I Found Words from Dad

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.

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.

Memory Loss

Lately i have been reading Gwendy’s Final Task by Richard Chizmar and Stephen King. I became tired of violent crime novels and this book claims to be the final volume of a trilogy. Perfect I thought. Stephen can be wordy although I think he is a good story teller. And Maine is apparently a mess, Castle Rock anyway.

Gwendy the main character is losing her memory and is very aware of it. She maybe dealing with beginning Alzheimer’s or something like it. It is disturbing to her. I wonder if it is realistic to think that folks like Gwendy or Cheryl or others dealing with a chronic illness that destroys one memory are aware of it happening. It is a scary thing to Gwendy in the novel. She talks of how names just disappear from her head and the struggle she has to get the thought back.

There is a lot more to the story but Gwendy is actively hiding her memory issues. Initially she forgets names and her neurologist and psychiatrist doctor has taught her a little memory association technique that helps her through most situations. And Stephen King has a device in his story that works even better. I wish there was such a device for Cheryl. I wish the device did not require the ending that Stephen has worked out for Gwendy.

More and more I hunt for memory tricks to help her. It may be too late for many of those to be useful. Getting out of the car I repeat, “One hand on the door and one hand on the chair and you are out of there.” I have little knowledge of whether that’s working but more and more she reaches for the car door inner handle and puts her left hand on the seat back to propel herself up to a standing position. She often does not need me to repeat it.

Maybe that is helpful. Repetition and repeated talking about what to do makes a new connection in her brain. I often repeat the ABC song in my head to find alphabetical order. The sing-song about the months never stuck with me. So, the connection does not always happen.

Memory loss is discouraging to the care partner. Memory loss is mostly unknown to the parkie that has it. It shows up constantly. — Who put these papers here? Why is someone messing with my papers? Those little girls are always playing with my papers. I better put my papers in my office and close the door. Substitute any valid noun for papers. She puts on two pairs of socks because she forgot to take one pair off before putting a clean pair on.

It (memory loss) destroys any planning skills. The holiday season is next week we better start making cookies. I don’t know why they keep moving the months around. When I see the doctor next week I want to talk about my medicines. (It is a December appointment.) Sometimes anger appears because people keep changing things around.

Fortunately not all parkies experience this memory thing.

Carpe Diem.

Happy Anniversary (52)

I woke up this morning and there on my Facebook feed
Was this beautiful expression of love on our anniversary

It was made by my friend Edie down south
God spoke to her, we never talk by mouth

She has this exquisite talent she is sharing
she posted this on the day of our pairing

Edie, you did not know
that fifty two years ago

Cheryl and I were wed. Thanks for your art.
This day is special, thanks for the great start.
August 29, 1970

It was a seriously hot day. We were dressed to the nines. We were skinny. Life was in front of us.

Happy anniversary to us!

Carpe Diem. (I do not know why I wrote 53) 🙂

Not For a While

She fainted this morning. She has not fainted for a long time.  Orthostatic hypotension. In Cheryl’s case in the past she would faint sitting at the table after breakfast. She reads the paper and absorbs her Cheerios and occasionally faints. But she has not passed out for a long time. She takes a pill intended to raise her blood pressure. I started this post on August 11. As she exercises in front of me on August 23rd I am finishing my thoughts.

Breakfast is/was  monkey bread. A local bakery makes a coffee cake composed of balls of sugary dough rolled in butter, brown sugar and cinnamon. These are pressed into the pan and allowed to proof. They call it monkey bread. A different small neighborhood bakery I knew as a child called it by the less imaginative title of “pullapart”. It is easy t make. It contains a lot of sugar which makes me wonder if that or some other carbohydrate metabolism reduces her BP.

She is generally a little foggy after a fainting episode. Her shower and dressing afterward needed instructions and encouragement. It is exercise class day and I will not let her miss it. I am a stinker about that but exercise always perks her up.

Exercise is seated cardio class introduction. There are a lot of dance moves and some upper body boxing style motions. The idea is to raise your heart rate into what experts call a cardio workout. It is a new thing for Cheryl. the leader, Joelle, is a substitute today and she teaches this style of exercise class on two days that Cheryl does not come to PCF. On the way home Cheryl told me she liked the exercise class. I can get her to exercise class four times a week.

Makes me cry to see her going again, especially after I had to lay her on the kitchen floor to recover from her fainting spell about 2 hours ago. Joelle is playing “Summer Wind” by Frank Sinatra on her Bose speaker laying on the floor of the exercise area. This music is nostalgic for me. I used it for background when I put together a slide show of pictures from a cruise trip we took many years ago that was purchased for us by our daughter and her husband.

When I got home today I looked high and low for pictures from that trip to insert here but, alas, I am a poor filer. The pictures are somewhere. Maybe.

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.

Overnight at the Lodge

A few days ago the kids and grandkids camped at a nearby state park. Cheryl knew about it.  They had exchanged text messages back and forth while the planning went on. I did not talk seriously to Cheryl about it until the day before. If I give her too much to think about she becomes anxious with the planning activity.

I suggested we could stay overnight in the lodge there and visit the kiddos at the campground. She readily agree. I called the lodge desk and THEY HAD HANDICAPPED ACCESS rooms available. I did not ask about their cancellation policy. I was hopeful that Cheryl would still be interested in visiting the kiddos campsite when she woke up tomorrow.

The next day we went. It was a great day. I got the big bed pad out and packed it on the bottom of the big suitcase with extra incontinence solutions so that Cheryl would not have that anxiety all day long. On top of that she packed clothes for a week. Girls need choices. I packed a change of clothes in the little bit of space left in the suitcase.

We got there about 3:30-ish and found the room. I texted David and found out where their camp sites were and cruised through the campground twice after misreading the signs the first time through. We found them unloading coolers and tables and chairs and other stuff. Everybody was busy with something so I parked in an empty campsite across the little drive through the camping area. Luke was loading a cooler with soft drinks. Anna, Laurencia and Virginia were making quick work of erecting a couple tents.

Good times were soon to be had. Frisbee games were unloaded. Eric and Max tossed a baseball back and forth. Corn hole was set up. It is not camping if there is no corn hole set around.

There was great camp food. Our son, David, with Cheryl’s help, current veggies and sausage packets to place on the fire. Cheryl had a great time participating in the food preparation. For a short while she was Mom again. She was talking and cutting. Dad was hanging out with the grandkids and the other adults.

We had some great conversation around the campfire.  Parkinson disease interlaced with dementia takes most of the spontaneity out of our living activities these days. I had forgotten about that. I am sincerely grateful that Cheryl was feeling good that day and evening. We both miss the spontaneity of retirement.

And grateful that some of our hoped for spontaneity in retirement was there that day. Twenty-five years ago we would spontaneously decide to disappear on the weekend and hike in the woods or explore some little town we had not been to before. Once we stayed overnight in a bed and breakfast in Chilicothe, Ohio and the B & B was being run by others because the owner was going to Columbus overnight for a cancer treatment. So, we stayed overnight with strangers in someone else’s house. It was amusing and fun and spontaneous.

Carpe diem

MMXXII and Enjoy the Moment

Tim Scott has a new book. It has just been published so he is making the rounds promoting his new effort. Perhaps merely because he is intelligent and half of the Senate representation from South Carolina but probably also because he is black and Republican, the CBS Morning newsies cannot resist asking questions that have little to do with his book.

To a question about whether he was considering a run for the Presidency of the U. S. he responded, “… You shouldn’t worry what’s next if you haven’t finished what’s now.” He gets my new life philosophy.

Carpe Diem. Latin for seize the day. I use it to end my little posts about various issues Cheryl is dealing with but it is also a reminder to me to stay in the present. Do not linger in lamentation over perceived losses. Stay focused on the now. But do not get so narrow minded that everything has to be “just so.” It can be good enough. (An engineer would add – for who it’s for.)

Do not become anxious about the future unless you are making a list of stuff to take care of before leaving on an extended trip. Worrying about what is to come is of no useful purpose. Plan and if God laughs at you, laugh with Him.

Carpe Diem to me also means stay in the moment. Enjoy this moment. Take a selfie if you want to have a remembrance in some future time. I personally do not understand the selfie thing. Most of the selfies I see on Facebook do not give one a sense of where one is. Occasionally there is a glimpse of beach or Mickey Mouse ears but often the background is some drinking establishment which could be anywhere in the world. I have also noticed that the camera aficionados in my family point the camera away from themselves. Me included.

Cheryl found this image of my youngest sister, Laura and her husband Jeff. They look very happy. Laura looks radiant. They are enjoying the moment. I maintain it is impossible to look this happy and not be happy in your soul.

This picture was made pre-smart phone. It is therefore not a selfie. Many years ago I visited with my west coast sister in Seattle. I was working on a job farther north in Vancouver BC. Walking down Market St. I was nearly clothes-lined by some woman with her selfie stick. It was the first time I had seen a selfie stick. (Oh, I have wandered off into the weeds.)

Carpe Diem.

An August Evening

Rainy days in August have produced sundowner’s confusion and dementia. On this particular day it seems a bit worse.

Cheryl has had a particularly busy week. Two physical therapy visits and an exercise class happened this week. On Monday evening our HOA board had a meeting to discuss maintenance schedules and what new projects we could take on with the money on hand. Jane came across the hall and sat with Cheryl on our back porch while I attended. (Jane is a wonderful neighbor.)

On anything goes pizza Tuesday we had dinner with our neighbor Jane as usual and in addition our new upstairs neighbor Joe joined us. Joe moved into the front condo over the garage spaces. Much of getting to know you conversation happened. Cheryl knew of a woman which she attended high school with who had the same last name. Her name was Kathy. As it turned out she was Joe’s younger sister. Jane’s husband used to play in several bands when he was still alive many years ago and Joe’s last name was familiar to her also. As the story developed it became apparent that her husband John had played in a band with Joe’s father.

It was a great getting-to-know-the-neighbor conversation. There were lots of memories for Joe and from Jane and Cheryl. When we got home Cheryl was exhausted.

Wednesday, I had arranged for my cousin-in-law, Linda, to come and take Cheryl to her physical therapy appointment. I went to visit the lab of a local community college program that I am still involved with. That facility is twenty minutes or so down the highway and I was gone for about two hours. We later met back up in a local diner for lunch.

Thursday it was my intention to attend a exercise-for-care-partners class at Parkinson Community Fitness after Cheryl’s twelve pm exercise class. I had previously arranged for my daughter to pick up her mom so that Cheryl would not have to stay. I found out my class was canceled at the last minute so when Anna showed up we all went to lunch. Our grandson Max was with his mom and he showed off his new laptop he purchased for college. He will start in a couple weeks.

I had hoped to ride my bike for a bit so Anna and Max remained with Cheryl. Alas, the weather did not cooperate. As I entered our condo Anna was helping her mom sort coins. These had been residing on the dining room table for several days but the project was several weeks old. Cheryl found them back in her office a few days ago. Cheryl told her daughter that when they were finished they would give the coins to her dad. She used to help her dad roll coins from his gas station business many years ago.

Max was frustrated with his new laptop. The camera no longer worked. What ensued afterward was a chat via the internet with some Microsoft expert and ultimately a complete reload of the operating system. That seemed extreme to me but I am an old retired electrical guy whose been fooling around with systems, software and computers for fifty years or so. We are living in a new age now. Ultimately it was discovered that Lenovo had placed a privacy slider to cover the camera on the upper edge of the case. It was a mechanical failure or an operational one depending on who is characterizing the action.

On Friday I was still hoping to ride my bike and the weather was still not cooperating. Cindy came anyway And I went to get a haircut and run a few other errands. I returned about an hour later.

This whole week was generally gray and overcast. It was not gloomy like the wintertime but gray and rainy nevertheless. It is still rainy and poopy outside as I write this.

The rest of the day was filled with visions and stories of her family. She was looking for Scott. Later in the evening she told me a story about Easter eggs, coloring them and Mavis. She eventually called our daughter-in-law Mavis to ask about what her objection was to coloring Easter eggs.

Earlier in the evening she asked, “Where is Ken?” I told her that Ken was probably home but I was not sure. She should call him and talk to him. She did not take that suggestion.

It was a frustrating afternoon and evening for me. Later I realized after she had exhausted herself with a very busy sundowner episode that for the first time this week only I was here with her and she could relax and let all that out.

As she laid in the bed she asked me to make sure the kids all got home okay. This morning she slept until 10 am.

Carpe Diem.