capture the magnificent colors that were produced by nature. The rainbow produced by the narrow view the sun had of the under side of the cloud deck and upper misty air was brilliant and exceedingly bright. The pictures simply do not do it justice. But being there with family and friends and watching a unique sunset made me happy.

Happy to be alive and happy I was able to share the moment with Cheryl.

Carpe Diem

Parkie Time

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… is different than any other time.

I think that when I want to do something with Cheryl, parkie time shows up to slow things down. It is inevitable. She will say- let’s go or are you ready to go- or words that convey the sentiment that she is ready. Nope. That is a incorrect interpretation of the language.

If I stop to consider parkie time though it makes sense. I thought we were headed to the car. Actually we were headed to check on several stacks of paper in her office before we go. The thing about parkie time is that it has little to do with clock time.

There’s a period of hesitation while one remembers what is happening next and what is required for that activity. If I realize what is happening I can help but sometimes the help is unappreciated. It is a delicate balance of gentle help and unintentional stress. Memory loss mingles with confusion to create stress.

The important thing is to not respond to the smart-Alec comment or to make one. Running down the road jabbing at each other with pointed sticks does not accomplish much but admittedly can be momentarily satisfying to both. Resist doing that. The road is smoother. There is less apologizing later. Certainly there is less guilt at having trod all over someone’s emotions.

The disease is not them. It is hard to remember that in the rush for the door to leave and go somewhere.

Carpe Diem.

Grace

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Recently a classmate and friend of Cheryl passed away. Sister Mary Claire Hausfeld was not in Cheryl’s ICA class. Cheryl went to grade school with her and Mary Claire went to OLA high school. She found her vocation after high school. But that is not what I want to tell you about.

In a wonderful and well written obituary about Mary Claire and her life of service S. Delouise Menges writes about grace in Mary Claire’s life and how to recognize grace in our lives.

This poem by Marilyn Chandler McEntyre that Mary Claire used in prayer is a beautiful and touching meditation.

How to recognize grace

It takes you by surprise

It comes in odd packages

It sometimes looks like loss

Or mistakes

It acts like rain

Or like a seed

It’s both reliable and unpredictable

It’s not what you were aiming at

Or what you thought you deserved

It supplies what you need

Not necessarily what you want

It reminds you, you’re not in control

And that not being in control is a form of freedom

I have read this over several times and the line that strikes me most is “And that not being in control is a form of freedom”.

This life of Parkinson gives that statement new perspective. Little of our life is able to be controlled and I for one would like life to at least be predictable. It is not predictable either and that can be a form of freedom if you let it.

Carpe Diem.

October 2, 2022

Surrounded by Wonderful Loving People

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“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

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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

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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.

I Found Words from Dad

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I found this old letter in among other pictures from my mother. I have a couple plastic tubs of “Mom and misc.” Recently I was looking through these looking for something else.

For awhile I thought about Dad and our relationship. I found in my memory stories that I have about him.

When you think about people who have died, they are alive again. At least for a little while they are here with us.

Carpe Diem.

It was a Good Breakfast, Dear.

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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

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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.