My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
Do all you can while you can. Life is a one time deal.
Carpe Diem — longing for the old days is wasteful. While it is fun to reminisce about previous experiences today is here. Stay tuned into your surroundings.
This Post card from Bishop John H. Vincent
I wish to resolve to do this care giving thing better:
Goal:
my attitude to be positive, my hands to be gentle when administering help and my heart to be full of compassion. [What she sees, hears, feels and tastes is real to her no matter what time of day.]
Plan:
Understanding and education of symptoms and what can cause those symptoms. Keep educating myself and make no assumptions about cause and effect. [This can help me to understand that I do not know all the answers, that only she knows how and what she is feeling.]
Action:
Be supportive when necessary, explain if asked, and lead if called upon. [It will be tempting to know the right answer but to find the patience and empathy to determine what is called for at any particular time is wisdom to be sought after.]
Some Specifics:
When walking with Cheryl, stroll. She moves slower than she once did.
Do not tune out the surrounding world and merely wait for the next event. Seize down time for exercise, education and entertainment but do not regard the environment as an intrusion of self.
Be more upbeat! (That is not specific. (smiley face here)) Look for the gold in every day. Leave the tarnish for yesterday.
Parkinson’s still sucks. Let’s make the best of it in 2021.
I ride to empty my head and relax. This poster captures how I feel riding my bike generally.
Lately however I have Cheryl on my mind I’m unable to assure myself that she is okay while I am away.
It distracts me from the Zen zone that I get in. Runners call it – runner’s high. In my case it’s bikers butt.
Getting to it can take several miles. But if get there it is all smiles inside your head.
There is a zone when you ride and a rhythm in your brain as you strain to listen to a podcast.
Or avoid the mom’s with small ones who refuse to cooperate that day but are doing their best to rest little feet that are not as fleet as mom’s are.
I ride the same circle and listen to whatever on my Bluetooth earbuds that did not come from Apple.
A book takes too long but a song or two or three is just right and Pandora tells me to buy their service with out ads for five bucks a month but with fifteen seconds of ads it is better than commercial TV and it is free.
If I want words about nothing or about something a Podcast is just right and a delight. It can be insightful if it is about something or frightful if it is about something else.
And eventually it is noise and I am in Zen zone and cone of self and the world is separate and indistinct.
It is a joy to ride with the wind at your back. It is like flying but slower.
Electra Townie 7D – cheap efficient and fun
This is my bike. I am not trying to get anywhere. It is just there to ride and hide for a bit from responsibility and duty when it calls.
Glamorous it is not but it is what I got in addition to bike tights and the rest of the kit to look fit.
Ten miles is typical and twenty miles is magical. And then the podcast is over. It is sad but I am glad that for a bit I felt very fit in the zone.
Most little things are not important to care about. Our niece, Natalie, who cleans for us once said you are neat people in response to a comment from Cheryl about how quick and efficient she is at cleaning our place. She is right about that Cheryl and I are neat people generally. Clutter of newspapers and magazines will appear during the week but by weekend they are in the recycle bin. I get up and make the bed every day. While I am cooking dinner which is something I find myself doing more and more often these days, I put things in the dishwasher as I complete a task. We put the dishes in the dishwasher right after using them.
I’m not big on dusting which is why I hired Natalie to do that for me but since she has been dusting and cleaning every couple weeks, I have spent time spiffing up my office. Lately I have noticed a slight changes here and there with Cheryl’s behavior about neatness. It seems to be another sign of the degradation of mind caused by the Parkinson’s disease. Something else for the caregiver to do.
The inconsistency of PD is often confusing to me and always frustrating for Cheryl. I have mentioned this before. Paul McCartney has a new album out and on it a song titled “Seize the Day”. Absolutely one should seize the day but often with a parkie one must seize the moment. Her day might be disconnected from reality one moment and acutely aware twenty minutes later.
Mail… junk mail
As one gets older the junk mail increases. At least that is my perception. Cheryl used to be able to discriminate junk mail advertising and new credit card offers without opening the envelope. These days each envelope is opened and ruminated over. I think that’s how the Readers Digest started to get delivered. She may have asked me in a weak moment – Do you like Readers Digest? The subscription has been renewed until 2025 or so. Oh well. It was cheap.
Perpetual Christmas card list
Finally it is the end of an excruciating three weeks of getting the Christmas card list in order and sending them out. Cheryl has been looking at printing out and re-looking at the list of addresses she has from 2018, 2019 and edits from this year. This is all made so much harder by the fact that the original list of addresses is kept in an Access database which makes little sense to me. The list itself is a couple names short of 100. Both Aunt Alberta the last of my father’s core family and Aunt Ruth the last of my mother’s core family have passed away in the past twelve or thirteen months. Cheryl’s sister Janice is also gone, as is my brother Bill. Things need to be adjusted.
This exercise is more than just making sure that the address list is accurate. It is a time to think about those folks. Maybe a letter is needed for the card. Maybe a phone call is needed to get current. To me it’s about the list. To Cheryl it is more than that. The sewing machine becomes desk to finish off the last 30 or so cards that require extra thought. Lots of distractions jump in the way of sorting through these last cards.
Is this one of those “Aha” moments that a Facebook friend talks about? Aha! She is not able to focus her thoughts long enough to ask for help. When she asks for aid, it is very hard to understand when I must not push back when she wants to do it differently. I was not able to accept micromanagement in my working career either. This is frustrating. There are four more addresses to go.
We wrote a generic message to those who were left to go. We did this in the car riding to visit my son yesterday. Today when I asked her for the notes she took so I could write it up, she did not know what I was talking about. I had to be very specific in my discussion. But we got there. This is the note:
I have written this short note to everyone on my Christmas card list. My Parkinson’s disease is making typing and writing more difficult as time progresses. So, even though I would like to write a longer note, I cannot do it. I do want to find out how everyone is doing this year, so, if you are interested please send a text message to 5——–0 or email to me@Gmail.com and Paul will set up a Zoom meeting to keep in touch.
Thanks to you all and have a very Merry Christmas!
Cheryl
printed 6 to a page
I probably spend too much time trying to understand why I am angry (at myself) and frustrated (with myself) about a stupid list of addresses. I printed the labels – weeks ago. I just went in to check on the last four. She is handwriting an address for a fifth one to someone not on the list at all. Carpe Diem…
Questions
In a Facebook Parkinson’s disease caregiver’s group – a person asked in a posting if anyone else got driven crazy with questions. I am not. I wish I was. Occasionally she will wander down a rabbit hole and come out the other side anxious about loosing a piece of information, email draft, telephone number or address.
What day is this? Is Scott going with us? What do you think Jan wants on her pizza? Are we staying here or can we go home? Did that guy bring my pills yet? … I do get these sorts of questions.
There is very little straight line activity in Cheryl’s world. Her world has many distractions along the way.
I have read and re-read this several times. I am whining but there it is – a couple weeks in the life of a PD caregiver. It certainly is an odd disease. And it sucks!
This particular image has nothing whatever to do with anything I have written here but amusement parks used to have photo booths in them. Remember photo booths?
Two Young People in Love OR We had Dark Hair Then
There is no value to looking backward in time. It is, however, enjoyable to reminisce about days gone by.
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.
Melissa Comer and David Weisgerber got married in July. They first met in high school (upper left) and life took them in different directions for many years and this year they were married.
They have a blended family. Two different mothers and three different fathers later here they are as a group. It is a wonderful group. They have a busy houseful of teenagers and two dogs and a female feline named Thomas. Thomas sounds like a small child crying and occasionally says, “Mom” in a way that will make you look to see which kid is trying to get attention.
Luke is interested in photography. [far right in the middle picture] He put this collage together for me. It tells a love story spread out over many years. Ellie’s photo-bomb selfie in the lower left expresses the joy, happiness and camaraderie that all the children seem to have when they are in their home.
So enough of this crap… Let’s celebrate two people who found each other again.
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.
This morning she says to me, “Are we ever going home?” … in an angry tone.
It is kind of an odd conversation but more common conversation to have in the morning. Because she seems to be in a different place in her head, even though she can see all of her possessions and her earrings and her clothes et cetera nearby.
It’s just really, really interesting and disturbing. I am unsure of how to react sometimes and what to do about it. This morning I did pretty much nothing and told her that we were in fact home. This is where we slept last night.
Then I asked her if she needed my help find a shirt or anything like that to put on and that seemed to deflect her mind. AHA – so maybe in the future. What I will do is look for those opportunities to answer her question and then move on to a new topic because she doesn’t seem to get lost when I change direction. She doesn’t insist on talking about where we live and why we are there and etc. Poof! She looks for a shirt.
In the past few weeks we have had conversations about dreams, Jan and furniture. She has a different reality – which is probably the wrong way to say it – sometimes in the evening, sometimes in the morning. It is difficult for me to ignore the fact that she perceives something different than I do. My natural tendency is to correct her perception. (What can I say – I am male. It is built into my jeans. Yep – purposeful use of the homonym.)
I guess we are creeping toward the non-benign form of Parkinson’s disease. Sadly.
I have told her many times that I will stay close by to help guide. She seems to understand for now.
Some days it is hard to find any humor. We use to tease each other. Now she does not understand and thinks I am being mean.
As we travel this Parkinson’s journey the engineer in me is hunting for a fix for various things that arise. Lately the sometimes appearance of “Sundowner Syndrome” (SS) has me hunting for information and hoping for a solution. This Web MD article has some useful tips about how combat Lewy body dementia which can be a late stage Parkinson symptom. We do many of the suggested things such as, physical exercise, increased lighting and redirecting. Some actually seem to help.
Many if not most PD patients have trouble sleeping. I think Cheryl may be in the “most” category. These are just perceptions on my part but it seems she has about a three day cycle. On the third day she sleeps well at night. Poor sleep seems to contribute to SS.
Caregiver and sleep
The role of caregiver is a tiring one. One can spend much of the day assessing mood, movement, confusion and cognition. In the background of my thoughts is a constant “what am I missing” anxiety. In most cases it is a misplaced anxiety because I have become very good at ignoring my own needs and thinking ahead for Cheryl. — Oh, wait… maybe I forgot my own needs?
Stolen from the WWW – I like it!
Recently I began to think seriously about what I need to stay healthy both physically and mentally. In the summer and warm months I enjoy riding my bicycle around. It is a love left over from my childhood. When the kids where teenage I took it up again for a few years. About three years ago I did it once again. It allows me to empty my head. I listen to a book or podcast while riding and pretty soon a couple hours are gone and I have given no thought to Cheryl and PD. That is until this year, the year of the pandemic and the year of fear and misinformation.
It has not happened for a some time but approximately 3 years ago and about two years ago Cheryl had a bad episode with fatigue and meds. I took her to the hospital the first time and the fire department took her to the hospital the second time. Both cases where less than satisfactory experiences. Hospitals are not set up to deal with Parkinson’s patients. PD patients have very special medication needs. They have very specific medication needs. This year of pandemic quarantine and isolation and the free flowing misinformation and social media idiocy, whenever I rode my bike around my favorite path I was often worried about Cheryl. I was unable to let go and empty my head. I kept track of time. It was exercise and not relaxation. I became totally focused on keeping her out of any sort of hospital setting and as a result I was unable to dissociate from that thought train.
Even caregivers need proper sleep. On those days previous that I had ridden my favorite route without any thought of Cheryl and her well-being, I slept well. That total relaxation and refresh seems missing to me. I have asked my niece and friends if they would be willing to sit with Cheryl while I disappear for a bit of time. Time that I have come to think of as do-nothing time. I am developing a network of care for her and me.
Mindfulness and resting conscience
It is not sleep but a relaxation technique. Many folks are able to meditate and pray and give their conscience state to something else.
When I was a kid I attended a Roman Catholic school. There was a book called the Baltimore Catechism that we all spent time with. In it or may be with it us kids learned how to pray. This is from Wikipedia — Prayer is an invocation or act that seeks to activate a rapport with an object of worship through deliberate communication. In the narrow sense, the term refers to an act of supplication or intercession directed towards a deity (a god), or a deified ancestor. More generally, prayer can also have the purpose of thanksgiving or praise, and in comparative religion is closely associated with more abstract forms of meditation and with charms or spells. On social media and SMS messaging people tend to add little icons of hands pointing up — in the sense of “praying for you”.
None of those prayers written in the Baltimore Catechism do it for me nor do hands pointing up icons give me peace of mind. I empty my head as best I can and think about good times past and try to not dwell on those and long for their return. I try to empty my head of distracting thoughts about the future which tend to go toward death and wondering what that is like. I try to listen to my heartbeat and let go of anxiety about Cheryl’s care and stay in the present for her — not dwell on what unknowns may be brought by the future.
When I am able to do this the day looks fine.
Foggy or bright? — each morning I get up and attempt to discover how Cheryl is doing that day. Last evening for example we had dinner with our friend Jane who joined us for spaghetti and conversation. Towards the end Cheryl felt like she had to lay down and rest. Jane helped me clean up the dishes and she returned to her home across the hallway. When Cheryl returned her view of reality was confused. She wanted to know if we were ever going to return to “that other place.” We had a long conversation about where we live. It is as though she perceives two realities. She knows where we live but she wonders why we do not ever go home.
Foggy day
We later played Scrabble for a diversion and she went to bed. In the morning she seemed to have no memory of any of that confusion from the previous evening.
I get anxious when she ignores things that I want her to do so that she can get a good night’s sleep. And then I remember that I may not know all the answers. I take a deep breath and try to help her move slowly toward the bedroom at night.
The sun-downers thing that seems to be developing is different at each presentation. Sometimes it manifests as an urgent need to complete some task and mentally she is unable to finish – which makes her anxious – which makes her try harder – which makes her anxious – which makes her frustrated – and so on with a mental state that is almost manic. This may keep going even if I manage to direct her into bed. Her mind does not easily let go of the circular task/completion anxiety loop.
It made me think of Randy Newman’s song from Toy Story. I recently heard it on some news program.
You’ve got a friend in me You’ve got a friend in me When the road looks rough ahead And you’re miles and miles from your nice warm bed You just remember what your old pal said Boy, you’ve got a friend in me Yeah, you’ve got a friend in me
You’ve got a friend in me You’ve got a friend in me You got troubles, and I got ’em too There isn’t anything I wouldn’t do for you We stick together and we see it through ‘Cause you’ve got a friend in me You’ve got a friend in me
Some other folks might be a little bit smarter than I am Bigger and stronger too, maybe But none of them will ever love you the way I do It’s me and you, boy
And as the years go by Our friendship will never die You’re gonna see it’s our destiny You’ve got a friend in me You’ve got a friend in me You’ve got a friend in me
– Randy Newman, Toy Story
She will always be my friend. I just want to be hers and give her a smooth path.
I started writing this story in 2005 and a little more in 2007. I wrote notes about my impressions of things as Cheryl and I took my mom and dad on a vacation trip to Myrtle Beach, South Carolina. Looking back through the distance of fifteen years is not as difficult as I thought it might be. As I read my old notes – I am a terrible journal writer – I can see the inside of the condo we rented in N. Myrtle Beach, my new Dodge Intrepid, the IHOP near Mom’s house, Dad’s brown pajamas, both of them in the back seat of my car, lots of images.
My notes are not so much a chronology of the trip as they are notes and impressions of conversations with my father, conversations with the person I chose to be with for the rest of my life and thoughts about the situation as it unfolded.
I now spend most of my waking day and much of the night as caregiver to my wife of fifty years who is dealing with Parkinson’s disease. In some ways this trip was training for my role as caregiver. I didn’t know it at the time. Also at about this time 2004 to 2005 Cheryl first presented early symptoms of PD. We merely did not know the diagnosis then.
Cheryl awakens in a different place each day. She thinks that multiple people bring her morning meds to her. She sees multiple copies of her things. Why do we have so many bathrooms?, she asked me.
It takes a bit of time and a bit of routine for her to get a grip on reality. I promised to not tease her and always tell the truth. Sometimes her grip on the actual world around her is tenuous.
It makes me sad. This behaviour is presenting more lately. Mostly in the morning but sometimes we have talked about it at other times as she works through her perceptions.
Adjunct_Wizard 