How do you know?

How do you know when it is time for an extra care facility? Maybe it is time when she brushes her teeth with Noxema and is not repulsed by the taste?

Maybe it is time when a magazine arrives in the mail and she immediately takes it apart to sort and re-sort the pages into a file.

Maybe it is time if she suddenly at 12 AM becomes interested in calling her long dead grandmother to find out where she lived when she was a little girl and is inconsolable until she can find the phone number.

Maybe it is time if you recognize in yourself that much of your patience with God’s plan is no longer available.

Maybe it is time when she is no longer eating enough to sustain life and you begin to think that perhaps others may be more knowledgeable than you at finding a solution to nutrition.

Maybe it is time if you simply want to help her more than you are capable of doing.

Maybe it is all or none of these ideas. Maybe there are other thoughts that have crept into your mind as you realize how deep your love is and how shallow your skill set is.

Living apart will probably be as hard as living together for the first time when we joined ourselves in matrimony fifty-three years ago.

It makes me sad and anxious.

Carpe Diem

Little Incremental Changes

This morning I am thinking about the little incremental changes this disease of Parkinson caused in Cheryl. The trees in these pictures are maples and they are turning with the season. It is not apparent in the big picture as they show below but zoom in and each individual leaf has a tinge of red around the edge of the leaf. The green still remains in the core of the leaf. Little incremental changes as the leaf begins to shutdown for the season.

Tonight and on days since I started this essay, I am thinking about the little incremental changes this disease of Parkinson that has invaded the person I most want to be with, the person where I am home, has caused in me. Our green area is smaller. And yet at the same time it is still green.

It is my goal to talk to her on a level that is her. Sometimes her behavioral response to some situation can appear childish to me. It has only recently come to me that I must ignore that perception and talk to her as I once did. Almost every morning when I wake her she will ask, “Can we still get to church?” or “What time is church?” I used to respond with, “There is no church today.” Sometime in the past I decided that response was unhelpful. These days when she asks me about church I take that to mean, “What is on the agenda for today?” She has little memory of what we may have discussed doing on the previous evening when we went to bed.

Aphasia appears often. When she is telling a story it is very important to her to get the names dates and places correct, even if she is way off the mark. Her mother is no longer on this Earth nor is her sister Janice. Cheryl tells stories about them or visiting with them in the present tense. Once in awhile I might tell her that her mom is in heaven. She will respond, “Are you sure?” That question reminds me that it is unimportant to correct her perceptions. I have a difficult time resisting the natural male response of – bullshit that is not the way it is.

It appears to me – just observation – that although she can read, the words are mostly meaningless. It the morning over breakfast we look at the newspapers. For me that is the Wall Street Journal. For her that is the Cincinnati Enquirer. I have two observations; She does not recognize that they are two different papers. She is unable to comment on articles that she may be looking at in the paper. (I have asked.) The particular article might be about some city council fiasco. She will tell a story about Sr. Janet and what the newspaper tells Cheryl about her job with the parish office.

I know there is some green still left in the middle.

I am thinking about how it has changed my focus. I used to worry about how late she slept in the morning. The why of that worry always comes back to how much sleep I will get that night. Those two ideas are connected only in my mind. They are not connected in practice.

It changes my perspective. There is a bigger picture. Just like these trees on our property, when one zooms in one sees the differences in the leaves but when one zooms out one sees beauty.

It changes my interest. What can I do to enable her to reminisce even if her memory is weak? Perhaps I can aid her reminiscence. Comment about her stories to get her to tell me more.

It changes my observation of the universe. There is beauty everywhere you look. Cheryl is always telling me about the moon when we are driving somewhere. I look too. She can see the moon in the clouds. So can I if I look carefully and listen to where she says she sees it. A shape in the clouds looks to her like the moon. I long to see through her eyes.

Maybe I could read to her rather than watching her struggle to understand printed words.

Carpe Diem.

It’s Near Time for Good-byes

I started this a couple days ago while sitting in the airport and elsewhere. I mulled over many thoughts that I had about family and siblings and care giving and end of life. A great visit with my sister and only sibling alive comes to a close.

Joyce asked me if I was shifting back into caregiver mode. I am. I also think that I never left that mode or mood. I was far away but the kids were close by for Cheryl. David took it upon himself to visit his mother every day. I was able to relax a bit.

In the collection of photos below in the picture immediately above the lighthouse there is a little white speck to the left of center in an otherwise empty ocean. That is a whale spout.

When I return we ( our family) will be planning, thinking carefully about future care for Cheryl. This was a test for us all. There are lots of imponderables. What is best for Cheryl? How will we finance it? How will we respond to her needs?

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.

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.

A Quiet Monday

My mother always hated Monday. Even after she was long retired from her working career she would refer to Monday as Bloody Monday. I never understood that attitude.

This Monday morning Cheryl is sleeping in the other room. Quiet after she had been up concerned about strange thoughts just before midnight. She was worried about when Jan and Nancy were going to pick her up. Jan has passed away. Her thoughts are often very jumbled up these days.

Yesterday evening she was very anxious about our nephew Mark and his girl friend Jill. This was brought on by us driving past the FedEx terminal near where we live and Cheryl asking about Max working at FedEx. I responded with the fact that Mark, our nephew, worked for FedEx. I asked if she meant him. She said yes, I think so. And this launched her into several hours of on and off conversation about him and his girlfriend Jill (I quit correcting her ideas) and birthdays and presents and on and on.

After awhile it is very hard to deal with random nonsensical conversation.

I convinced her we should practice her voice exercises. We shouted MAY, ME, MY, MOW, MOO for several minutes. And tried to make AH last for ten seconds. Parkies do not breathe deep. In Cheryl’s case she often has very little air behind her vocal chords.

We rounded out the evening by watching 60 Minutes on CBS and then the movie “80 for Brady” (for the 53rd time).

I am starting to wonder where she has gone in her mind. She has exhibited several unusual behaviors over the past couple weeks but I disregarded them to simple tiredness from her current PT schedule. Physically she seems to be moving worse so none of this seems to me to be helping her.

A few days ago she sat in the rocker in our living room and stared out the window at the bushes in the overgrown lot behind us for two and a half hours without moving. She did not speak during any of this time.

She puts together random collections of pieces of paper and photographs. Some of these I have taken out surreptitiously of her circulation and put them on my desk to look inside her mind. I think it may be scrambled but occasionally I find little gems.

These pictures of Dad were attached to one of Cheryl’s lists of stuff: Moeller; Dr. & Mrs. Fred Kraus; Jeane Krause; Mr & Mrs.; Barb Kalb; Find Barb’s Christmas card; when I find the list compare the list to current addresses for all; Lists <-> Krause, Torbeck, Driscoll, Weisgerber, Welch; Make a list – Cheryl Torbeck, Cheryl’s friends… None of this has anything to do with these pictures which were probably collected for my father’s funeral in 2007. I am glad I found them.

Maybe one day I can find her mind for her and give it back to her.

Carpe Diem.

Today – Is it Christmas?

Yesterday evening when we went to bed she told me that today she wanted to put up the Christmas tree. My response was sure tomorrow is a good day for that. She slept undisturbed overnight.

Earlier after a breakfast of pancakes and fruit she told me that today she wants to put up the Christmas tree. We have a niece who has a party theme of “Christmas in July” around her newly rehabilitated back yard pool. (Jill lives five doors north of Sherlock Holmes. For those who read Sir Arthur you can deduce her address.) I have been keeping Cheryl apprised of the decorating progress as Jill has posted pictures on her Facebook Party page.

We went to Jill’s party last year. Of course we will go again this year. I will not remind Cheryl about her idea to put up the Christmas tree. I want to see if she remembers it for a longer period. (Overnight does not count. She often remembers her dreams from overnight.) And to be honest about it I do not want to put it up. Only I will be doing it and I have to rearrange furniture to do it.

So today I will live in terror of having to put up the Christmas tree. Or I could embrace it. The jury is still out.

Carpe Diem.

I Suppose it is True

One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Today Cheryl took my Breath Away

Allison is a wonderful young woman who has been cutting and styling Cheryl’s hair for some time. She had been operating out of a salon on the second floor of a business front in our old neighborhood for some time. Many years ago when Cheryl had foot surgery I asked her if she could come to our house and do Cheryl’s hair while she was stuck in a chair waiting for her foot to heal. Allison said of course she could. She had several clients that she took care of at their house.

Cheryl visited her in the salon for a couple years after her foot healed but eventually it became too much – the stairs. I asked Allison if she would visit us on a regular basis and a new relationship of service started.

As Allison was getting ready to leave and I handed her a check she said let’s set up a date for here next hair visit. I got out the calendar of all knowledge and we looked at August dates. Weeks-wise the next date would be August 23rd but that date interfered with something for her son Paulo. She suggested either August 30th or September 1st. I picked August 30th.

August 30 is the anniversary of the day we met. It was August thirtieth of 1966. It was a blue moon. Cheryl remembers that. I would to report to you that I remember it succinctly but I would be lying or at least making up stories about my youth. She remembers that it was a full moon. That fact caused me to look up astrological data to find out it was a blue moon. It is a blue moon this year too. I told Allison the story of our meeting.

After Allison left Cheryl talked about her death, something that every human is able to imagine. Cheryl said to me, “She is such a nice young woman. She didn’t mention that I won’t be here then.”

I replied, “What do you mean by that?”

She said, “I will be dead by then.”

I sat down to have a conversation but I was too dumbstruck to speak for a minute. I wanted to know where that thought had come from. She did not have an answer but she was adamant about it. “I’ll be here in spirit”, she said. (Wow. I thought.)

I don’t know what to make of that idea that she has or had for that moment in time this morning. What I do know is that I will be more alert to her needs for the next few weeks.

Carpe – blue moon – Diem.

Home Now

We are home now and I have been thinking about it all. it was a great trip. Are there things I could have planned better? You betcha but we adapted and got through it all.

A few things that I would do differently…

And before I left I updated the Linux Gnome interface and for the first time in a year or so turned that computer completely off. Gnome is broken. That computer operates like an old DEC PDP 11. I have a project to keep me busy for awhile.

Carpe Diem.