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.
Both of these control where things are placed by people who do not have Parkinson’s Disease (normies). Both of these control where things are placed by people who do have Parkinson’s Disease (parkies).
Is there an easy caregiver solution to the frantic search for …( name item here)? Nope! Unless you carefully watching what movement occurred immediately prior to the loss of (name item here) you should search an area with the most light.
Add some humor to the search. PD sucks and stuff is lost along the way.
What people mean when they say things. I have never been good at interpreting other meaning from written words. In verbal conversation there are extra sources of information. Facial expressions, body, vocalizations and tone add subtle differences in how the message is delivered. Words are words.
Twitter and Facebook are confusing because people write as though they are in the same room talking to you about something. Talking about something they are passionate about, they are able to recognize they are not in the same room talking and write in ALL CAPS to indicate emphasis. Most do not recognize that old teletype machines printed in all capitalisation. Sometimes the emphasis is lost.
Many years ago I was teaching math as an adjunct for a for profit community college style school operating in the city center in an old bank office building. The CIO who was located in New Jersey sent out an old policy memo about corporate computer usage, the student records database and other topics. The memo itself was full of misspelled words, grammatical errors and IT WAS PRINTED IN ALL CAPS. It was a plain text file (.txt) not associated with any word processor. I accepted the fact that it was corporate policy and therefore worthy of close scrutiny. But it was attached to an email to ALL in the company. I also understood based on my background that this policy paper had probably been written long ago – pre-Word or Wordperfect – and as such had not been proof read since. Many in management positions have a hard time with others, translate underlings, correcting their work product.
Many in the faculty room between classes checking email were giggling. The English teachers in our little school, especially so and some of us math teachers were amused. Language that is to say written language in policy statements should be precise otherwise ambiguity results and the policy for good or bad is ignored.
In a previous job with a boss who was also a friend, I would correct his errors and return his memos to him privately. It was something between us and over time he would give me his stuff to proof read. Sometimes I commented on the policy itself but usually I merely corrected misspelled words, grammar and adjusted sentence structure to enhance readability. This experience made me comfortable enough to suggest to the CIO in New Jersey that he should consider importing old policy memos into Word and enabling the spell and grammar check features before sending them to ALL. I also highlighted many of the grammatical and spelling errors and saved that to a second – AdobePDF – file and replied to his email but not to ALL.
He replied to me with, I do not like your attitude. I did not and still do not have any attitude about his mistake. People make mistakes even highly educated people. In my reply I pointed out that it is very hard to derive attitude from an email and if he needed any further assistance I would be happy to help. He did not reply to my offer.
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I suppose I gained this propensity to read language in a precise fashion from my father. Early in my working career I worked with my dad at the same company. Once early one morning we were to have a meeting about a project we were both involved in. I arrived early for the meeting coffee in hand. On the green chalk board at the end of the conference room was my father’s handwriting. Printing actually, Dad rarely wrote anything in script, it said – Gary Dean is two four letter words. This sentence was so “my father” that it made me laugh out loud. Dad dearly loved puns and double meanings. Mr. Dean was Dad’s immediate supervisor and I suppose unfamiliar with Dad’s humor. He displayed displeasure with anyone scribbling on his board before the meeting began. The rest of us giggled.
I read for enjoyment. The best authors are able to make me see what they imagine in their mind as they write. The funny ones are a treasure.
It is an odd conversation. Made more odd because it was quarter after six and I was in the middle emptying my old bladder for the second time that morning. Standing over the commode about halfway there, the door pops open and Cheryl looks at me for a moment then backs away and closes the door most of the way. I finished up and flushed the toilet.
As I came out of the bathroom, she asked me – you will have to show me how that works sometime. I replied – do you mean the toilet? No, she said. That elevator thing that you came out of. You will have to show me how to work it. Where does it go?
It just comes up from the pill area, I replied. Good! Can you get my pills for me? I’ll take them but I have to go first. She passed me and closed the door to the bathroom.
I got the morning meds from the kitchen. It was not too early. This was the day after the “fall back” idiosy that we have perpetrated on ourselves to get more golf daylight after work. Parkies have a problem with the shift. It is easier in the Autumn but it is still there.
The next day
It had been our usual (for these days) night. She headed to bed at 10PM after taking her night time meds. She laid for a while with an icepack on her head and eventually gave me the icepack to return to the freezer after several trips to the bathroom.
Over night she got up to go once or twice but returned to bed with out any confusing conversation until about 5AM. — some of this is fuzzy to me — She went into the bathroom for a bit and seemed to be having a conversation with someone. (Not unusual – she talks to the spiders before executing them.) She came back out and told me there was a woman in a pink bathrobe that needed to use the bathroom first. I got up and went into the bathroom and removed her pink bathrobe from the door where it was hanging into the closet and closed the door to the closet. I returned to the bathroom and said – she is done now. It is all yours.
She used the toilet, brushed her teeth and returned to bed. I asked about the teeth brushing and she said her mouth did not taste very good. Now her breath was minty fresh. I told her so and she replied with – I love you.
About two hours later at 7AM the incredibly loud and annoying alarm clock brightened itself and loudly pronounced – Time For Medicine! I got up to fetch her morning meds. She got up and went to the bathroom after I set her medicine on the bathroom counter and helped her out of bed which is another normal routine these days.
Afterward she did not come back to bed. Often we lay in bed until she starts to gently snore and I get up quietly as possible and let her nap for a bit or she gets up after about thirty minutes to return to the bathroom. This time she stayed up. I asked – are you coming back to bed? She replied – no, I think I will put some clothes on. I did not probe any further but should have done so.
I got up and fetched the paper, made coffee and settled into the chair I cannot decide about keeping. I turned on the TV to catch up with the boring political news of the day. This is election day. The TV news is like the pre-game show from hell. … it is a nice day outside but the lines are long at the polling places… reports the guy standing outside a poll in New York City down the street from a boarded up Macy’s. Cheryl came out of the bedroom dressed up to go to church or some other gathering requiring an upgraded look.
Do you know who is picking me up?, she asked. I replied – no one yet. You should have some cereal for breakfast. (I was hoping that she would wake up.) She ate a bowl of cereal.
Afterward she went back to the bathroom, I thought, for a second time. As she came back out she said again, I don’t know when they are picking me up. I replied that no one was picking her up to go anywhere. This, of course, did not register as she was convinced that someone was picking her up to go somewhere. When I asked for that detail – where she was going – she replied, I don’t know but they will when they pick me up. She remained agitated and got her keys and went out into the front hall. (I thought she was checking for mail at 8AM.)
She returned and said, there’s no one out there. Do you know when they are coming? I coaxed her over to her chair (The Chair) and got her to sit down. I moved the rocker over so I could sit and look straight at her. And then I explained again that she was probably dreaming when she heard someone tell her that she would get picked up soon to go (wherever). I repeated this message and the one that we where going to her exercise class at noon today and, oh by the way, this is pizza Tuesday. Some of that sunk in through the fog of confusion because she asked again. I’m not going anywhere? No, not yet I replied. To your fitness class around noon, I continued. I look pretty good don’t I, she said. Yes you do. You look very nice, I replied.
I brought her some tea. We watched some more of the pre-game election news madness. She remarked that her watch agreed with the clock on the mantle but the news person had reported a different time. I told her that we were watching a recorded program – a benefit of cable – and we were watching it on a delay of about forty minutes. Oh, she replied and I could tell she understood. She was slowly becoming present.
At 9:30 AM she announced she was going to put on jeans and rest for a bit. I took her the ten o’clock meds at ten. She went to the bathroom and returned to bed and slept for about thirty minutes.
… 11:09 AM — she is back! But tired. She ate some yogurt and drank a little 7-Up.
Changing time zones is one of the more moronic ideas of the twentieth century carried into the twenty-first. China has only one time zone. Think about it and look on a map.
Cyptoquips and Word Jumbles and Sudoku
Her favorite games in the newspaper are these. Even though she may have episodes of confusion, she still works these. They require both logical and expanded thinking – references to puns, etc.
It came! AND the power package worked. There is nothing more to say. The joy on her face when she sat in it for the first time says it all.
Happy chair owner
Thank the lord and the heavens above. The Chair has arrived. It has been pronounced good and comfortable.
During this process I watched Cheryl get into and out of a sitting position. In her PCF class they do this as an exercise. A parkie seems to need two things to help with this. The chair needs to be steady and sturdy. No rockers, swingers or swivelers allowed here. We had a plain wooden rocker which is also less than satisfactory for getting up and out of. This chair is taller and solid. I tilts and reclines but has no other movment.
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.
It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.
In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.
Wildlife abounds
Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.
And more Halloween decorations.
Bush Jack-o-lantern
Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.
The path and stats
Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.
This is not my writing but Edie captured my thoughts with this post on Facebook. She and her husband are in about the same place as Cheryl and I with Parkinson’s Disease.
“Accepting what is… Choices and Avoiding The Sting of Defeat…”
There isn’t a day that I don’t Experience either a “slap myself on the forehead” moment, err on the side of caution, spout off an opinion or best of all, make my fella laugh or smile.
Some days are just rough. They’re tough!
Others? Well…there are good times; a smile across the room, a look of total understanding and the knowledge of who we are currently (and who we once were together. We’re still one.
This is a tough week for me personally. Our 45th anniversary is Saturday, Oct.24th. Tommy has been clear headed lately with some delusions.
A while back he mentioned several times that he wanted things to be “like they used to be” with our family. Life evolves and nothing remains the same.
As we all know life is not static. We’re a close family, but the grands have grown up, moved away and their parents are busy too. We used to have UFC Fight Nights, BIG holiday gatherings etc., and even no reason to get together functions. We gathered often and now? Not as much. Parkinson’s causes loneliness.
PD has changed all of us in various ways. We’re each caught in the midst of love, losses and our own feelings and responsibilities in life aside from Parkinson’s and Dementia. It’s inevitable. It happens.
We’re all worse for the wear because it’s a ruthless disease. But making, (hopefully the right) choices, accepting the realities of PD and Dementia, and preparing proactively for change has helped me to avoid the sting I mentioned at the beginning of this post.
Our CNAs have given me the “breathers” that I have long needed to separate myself from too much of anything that could bog me down when I’ve been up to my ears In either a struggle with Tommy, a medical issue, the VA or my own emotions. As caregivers we have lists of to do’s a mile long that threaten to swamp us.
While I’ve been planning our family gathering for our immediate family members, I’ve pulled out photos of us throughout the years, and of course…I cried.
I cried because I love Tommy passionately. I miss him, but I accept him as he is too. I do love him even more today than yesterday. Some days we get on each other’s last nerve too!!!
I cried because as much as I have tried to keep PD and Dementia out of our lives, it has, like a bee being threatened, taken a bite out of us and stings like crazy!
When I finally came to terms with accepting the transition from normal to cognitive issues and delusions, I had another epiphany. I came across a photo of one of the Santorini stones I paint. Painted in the body of the bee are the words, “Let It Bee.” Lord knows, I’m trying!
Moving forward. My menu for Saturday consist of Tommy’s favorites and the carrot cake is my favorite. The wine, Moscato-Asti is our favorite.
I pre ordered (from local businesses) everything so I wouldn’t have to prep or cook. I’ll decorate the cake with a topper that says “We Still Do” and edible FALL leaves. I’m excited and a little off kilter too.
Having the family near will be centering for us both.
The menu is planned and is “enough”. It will be truly complete when our group comes together with gratitude around the Kynard House table.
I wish you all could join us! I’ll post pics later.
Edie and Tommy
We too celebrated a milestone anniversary this year. We have been married 50 years. Sometimes I am disappointed that our retirement activity is centered around Parkinson’s Disease and other days I have come to understand that it may be the reason for being.
Our children organized a wonderful celebration. For that I am very thankful.
50 year cake
Anna also put together this collection of snippets of various sources.
We were young and skinny then.
… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.
Someone posted this quote from Sir Hopkins on Facebook and it passed through my news feed today. There is a Beatles song — Eleanor Rigby — that popped into my head. … ?? …
I have lots of things to ponder. I told Alexa to play the Beatles. Music from a time when Cheryl and I were young. Their music is soothing today. Alexa selected “Let it be” for the first one to play.
Black Bird … calling in the night.
This past week or so we have added two new drug therapies to Cheryl’s meds. They are working and they are not working. In a previous post, I described quetiapine for sleep. It seems to help. Melatonin helps with falling asleep. Seraquel seems to help with remaining so. Although we have had some odd episodes in the bathroom at night, it seems that she is actually asleep during these. At least, she has no memory of these in the morning.
Good Day, Sunshine!
Morning conversation often starts with her inquiring how I slept. We talk a bit about anyone that we may know or a family name that shows in the obits. And the past few mornings she has gotten up before me and had her bowl of cereal for breakfast. Sometimes she asks about overnight. Sometimes I tell her gently in my effort to determine if she has memories of anything overnight. I think the quetiapine is working. She will get up for bathroom trips but she comes back to bed. I know. I get up and go to the other bathroom. I think we are on the same schedule. (smiley face emoji here)
Yellow Submarine — similar shape to Ondansetron
Ondansetron was prescribed for Cheryl’s repeated feeling of nausea after she takes her medicine. She has been taking it for a long time and apparently her stomach has become intolerant of the meds. Zofran was originally developed for those dealing with chemotherapy. It seems to be working well. Although she still lays down in the evening after taking meds at seven, she does not complain of nausea, she complains of fatigue. And that only for a short(er) period of time.
As a caregiver, I often find myself focused on observing Cheryl’s behavior and asking her questions about how she is feeling in that very moment. From her point of view, I am probably exhausting. From my point of view, I cannot help it. I love her so much and it tears at my heart to see how this crazy despicable disease has changed her life, mind, cognition and even her personality. Nevertheless I have to keep reminding myself to take time for myself whether that is exercise – walking or riding – or reading or journaling (now). The quote from Anthony Hopkins struck a cord with me. Another way to say it is, “Stop and smell the roses.” One cannot put too much emphasis on taking time for oneself. Balance between giving care and taking care is a delicate thing to achieve.
Alexa just played “Help” by the Beatles
Ask for help before Parkinson’s sucks all the air out of the room and the day is lost. … Oh bla dee oh bla dah … life goes on! [and Eleanor Rigby is playing again]
Adjunct_Wizard 