Another Learning Experience (God I Hate Those)

Learning and Letting Go

Care partners get practice every day at letting go of anger and frustration. In the evening and overnight cognitive decline and memory loss manifest as sun-downing and confusion. Last night was one of those and one in which the sleep helping medications did not work.

After a couple of hours of fidgety and squirmy, up to the toilet and looking for medications to take, eventually Cheryl fell asleep. Eventually, her care partner fell asleep also after hearing the living room clock chime two.

In the theme of “Carpe Diem” my thought on this morning is to be bright and cheery. I am typically not a bright and cheery person in the morning. Cheryl will not be but she has Parkinson and did not sleep well.

So where is God at 2 AM? He is probably asleep as should all of us who are not on night watch.

I learned two things from this experience. I learned these before but the lessons did not stick with me. First, I learned that anger inhibits sleepiness. I had a difficult time relaxing enough to attain sleep mostly because I was angry with Cheryl at 1 AM. And second, Cheryl will not remember today. She will be aware of only one thing in the morning and that is being tired. She may remember me being angry but will not remember about what.

As I said, this is not a new lesson. It is merely one easily forgotten because it is human to feel slighted by another. The real lesson is, “It is not her.”

Letting go of yesterday’s and early this morning’s emotions will be a better way to start this day. Yesterday is past. Today is a new day. Seize It!

Carpe Diem.

Longing for a Life

Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.

Sometimes You Find Things

Cheryl throws little away when it comes to cards, letters and other written communications. Those include decades old information about house buying, information about her mother Elaine’s finances and letters to Cheryl while at Oldenburg Academy. Old pictures are a treasure and are these days mixed in at random. Recently I was searching for a story I had written some time ago about my mother. While searching for this on many thumb-drives I discovered several note files Cheryl had made a few years ago when her mother passed away. These are thoughts about comments for a eulogy about Elaine.

These days Elaine is very much in Cheryl’s thoughts. Elaine is present and real to her. She often says, “I want to go visit Mom.” Here are some of her memories from a few years ago.


Eulogy for Mom, an Excellent Seamstress

The first example of Mom’s sewing skills took place when Janice and Cheryl were little girls, maybe Cheryl was 5 years old and Janice was 3. Anyway Mom made each of them a new winter coat and leggings and a drawstring purse… she may have also made each of them a bonnet… we’re not sure because we cannot find the photos. However, part of what made this so special is that these clothes were made out of the fabric of 2 adult coats that were no longer needed… we don’t know if they were old coats that belonged to Grandma or Grandpa Moeller or someone else in the family. But Mom carefully took apart the seams in the adult-size coats and made these lovely warm outfits for Janice and Cheryl. Cheryl’s coat, leggings, and purse were made out of a light gray fabric, and Jan’s coat, leggings and purse were made out of dark red fabric. Mom had a lot of patience and skill as a seamstress.

The second example of Mom’s sewing skills is best told from Cheryl’s perspective:

This story took place when we were making plans for Nancy and Ron’s wedding. Mom and I were making the bridesmaids’ dresses for Nancy’s wedding. We had purchased this lovely, soft fabric that had a light blue background with a multicolored floral design. We bought the last bolt of that fabric at the store… there was no more anywhere. We knew that we might have trouble getting all the dresses we needed from that fabric, but we were determined to make it work. Finally we came to the last dress, which was mine. As we were cutting out the pieces of the pattern, we realized that we did not have enough to cut out both sleeves for my dress. The sleeves were what I would call poofy sleeves with an elastic cuff at the elbow. We did have a couple of fabric remnants, but none were large enough for the sleeve. Mom came to the rescue! She sat there at her kitchen table and moved the 2 largest remnants around until she matched up the floral print; then she sewed the remnants together, and you had to look really hard to see that seam. I finished making the dress, and I was extremely proud to wear that dress in Nancy’s wedding.

More stories about Mom

Travel — Mom was never afraid to fly anywhere. She often flew to Florida to visit Janice and her family. She also was friends with a couple who lived in Virginia Beach. Mom would fly to Virginia Beach to visit this couple… Mom’s friends would usually have to go to work while Mom was visiting, but they would give Mom access to the nearby beach. And Mom enjoyed the sunshine and walking the sandy beaches. These thoughtful friends gave Mom a place to relax, especially during the years soon after Dad died.

Jobs — Mom worked as a dispatcher for the St. Bernard Dial-a-Ride for 15 years, beginning in 1991 when she retired from her job as a receptionist in a doctor’s office. Mom loved the part-time Dial-a-Ride job. It allowed her to keep up with activities in her beloved St. Bernard. Everyone knew her and loved her. The only reason that she quit the job when she was 80 years old was because she was losing her eyesight due to macular degeneration… so she had difficulty writing in the dispatcher’s log… other workers had trouble reading Mom’s handwriting… even Mom had trouble reading what she had written. She thoroughly enjoyed working at Dial-a-Ride. She said that, if her eyesight had remained good, she would have continued working there until the end of her life.

Picnics in the county parks with our Krause and Moeller cousins when we were little.

Attended Mass at St. Clement Church on Sundays and during the week.

Reading stories to any and all grandchildren, even when her eyesight was fading.

Bowling team with Evelyn Schulte, Marian Kistner, and Marian Kahlis — played at Brentwood Bowl.

Eulogy for Mom, 2 Special Men in Mom’s Life

Mom had a really good relationship with Dad. They were devoted to each other and to their children. Mom and Dad liked to go dancing… sometimes at the Eagles Hall… sometimes at a wedding reception… any place that was playing music written by the likes of Glen Miller, Johnny Mercer, Henry Mancini, etc. Dad also loved to spend time with his children, even though he worked so many hours at his gas station/auto repair shop, that we didn’t see him as often as we would have liked to. When Dad would come home from the gas station, he usually had some accounting work to do after he ate some supper. If it wasn’t too late, he and Mom might sit at the kitchen table and play cards. In fact, when he had time, we played a lot of card games with Dad, such as Rummy, 7Up, Crazy Eights. Dad loved automobiles… he liked to shop for cars. An evening out with Mom and his children would often consist of visiting the used-car lots in the Carthage and Hartwell areas of town. We would often leave home in one car and come home a few hours later in a different car. Mom and Dad also enjoyed celebrating Christmas. In preparation for that holiday, weeks ahead of time Dad would begin setting up the train and train tracks in the living room and in Mom and Dad’s bedroom, which was next to the living room. Imagine having to step over train tracks to get to your bed! Dad also created many small buildings for the train stations and train neighborhoods out of old shoe boxes. The train layouts that ran around our Christmas tree were always magical.

We never wanted for anything… Mom and Dad always saw to it that we had plenty of clothes, food, toys, etc. Unfortunately, Dad died too soon. Lung cancer ended Dad’s life on April 11, 1977. This was devastating for Mom and for all of us. During the years before his death, Dad would often be admitted to the hospital for radiation treatments to shrink the tumor in his lung or to treat his chronic bronchitis or pneumonia. Whenever Dad was in the hospital, Mom was always there at his bedside. Mom devoted her life to caring for Dad.

Mom had started working part-time while Dad’s battle with lung cancer progressed. After Dad’s death, she began working as a receptionist at a doctor’s office in Clifton. There, a couple of years later, Mom met a gentleman by the name of Bob Roller. Bob invited Mom to go out with him on a date, and so she did. Pretty soon Mom and Bob became companions. Bob was not a dancer… he may have been a dancer at one time, but due to diabetes, both of his legs had been amputated at or above the knee, and he wore 2 artificial legs. Bob had other interests… he was a history buff… he liked to visit historic sites. So Mom and Bob would go to museums and air fields like Lunken Airport or the Air Force Museum in Dayton. Bob also liked to play Scrabble, and he and Mom would often sit at Mom’s kitchen table, playing Scrabble all evening. Bob was a very kind man… he loved Mom and Mom loved him. They were companions for about 16 years, until Bob died. I don’t mean for this to be a sad story. I think that it is remarkable. Mom enjoyed the company of 2 very special men in her life. Even Bob Roller’s children recognized how special Mom’s relationship was with Bob. Members of our family attended Bob Roller ‘s funeral. Bob had been in the military and so there was a flag ceremony at the grave site. The officer presented the folded flag to one of Bob’s sons who turned and presented the flag to Mom! We all shed many tears that day.


As I read these this morning in the background on television the news folks were reporting on the 9/11 ceremonies going on in New York, Pennsylvania and Washington D.C. I did not notice the TV until I was reading this last commentary about Bob Roller. Bob had been a bomber pilot during the war years. That was his interest in planes and flying. Somehow the background of names being read at ground zero seemed apt.

Reading these notes of Cheryl’s a few years ago touched me. I can hear her normal cadence and volume of her voice. I can hear and see her pre-Parkinson train of thought. Little of this is present these days. I miss simple conversation with Cheryl

Carpe Diem.

Sunflower Day!

It is the day of the Sunflower Rev it UP for Parkinson’s Walk/Run. Cheryl and I thank all who participated, donated and simply is there for Cheryl when she needs help.

It is not too late to donate: https://secure.qgiv.com/event/2sriufpw/ — Cheryl’s team name is SMILE. Because “Mom always told us to smile.” And how can you not smile after saying whoopadidee!

This year was the first year that Cheryl and I did not get up early and head down to the riverfront. Alas as her disease progresses it is not to be on some days. This was one of those. Thanks to all who participated.

Carpe Diem!

Time for a Change

One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.

More on Expectations

I did not mention previously that I have greater expectations of myself than anyone else around us. I tend to focus inward and make all things that go badly my fault.

Fault is something that a catholic education will drill into you. Recognizing that humans are weak in many ways is something catholic education ignores.

“… And if you should fail in this, humble yourself, make a new proposition, get up and continue on your way.” (Padre Pio)

I am feeling disappointment in myself today.

Carpe Diem

I Expect Too Much

I do.

I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.

I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.

I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.

Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.

As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.

Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.

Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.

If I change my expectation for her walking, perhaps I can help her improve.

If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.

Perhaps I need to change my expectations.

Carpe Diem.

The Devil Wears Prada

It is a great movie about work/life balance. Meryl Streep, Anne Hathaway, Emily Blunt, Simon Baker, Stanley Tucci and others portray an exciting and treacherous existence in the environment of high fashion. Along the lines of Pretty Woman, Nigel (Stanley Tucci) helps Andy (Anne Hathaway) to get her act together and become indispensable to Miranda (Meryl Streep) the head of the magazine called Runway. Ultimately Andy realizes the life is not for her after she realizes how duplicitous Miranda is following an episode in which Andy has placed all of her loyalty and assumes a friendship that does not exist between the two women. She pitches her pager into a fountain in Paris and walks away.

That movie appeared on VH1 the other night as Cheryl and I were winding down in the evening. I have watched it several times before. It is very well done. And now it occurs to me that my working career was over in time to allow me to devote myself to caring for Cheryl. I like to watch movies and Cheryl and I have been doing that more in the evening. She seems to enjoy sitting quietly and watching while also looking at a magazine or messing with the Frameo that no longer receives pictures for some mysterious reason.

The storyline of movie has to be slow moving and serious and tell a story. The superfluous and loud comic book movies that seem to be popular do not interest her and they are hard to follow. I find them to be the same.

She is completely wrapped up in 80 For Bradley because she likes the four actresses involved in the story. I am constantly hunting for another like it to capture her interest. (We have watched it many times.) I am much too familiar with “80 For Brady”.

Last evening I found an old Tom Hanks movie “Big” was alive and well on MGM+ on demand. We watched that. A cute little story with a very young Tom Hanks. Cheryl sat and watched it all the way through. She sorted some of the Kleenex in the box next to her and lined the tissues up with the old CET Connect magazine that she was looking through while also half watching the movie. We talked on and off as her mind wove the movie story line into her memories of childhood. In all it was a calm and pleasant evening and she ran out of gas about 10:30 PM.

Perfect! She got to see the weather report so that she could forget it today. Winter is coming and so is Friday the first of September.

Carpe Diem.

Monday August 28, 2023

August 30, 2023 – a blue moon

Cheryl has two therapy sessions today. One is occupational one is physical. As we pulled into the south portico I realized that it was jammed up with four other vehicles and all are equipped with mobility equipment ramps. I stopped short and helped Cheryl up the curb to her walker that I placed on the walk.

My third thought after damn it is crowded,  why are all these people here now and in my way was I guess we do not have it that bad after all. As I helped Cheryl walk past one van the ramp came out of the side door and settled onto the walk next to us. I thought how convenient. A crippled woman was sitting in a battery powered mobility chair. She said, “Hi!” as we walked by. I thought that looks way more difficult to deal with. I wonder what his morning is like as I looked at the guy helping her.

Tomorrow is our 53rd wedding anniversary and the day after that the anniversary of when we met. It is also a blue August moon as it was in 1966. It makes me wonder how often blue moons occur in August. We met on a special day. This year the same celestial event happens. We have had and continue to have a special life. (Follow-up — only once between 1966 and this year. According to the internet of all knowledge.)

So far we do not need a battery powered chair for Cheryl to get around. I do have a transfer chair for when she is not moving well. I bought it as a convenience to me.

Carpe Diem

It’s Hot

The weather weenies all recommend the same thing  – it is hot, stay home if you can. It is snowing, stay home if you can. It is raining, stay home if you can. There’s a new strain of Covid called ny.g.78.5-17 circulating, stay home if you can. Canada is on fire, stay home if you can. The Indians have landed a lunar lander on the south pole of the moon, stay home if you can. The head of the Wagner group got his plane shot  down, stay home if you can.

The Republican psuedo debate is on television tonight, stay home if you can.

A woman on the other side of the gas pump to me remarked they say the economy isn’t bad, making clear reference to the price on the pump. I thought, stay home if you can. I said, it’s hot though.

There are so many things for us to worry about, I am going to stay home if I can.

Hot outside, stay home if you can.

Carpe Diem.