My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
I often find a song or melody that intrigues me at that moment. Kroger has been playing “Low” in some of their commercial advertisements lately here in Cincinnati.
Before that ad I had not heard the song before. It is a rap song. I have very few rap songs in my list of songs that I like. I do not have the same experience that many rap artists have, so, many of the popular songs with spontaneous rhyme and rhythmic lyrics do not connect with my old brain. “Low” does for some reason.
I told Alexa to play rap music. It selected a Hip Hop station that “you might like”. Perhaps I will listen later longer. Rap lyrics remind me of beat poetry. Recently Lawrence Ferlinghetti died. For some reason, in my younger years, his style of poetry interested me. I had his book of poetry – “A Coney Island of the Mind”. I have not seen it for years.
I vaguely recall that I had lent it to someone long in the past. Today I scrambled around to find a copy of a book of poetry that has probably been out of print for maybe sixty years. Amazon is a wonderful thing no matter what Donald Trump thinks.
I switched Alexa from Hip Hop to disco. “Staying Alive” is playing right now.
What do I do to pick myself up? Usually several things at once. Music certainly helps pick me up.
Music is very personal. Long ago I worked for a private company. One of the partners read a book somewhere that convinced him that music played over the PA system would lighten the mood and make everyone happy in their jobs. What a load of crap that book was. The music selected was what ever the office was using as hold music. MUZAK was a special broadcast on a side band of one of the local FM stations. It was perpetual elevator music. It was excruciating to rock fans like me. Christmas holidays brought a five hour loop tape of Christmas carols and other crap over the office PA system. On the second rendition of Mitch Miller’s jingle bells it was time to go home. Some were up-sot!
“Toes” is playing now. I told Alexa to play — life is good today. I need to get my toes in the water and my ass in the sand as soon as I can, pandemonium or not.
We were driving to get Cheryl’s second dose of the Pfizer Covid-19 vaccine so that we could, half of us anyway, become part of the herd immunity process to tamp down the CoVSARS pandemic pandemonium. I had stopped at a traffic light and looked to the side of the road to notice a road sign post with only the sign at the top. Someone had removed the Ohio Route 561 sign from the post immediately below the JCT sign. It was a naked looking post and my dad’s words. “vandals had removed the sign” jumped into my head. I could actually hear his voice.
Weird, I thought.
When I was first driving, some friends and I were tooling around Fairfax, Ohio heading to the Frisch’s on U. S. route 52 that ran through the sort of village center. We were still traveling on the residential streets. I was still learning that although you may have the right-of-way it is a prudent driver who looks to see if the other driver believes that to also be the case. On this particular day a teaching moment happened.
Another teenage driver, female but that fact is of no consequence, suddenly appeared in front of me in an intersection with which I was familiar and which I knew to be the main street. She had a stop sign which she had ignored. Boom, bam, bang, tinkle tinkle. I hit her hard enough that the car she was driving raised up off the ground, slid a little and slammed back down on the pavement. I was driving Dad’s 1960 Chevrolet Impala. She was driving some littler beige car. Her door was dented. Dad’s bumper was dinged a little and the fender had a scratch in the white paint. I was impressed with how little damage there was to Dad’s car and how poopy her car looked. But cars had bumpers then and frames to mount them onto. I had slammed on the brakes so the car had nosed down and lifted hers up. No one was injured.
Police were called by some neighbors. The policeman gave the girl a ticket. She complained that there was no stop sign for her. He pointed at the post and said it really did not matter for even though vandals had stolen the stop sign, I had the right-of-way.
When Dad helped me to right the accident report to the insurance company and file my version of the event with the State of Ohio, he said I should write that she did not stop because, “vandals had removed the sign.”
Today that jumped into my head. I had not heard Dad’s voice for awhile.
A simple batter cake dessert will perk up any parkie’s day. The last few times that I have made dinner I have taken the time to make a dessert. If that is a cake or anything other than ice cream and cookies, I start it first. Today I suggested another pound cake. Last time I bought any pound cake box mixes I bought four of them. I probably bought them at Walmart or on line from Amazon. I do not remember but this time when I suggested that and was holding a can of cherries thinking about how to jazz up the dessert, she says – I could make the cobbler recipe.
In our early days of marriage I was a student at Miami University. Neither Cheryl nor I was much of a cook so the Betty Crocker Dinner for Two cookbook was a bible to her. At the time I was less interested in cooking but more interested in eating. (and beer if someone else was paying for it.) College life as a married student was great. In addition to Betty Crocker we gathered recipes from friends and other sources. Some were disasters.
There was a spaghetti and hot dog recipe out of a church recipe book which was particularly offensive. Made more so by the fact that it made a lot of stuff so we kept trying to dress it up and make it more palatable when we reheated it as left overs. It is a fond remembrance of a disaster. We were young and poor. We did not throw food out unless it fell in the dirt and was unrecoverable.
The easy cobbler recipe came from the wife of a fellow married student. There were few of us on campus. Looking back it is remarkable that we found each other. But we did and they invited us to dinner one evening. They had a house in a nearby town. Janet made this recipe for dessert and Cheryl liked it and asked for the recipe. That was fifty years ago and she has made it many times since. Over the years she typed it into some word processor and printed it out. The original hand written recipe is stapled to the back. It works with any canned pie filling but we usually make it with cherries – Cheryl’s favorite. (Except if our grandson Gavin is coming for dinner. See grandma’s note above.)
I am unenthusiastic about this particular dessert. I do not know why. It is not bad it merely does not excite me as it does Cheryl. But it is simple to execute. I should have taken a picture of it before it went into the oven but I did not. Find your favorite mixing bowl and put in all the dry ingredients. I used a whisk to mix the dry ingredients first. I then made a depression in the middle and added the melted butter (or margarine.) I poured a bit of the milk in and mixed it with a handheld mixer and added the rest of the milk as I went along to make a medium runny batter that poured easily into the greased (Crisco or lard) 8″ x 8″ aluminum cake pan. The pan in the picture is of the same vintage as the recipe. (smiley face here)
We are having this dessert with spaghetti and meatballs, except I substituted pasta shells for spaghetti. As you can see below right, some of us like whipped cream on our dessert. I can personally attest to the great improvement by the addition of whipped cream. Vanilla ice cream, however, is even better.
It is February in Ohio and the birds are really attacking the feeder. We are safe and warm inside with comfort food and her favorite dessert. What could be better?
Cheryl keeps old cards as did her mother. We have had a long standing tradition of keeping old greeting cards in our home. Cheryl has kept cards for years. In the past couple of decades it became fashionable to send Christmas card – favorite family photo combination cards. These are especially precious.
Reading old Christmas cards
Reconnecting by reading old cards
Parkinson’s slowly robs many of those afflicted of the ability to make new memories. Not all who have Parkinson’s disease (PD)(parkies) loose their short term memory but Cheryl is in that group. This seems to be related to her organisational function as well. For her it is comforting to read old cards and think about those people and their families. If there is an annual letter she will read it to me and reminisce.
Cheryl brought the cards from her mother’s apartment after she died. When Elaine passed away from this life a couple years ago these cards along with other mementos and photographs entered our condo. Throughout the past couple years Cheryl has organised, reminisced and rearranged these. They are a comfort. Thinking about others and remembrance is her favorite pastime.
I am simply happy that it gives her pleasure and peace. The deterioration of her mental abilities is frustrating to her. Bit by bit she is robbed of her independence and the cruelty of the disease is the fact that she is aware of the deterioration.
It has been said before – Parkinson’s sucks. In this case it sucks greatly.
Today is Bob Torbeck’s birthday – my deceased father-in-law. As Cheryl remarked that today is Dad’s birthday I thought about posting “Happy Birthday, Bob!” on Facebook to see how many of the family might respond with thoughts and remembrances. When I woke up Facebook I found this from Ken my brother-in-law at the top of my “news feed”. It is a good remembrance.
Robert O. Torbeck
Memory Lane is open and BUSY this weekend. Christmas is often a reflective time for me. The images from my childhood have filled my heart all weekend.
Today is my Dad’s 98th birthday. It’s the 43rd time that we’ve celebrated/ acknowledged it without him. Dad and Christmas memories are synonymous in many ways (for me). As a young(est) child our Santa came on Christmas Eve. I am quite certain that I was totally geeked out waiting for Dad to close up the gas station, come home, eat dinner, have a cigarette, more coffee, another cigarette, tease about what’s for dessert……finally slipping behind the heavy drapery that entombed our living room (seemed like for months), to THANK Santa for being so generous to us Torbeck’s. Once Santa noisily took off from our roof the wrapping paper was flying. And I remember Dad seated in the corner grinning ear to ear with tears in his eyes? Were they joyful tears bc we kids were SO happy? Tears of pride bc he worked crazy hours to beable to create such joy for our family of 8? Or was Dad sad that he couldn’t do more? Some combination? As a dad I have memories of crying for each of those reasons over the years.
Another Dad and Christmas memory is the Open House / Lunch at the gas station on Christmas Eve (afternoon). A huge spread of deli meats, cheeses and all the fixings from Ron and Angela Stafford ‘s grocery store. Pkgs of cookies and candies from Dad and Daniel Torbeck ‘s customers. All washed down with Seagram’s 7, Canadian Club and or Hudepol beer. Friends, neighbors and customers typically all in one! As I mentioned Dad and Christmas memories are often the same thing.
A trip to Oldenburg for lunch yesterday opened this flash flood of images and memories. As we drove through the town I wanted Jill Semple Torbeck to drive, in reverse to achieve the FULL rear facing, 3rd row seat, smooshed against the window experience of a trip to visit Cheryl Paul J Weisgerber at school 😎. (Pre I 74). Anyways HAPPY BIRTHDAY Dad! Merry Christmas Dad, Mom and Janice Torbeck Farmer ! Thanks for the memories! I miss you all. Hopefully you and Mom are getting caught up on your Jitterbuging.
From Nancy:
Wow! Beautifully said!! Thanks for sharing your memories…. I only remember a few of the ones that you mentioned 🙄 I am always GRATEFUL to hear my family’s memories (my sibling’s and my children’s) bc I have so few 🙄 Love YOU and LOVE that you are so tender hearted, like our Dad was 😘❤️💚 I THINK that we had to sing too before the blanket came down 🤔☺️
From Dan:
Yes WOW is correct !!! Thanks for sharing those memories and reminding all of your siblings what a great life we experienced when that was all we knew. We did not realize how hard Dad worked until we were responsible for our own Families. I miss him every day that I go to work continuing the traditions that he taught me so many years ago. Thanks for sharing your Heart and Soul with all of us. Well Said Youngist Sibling. Merry Christmas to All and to All a Good Night !!! ❤️❤️❤️❤️❤️❤️❤️
From Debbie:
Oh My Goodness! Thank you for sharing your heart felt childhood memories. You expressed them perfectly! I’m feeling all of the same thoughts and emotions! So grateful for all of our families many blessings! ❤️💝
From me:
Happy Birthday to you, Bob. Thanks for letting me drive the wagon. Thanks for not staying mad about no bumper guards on the VW. Thanks for the opportunity to clean the men’s room. Thanks for letting me earn a few bucks on the weekend. But most importantly thanks for bringing Cheryl into the world. Many times through life I have often wondered what was the purpose of it all and more importantly what was my purpose. The answer to that question recently has been made very clear to me. Thanks to you and Elaine for producing Cheryl as a product of your love. She consumes all of my love and life purpose now as you know, so, thanks Bob. As Ken said, I hope you are able to jitterbug into eternity and Happy Birthday to you!
From Cheryl:
Every time members of our family gets together, we have lots of fun. We don’t need board games or card games. We remember lots of events, and those memories breed more memories. Most of the time, the memories are triggered by a long-lost photo that we find when getting out the Christmas decorations. For instance, there is a memory I have that I have told many times over the years– it’s a good memory. I was probably 4 years old and Jan was probably 2 years old, and she had curly blond hair. I had straight brown hair. Mom wanted me to have curly hair. It was Christmas eve. Jan and I were supposed to take a nap. Mom used some metal curlers to curl my hair for the occasion. Then she put Jan and me to bed in Mom and Dad’s bed. At the time, their bedroom was separated from the living room by a set of sliding pocket doors. So Jan and I were told to go to sleep. Jan went to sleep almost right away, while I tossed and turned…wide awake! In the pocket doors there were a couple of key holes that were just high enough in the doors for me to look through. So, of course I peeked in, and there, across from the door, was a doll-size table and chairs, with a baby doll sitting on each chair! I just stood there staring at my new toys. Then suddenly Mom opened the door right in front of me. Then Mom gently scolded me, and told me to get back in bed. She said that Santa was in the kitchen, and he wouldn’t be happy if he saw that I was awake. I went right back to bed and kept quiet until it was time for supper. This is one of my fondest Christmas memories.
All of our memories are precious. We preserve people we love by remembering them. Sometimes the memories are so powerful they cloud reality. When I look at Cheryl I see a younger version of her.
Thanks Ken for your remembrance of your dad. Thanks for reminding me of those trips to Oldenburg. I am at peace today with everything.
Today a mass was said at the Nativity of Our Lord Church in Cincinnati with Janice Farmer as one of its intentions. Cheryl had mentioned to someone at Nativity while she was relating her schedule of support group meetings that her sister had passed away in Florida of the virus outbreak there in August. A few days later we received a mass intention card from Nativity. “On Tuesday, December 15, 2020 a mass would be said with Janice Farmer as one of its intentions.” It is hard to explain how much this meant to my wife.
The covid pandemic has stopped and severely limited many gatherings and travel. We were unable to attend her sister’s funeral mass in Florida. We watched it on “live-stream”. Church services are disappointingly uninteresting on live-stream. It is better to be there and participate and cry a little and grieve with your family. It is better to gather and tell stories. A funeral mass is a ritual grieving. A luncheon gathering afterward is a celebration of life. All of this collectively allows people to express their feelings in a socially acceptable fashion. — Everyone cries at funerals, as many cry at weddings.
Cheryl chose to make this a celebration of Janice’s life. She brought this image shown above of her sister so that Janice could be present with us. This was a school mass. The church was filled with socially distant kids from the seventh grade. They were remarkably quite in church but created a presence in this special (to Cheryl) mass for her sister.
I, for my part, intended to take Cheryl to a late breakfast and allow her to talk and tell stories about Jan. Alas the small restaurant I wanted to take her to was closed. Their hours were severely limited due to illness in the staff. The virus finds us even if we do not want to find it. But all was not lost. We talked a bit about Janice while driving home.
Julie Krug played the piano and sang O come, divine Messiah! as a recessional. It is one of my favorite hymns. It seemed apropos of the sadness of today and hope for tomorrow.
O come, divine Messiah! The world in silence waits the day When hope shall sing its triumph And sadness flee away
Dear Savior, haste Come, come to earth Dispel the night and show your face And bid us hail the dawn of grace
O come, divine Messiah! The world in silence waits the day When hope shall sing its triumph And sadness flee away
O Christ, whom nations sigh for Whom priest and prophet long foretold Come break the captive fetters Redeem the long-lost fold
Dear Savior, haste Come, come to earth Dispel the night and show your face And bid us hail the dawn of grace
O come, divine Messiah! The world in silence waits the day When hope shall sing its triumph And sadness flee away
Cheryl is resting now. Later she will have her exercise and fitness class at Parkinson’s Community Fitness. This evening we will have pizza with our neighbor and I am sure Cheryl will tell stories and talk about Jan.
Janice also had Parkinson’s disease. She was one that Cheryl could commiserate with about the nuances of dealing with chronic disability. She is missed in this household.
My sister died in 2008. I have written about her before. She was our baby sister. I will always think of her as my baby sister.
She died of complications to pneumonia. It is hard to breathe with pneumonia. Not breathing well contributes to low blood oxygenation. Effectively one drowns from pneumonia. Laura had myelodysplastic syndrome. It did not kill her. I was her blood stem cell donor.
During Laura’s treatment it was discovered that she was allergic to virtually all the antibiotics they gave her as a prophylaxis. The treatment for pneumonia is antibiotics. The solution for MDS is kill off the bone marrow and as a result the patient’s immune system. The antibiotics given during this process put her in a coma for six weeks. The doctors supposed that she had veno occlusive disease, a liver problem with a low survival rate. She did not have that.
At the beginning of her treatment before I donated my luekoblasts to her, a nurse and social worker and I discussed the possibility that my blood cells which came with my immune response could actually attack her and kill her. The discussion centered around, how did I feel about THAT. I was certainly not excited about the fact that I could kill her. Presented as my call. A moral dilemma- Laura will die if I do nothing; Laura may die (sooner) if I do something. Looking back from the distance of thirteen years my reaction is the same – tears come to my eyes. [I had to stop.]
I remember thinking that I should ask Laura if it was okay if I killed her. I did not. This procedure is presented as do this then that then this and … you are healed. I suppose that they discussed with Laura the survival rate. She did not survive. I will always be somewhat skeptical of doctors and cancer cures. The fact that she died specifically of pneumonia is a distinction of no import. I was there when she took her last breath. I will never forget the silence.
My brother died this year in May. He was my big brother. I have written about him too. He was six years older than I less nine days.
He followed his dream job to Florida many years ago and from that job he went to others always in Florida. His last job was a coder/programmer for a subcontractor to Microsoft. He was a smart guy or at least that is my perception from little brotherhood. Every time I turn on my computer I think of Bill.
Families are complicated. One wants to believe that there is a close personal connection between siblings in the family but that does not always occur in life. Gaps in age, education, life choices, geography and beliefs tug at simple family ties. Our family is no different. We held no animosities but we did not live in each other’s lives.
Our parents Virginia and Robert died about eight years apart. Dad passed away in 2007 about a month before Laura. Mom passed away in 2016. Every time I throw away a box from Amazon or Boxed Up, I think of Mom. I hear her voice, “Paul, don’t throw away that box! That’s a good box.” Mom kept a lot of crap in boxes.
I think of Dad in various situations. He was what we would call today a hacker. When I was a kid our basement was full of old electronics. When he retired he became enamored with computer equipment. He spent a lot of time futzing with computers and programming them. Visual Basic and he were friends. He was always working on something called his Bingo Program. He occasionally journaled too but although I inherited all his computer stuff I have not found any of his writings. I think of him when I write random comments in this blog/journal of mine.
Now it is only Joyce and me. We talked yesterday for about an hour. We did not talk about anything special. I called her merely to hear her voice. It has been thirteen years since our original family group started dying off. For some reason it is important that I hear her voice more often.
She mentioned in our conversation that she is not very excited about turning 70 this year. (Wow has it been that long?) She sent me the picture below many years ago in a birthday card. Laura is in the middle. In her note she wrote – I’m so glad you are my brother. I am so glad you are my sister, Joyce.
Remembrance of occasions and enjoyment of those fade with time. I have often pondered why I remember some things and have absolutely no memory of others. What we were excited about on this occasion is lost in my memory. Joyce found the picture and sent it to me. Obviously it is Christmas time. I am swallowed up in abject joy and laughter. No memory at all about it. I am grateful for the picture of us.
Life and death? — Dad was not afraid of dying. He said as much to the doctor when he was given the news that an X-ray photograph of his abdominal area revealed a mass on his colon. I do not fear dying. I worry that Cheryl will be provided for after I am gone. I wonder if Laura would have lived longer if she and I had not exchanged blood cells. I wonder if she would be alive today if her doctors had simply been smarter about what was going on in her body. Maybe she would not have spent six weeks in a coma. … could have, would have, should have.
Laura told me about a month before her death that my stem cells had taken up residence in her bones. Our life experiment was working. I speculated – how do they know? Her response was – I think because they can look in there and see little X’s and Y’s. Yes, I imagine they could detect those somehow.
In the background of the conversation between Joyce and me was a thought like, I should have asked him (her) that when Dad was still alive, when Mom was still alive, when Laura was still alive, when Bill was still alive. As I talked to Joyce I thought about how short our time on Earth is. Seventy years seems like a long time but it is not. I thought about how fragile our existence here is. At this time in our life a virus threatens lives. Ask those questions. There may be little time to get an answer.
Other morose thoughts — In his late years, Dad would not hesitate to tell you that he was older than his father. Dad’s father died when he was 82. In Dad’s mind he felt that he would live to be 82. As he got closer to that age, he resigned himself to the fact that his life was almost over. He was not worried about dying. His only concern was, would it hurt? I think that was his only fear.
Pain is the only thing that makes me uncomfortable about death I believe that I do not feel pain as others do. I understand Dad’s point of view about pain. I wonder if it hurts to drown. I wonder if it hurts to die of pneumonia. Does a sudden massive heart attack hurt?
Death causes a gap in the family. I have become very aware of that gap in our family. Joyce and I are closer. I believe we are. It is just us now.
Adjunct_Wizard 