Free Falling

The Traveling Wilburys or some other group recorded song many years ago with this title. There are many days when I feel just like this. We are free falling through life with Parkinson.

There are days when I wish I could see the world through her eyes. There are days when I wish I could sense the world through her jumbled senses. There are days when I wish I could understand why it was important to stack the Kleenex just so.

It is exhausting.

This morning as I think about Cheryl’s disease and how it is affecting her and how it has changed our life my emotions about it all are jumbled up in my thoughts.

Love is carrying us through it all but a few more scientific facts would be useful.

Some evenings go smoothly and she is calm when she goes to bed at night. She sleeps. I sleep. Those facts may have little to do with outcomes of the next day. Last night I lowered my expectations of her and suffered along. Eventually about 1 AM sleep happened.

Today we have donuts for breakfast.

Carpe – this – Diem. The next day may not be.

A Day that will Live in Infamy

Looking back from the afternoon towards the morning I have to laugh a little.

Cheryl’s doctor is still adjusting her meds. Trying to sort out sleep issues, depression issues, hallucination issues, movement issues and other Parkinson dilemmas takes time. In the meantime sleep is illusive. Last night I got the message – quit taking the quetiapine for sleep. So I did not give her the quetiapine.

This morning I got the message, the doctor has communicated with the neuropharmacist and reviewed all the other stuff she is taking. Start giving her the quetiapine 75 mg for 5 days and then 100 mg from then on. The nurse practitioner will check back in two weeks to see how it all turned out.

That is counter intuitive. 75 mg is twice the original amount of quetiapine that she was taking. After I finished reading all that I went to check on Cheryl. She was awake as she had slept poorly but quiet enough that I slept like a stone or at least a stone with a two-teaspoon bladder capacity. Overnight I sensed that Cheryl was awake but she was not talking gibberish which happens sometimes when she dreams out loud. I fell asleep easily after getting up a couple times. (God, I hate old age.)

We decided on waffles and fruit for breakfast. She ate her pears and part of a waffle and disintegrated into a coughing nausea fit which caused her to quit eating anything else for awhile. As that died down a bit, my cousin-in-law called with a long explanation about why she was unable to participate in Pizza Tuesday tonight.

Linda told me a story about her upstairs neighbor’s incompetency, water leakage and associated repairs. I started to think my life was not so bad at least my building wasn’t falling down around me.

Cheryl decided that she wanted to lay back down for awhile. I helped her back to the bed room and the bed. I then returned to the kitchen to finish assembling a new pot of coffee and wait for the next activity. I turned on the kitchen tap and a tiny trickle came out.

When I had the kitchen remodeled a few years ago I opted for the super faucet that I only need to touch somewhere to make it come on. It was a $300 option but it was extremely handy over the years. It is a battery powered system and the problem that presented itself told me the batteries needed to be replaced. Alas! I found new batteries and did that. Still no water! I called the plumber. Micky listened and told me that they have had a couple failures but she was sure mine was still under warranty and would check to see how long to get parts and call me back.

I took my coffee pot to the sink in the utility room for water. The sink in the utility room was running very slowly. WTF? Did we have a water main break? I called the Greater Cincinnati Water Works generic hold number and the robot answer-er asked if I wanted to discuss my bill. No! I replied. and eventually was connected to queue manned by a single human. This is similar to going to the post office to buy stamps at the wrong time of day. While on hold i decided to go look for my Amazon package that the driver had beeped my door buzzer about earlier. The package was leaning on my front door which led me to look into the front lobby of our condo building. The front door was propped open by a plumber who was working on the new neighbor’s condo up stairs. I tapped on her door and grumped long and loud about turning off the water to the building without warning anyone. — Turn about is fair play; she grumped loud and long about someone stealing her ladder when she was moving in which did not happen. The painters thought it was theirs and realized their mistake and put it back in the incorrect spot.

Someone had mismarked the main water supply which comes into the building as the cutoff for the second floor condo not realizing what they were doing. Our new neighbor’s water shutoff valve was hiding behind the water heater. The plumber figured out where it was after we complained about the water being off. He got bad information from a resident that was not here. Who knew?

I later apologized to my neighbor about raising much ado about nothing.

In the meantime Cheryl’s head is off in lalaland.

Sleep would be a good thing for her.

It is Pizza Tuesday.

Carpe Diem.

A Prayer for Self Compassion when Care Giving

I was reading the St. Anthony Messenger today which is something I rarely do. This little prayer at the end of an article about self-compassion struck me as apt. It also reminded me of Mom and something thing she told toward the end of her life. She said, “I think I need a mother.”

What she meant was she was tired and needed to have someone else be in charge. We all need to give ourselves a break.

At the end of her life I took control of Mom’s finances and I did not always do what she wanted me to do. Sometimes I thought her ideas where crazy (not the right word) and told her so and later I would feel guilty about it. I needed her to be the mother.

Sometimes I think about Mom when I am helping Cheryl. In many ways Cheryl is slowly, ever so slowly wasting away like Mom did near the end of her life. Sometimes it makes me angry, sometimes sad. I am always trying for better and more compassion. Some days it is just plain hard.

Maybe I need to give myself a break.

Carpe Diem.

Life is Relentless

There are so many things that cannot be ignored.

  • laundry
  • eating
  • cleaning
  • care giving
  • personal hygiene
  • taxes
  • utility bills
  • car repairs
  • joy and goodwill of others
  • entertainment
  • peaceful, restful sleep
  • health and healthcare
  • good coffee
  • visits with friends
  • learning to cook
  • how to tighten screws
  • learning new things every day
  • building maintenance and painting
  • love

There are many things that can be ignored.

  • political opinion
  • opinions of others about anything
  • judgmental people
  • messy desks
  • Facebook, X and other social media
  • Advertising and ads for drugs
  • Hurricanes in Ohio

Carpe Diem.

I Wish

I had a better memory of Cheryl’s funny little conversations that she and I have when we go out to eat or I drive her somewhere to be out of the house for a bit.

Over time – it took some time – I have come to understand the value of “going with it.” If Cheryl wants to call the painters tomorrow and get them going on painting our condo which is something she talks about occasionally, I merely respond with encouragement. Yes we should do that first thing tomorrow. I wish she did not have these odd thoughts but they are there. Those thoughts will be brand new tomorrow. Fresh to her. She will not ask why I did not call the painters, yet. She might not remember wanting to get the place repainted until next week. So I just go with it.

Her conversation on our way to somewhere is comical. It can be all over the place. It can be hard for me to keep up. She will tell me about cloud formations and what she sees in them. The next sentence might be let’s invite Mom for dinner tomorrow and maybe Jan will come. I talked to Jan this morning, she is moving to Florida. Alas both her mother and her sister Janice have passed from this life.

Earlier today I came back from riding my bike and she asked me if I had a good visit with Nancy. These questions which indicate confusion of previous conversations and where I disappeared to I will answer directly. I do not “go with it”. She accepts that.

I wish for a lot of things. As we take a walk today in great September weather in Ohio I wish she had more stamina. For the first time ever since I saw her sit and rest on her walker. She is doing the feet thing she does with her transfer chair. The walker is not as easy to control.

As she looks at her electronic picture frame full of photos I gleaned from Facebook and other sources she is anxious to make copies of the various photographs and give them to the people in the photographs. Cheryl does not understand where the pictures came from. I wish that she understood that, then maybe she would not be worried that others in her family may not have the photos.

I wish she was not confused but she is. When the medical student doing clinical work with Cheryl’s neuropsychologist yesterday asked her what month it is, she answered, May. This new doctor that Cheryl sees has a palliative care clinic. She wants to help Cheryl live her best life with her disease. I hope she is able to help Cheryl.

To Cheryl Christmas is next week. Maybe it will be.

Carpe Diem.

Hope-aholic

Interesting concept.

Watching the early morning newsy shows yesterday a guest mentioned this concept. The word stuck with me because I think all care partners are just that – HOPE-aholics.

Hopeful the incontinence will be less or gone.

Hopeful the memories will not completely fade.

Hopeful that she will be less anxious in the evening.

Hopeful that she will think she is home at night.

Hopeful she will sleep peacefully overnight.

Hopeful she will walk better with her left side.

Hopeful she will do her speech exercises.

Hopeful she will remember who I am during the day and into the night.

Hopeful she will not be afraid of what is to come.

Hopeful, always hopeful, she will be fine with staying in a respite situation while I travel to visit my sister.

Hopeful that I will not be anxious while away.

Hopeful that she will eat more.

Hopeful that she will not lose more weight.

Hopeful that visitors will make her days busy while I visit my sister.

Carpe hopeful Diem.

Friday – A Weird One

It started like a normal morning I got up at 7:30 or so and left Cheryl sleeping soundly in bed. I put the last of yesterday’s coffee in a mug and told the microwave one minute. I woke up the Wordle on my tablet and went out to get the paper. Someone, perhaps our new neighbor brought them inside the front door. I picked up Jeanne’s paper and her mail. She is 98 and does not go out much or downstairs much. I carried her stuff up to the bag she hangs on her door for that purpose. I noted that she had not retrieved yesterday’s paper from her bag. (Maybe I will check on her later.)

I watched the news on hurry up speed up as I had prerecorded it when it came on at 7 AM. There is still a lot of things going on that I have no control over. But at our little group of condos, the decks are fixed, the roofs are on and the trim is newly painted. The landscape folks want me to accept the quote for scraping snow and putting out ice melter. Winter is coming.

I started thinking about Cheryl, winter, gloomy weather, sundown syndrome and care partner stuff. About 9:30 AM I went to see if she was awake and ready for breakfast.

I found her in that in between sleep and wakefulness that we all experience in the morning. Usually my right hip tells me (You are old buddy boy. Move your ass.) to get up and move around. Cheryl and I exchange small talk and teasing for a bit.

“Do you want a kiss on your ear?”, I say.

“No”, she replies.

“What about on this cheek?”

“Okay.”

“Scrambled eggs for breakfast?”

“Sure.”

“Toast with grape jelly?”

“Yes.”

“Want any bacon?”

“Not today.”

“I am going to get your rollie chair. I will be back.”

She is more comfortable these days with me scooting her out of bed and into a transfer chair. We go into the bathroom for a trip to the toilet, pills and then into the kitchen for breakfast.

On this day when I sat her on the toilet she began to shake, sweat and cry a little. “My arms really hurt.”, she said. She initially complained about the toilet seat being cold. I ignored that because she often makes that complaint. Her hands and arms were shaking violently and I held the glass and straw for her to take the meds that I placed in her mouth one by one. We have done this before but not with the shaking action.

I had been gently rubbing her left arm as I helped her take her pills and she asked me to stop. She told me her arms were hurting. I got her a nsaid pain reliever that had been prescribed by her doctor for occasional pain occurrences.

It is a little chilly in Ohio this morning and although our thermostat reads 75 F in the bathroom it seems even to me a little chilly. In the middle of moving her from the toilet to the transfer chair, I got her heavy fluffy ugly pink bathrobe on her. I combed her hair and rolled her to the kitchen.

Apple juice, scrambled eggs and jelly toast later, the shaking and sweating were gone. Her arms did not hurt anymore. She still reports a little pins and needles tingling in her hands and fingers. The meds seem to be working but this whole episode was new. It began after I had gotten her out of bed with no complaint and onto the toilet, also with no complaint.

A cold toilet seat seemed to start everything. And that is very weird. Maybe I need a couple of these snazzy covers.

Carpe Diem.

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.