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.
Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.
Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.
I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.
Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.
Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.
These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.
Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.
I read my book for awhile longer and we went to bed at 11:15 or so.
Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.
This novel by Joy Fielding is a fictional story with Parkinson’s disease as part of the story line. I tripped over this novel in the library the other day and brought it home. It was not until I began reading it that I picked up the Parkinson’s piece of the story line.
It is also a discussion of alternative truths, lies and deceit.
It is about thoroughly checking references when hiring help in your home.
Dysfunctional families always make a good story. Most times they are the story. There is plenty of that in this novel.
Pleasing our parents is something that we always try to do. Even when the parent is gone many of us still try. Even if the parent is old and cantankerous.
Bad parenting, good parenting, mutual respect and aid is all part of the complicated state of marriage.
Kids being kids add comic relief.
Writer’s ego and husband philanderers creep in and out of the story line.
With an amusing and unexpected plot twist near the end, it changed how I thought about the characters.
And a satisfying hallmark style ending always makes for a good completion chapter.
Read books. The day goes faster. Especially days that only have decaf.
Last evening most of Cheryl’s sisters and all of her brothers came to our house for a sibs dinner. Ostensibly a celebration of the youngest’s birthday. Ken goes to Florida on his birthday week. He looked tan. I made spaghetti and meatballs. Cheryl likes that. I made paine ordinaire (simple bread) because I like that. Tari brought salad. We had three desserts. We sang happy birthday.
Later I found Cheryl in the back closet wondering where she was. She seemed in wonder that all her clothes had somehow been moved to the back closet by our bedroom. She selected her blue zip-up jacket because she was cold. I was hot. Birthday boy was wearing shorts. The thermometer read 74.
She was very excited last night. She slept poorly overnight. So did I so today I am reading.
I hate Mondays. Mom told me this late in her life. I asked her why? I pointed out that she had not worked for decades. I don’t like Monday was her response.
Parkies can be grumpy on Monday too. Cheryl is not typically. I guess I am a bit because I did not sleep as well as I wanted. My bladder got me up at 4am and itchy legs kept me up for awhile.
I finished the wordle and went back to bed about 5am. The sun was up when I awoke again at 8. Cheryl was awake also so I made coffee and went retrieve the garbage can and the newspapers.
Except for the fact that I am retired and Cheryl has Parkinson’s disease and does not move well. A regular day. Ho Hum
A Hospice center is a quiet, peaceful and sad place.
The old meaning of a place of rest for travelers is an appropriate one. It is a place of rest between here and the after.
Cheryl and I have been visiting Fr. Gerry Witzemann. He is dying. Gerry married us years ago or as Cheryl likes to say, officiated at our wedding. Her comment is more correct of course. Cheryl’s cousin started out as a Franciscan priest. When his mother became ill and elderly her wanted to do more for her. His order wanted him to go to the southwest to minister. He left the Franciscans to remain in the area and help his mother as best he could.
This is our fourth visit. Gerry is not ready. On our first visit he indicated that he was ready. Are any of us ready for afterward? Sitting with someone that you know will not recover turns one to introspection.
Soon and very soon…
Today his niece Sherri is here. Cheryl can talk to her cousin about things that she knows little about. That part of her family lived close by when she was a child. But as people grow older they spread out. Sherri’s mother Verna, Gerry’s sister passed away a couple weeks ago. Sherri took care of her mother for the last three years of her life, at home, with dementia. What a grace filled presence. She once got up to talk to her uncle, “It’s okay Uncle Gerry. Mom is waiting for you. So is grandma and grandpa.”
Sheri was in the army. She was a nurse and a nursing supervisor. She is a very pleasant conversationalist. Her husband passed away in 1993. They have no children. As a reservist she was called up and spent a year in Iraq in charge of the nursing staff in the hospital set up by the army. Gerry was the Witzemann family archivist. It was his hobby for years. He has lots of notes about the family history. Sherri now has his information.
We exchanged phone numbers.
Gerry won’t be with us much longer and that is sad. Many folks who come to visit him and he has many, are uncomfortable. That is understandable – and sad. Somehow it was neither sad nor uncomfortable with Sherri there. We were just there with Gerry.
Soon Gerry will be gone from us.That is why he is with hospice.
(Fr. Gerry Witzemann passed out of this existence at 5:30 am February 5, 2023. A Sunday the Lord’s day. How appropriate. May he rest in peace forever.)
Sheri called yesterday afternoon and talked to Cheryl some time. Cheryl was working on “organizing her office”. It was a slow day for her. It was the anniversary of her father’s birth. He has been gone for some time now but if he was alive he would have been 100.
Sheri had called a couple days ago in response to getting a Christmas card from us. I found the message she left on our phone when I listened to the message from my brother-in-law. He had called to wish us a Merry Christmas and I did not pick up right away because we were eating. I discovered Sheri’s message from a couple days prior. Sheri is a dear friend. Her sister has Parkinson in one its many flavors also.
Sheri,
Thank you so much for calling Cheryl yesterday. She was having a slow day.
Yesterday was her Dad's birthday. If he was still alive he would have turned 100. Her brothers and us gathered at her Dad's favorite bar in St. Bernard last night. She had a good time I think but did not always know what was going on. 😔
When you hung up the phone she asked me who she was talking to. She sometimes forgets who called and is too embarrassed to ask. I often stay near her when she is talking to someone and ask something using the person's name. I was busy with other chores. Memory loss, aphasia and confusion is a constant struggle for her.
You called while she was sorting through a bunch of old Christmas cards and some new cards on her desk. She reads and rereads them and has long conversations with each person that she tells me about later. Greeting cards are important to her. She cherishes all of them and rarely throws them away. 😁
Thanks for calling. I could hear that for awhile she was talking to a friend on the phone and working on her stuff. You lifted her spirit. Earlier in the day she told me she was sad that all our parents are gone now which is a pretty lucid thought for her. She talks about and to her Mom and deceased sister Janice a lot.
You have no idea how much you helped yesterday.
Thanks again,
I thanked Sheri for talking to Cheryl. Cheryl becomes very animated when someone calls her on the phone. When we come back from anywhere her first thought is to go into her office and check for messages on the landline. real people rarely call our landline. It is not actually a landline as voice over IP became popular perhaps 20 or more years ago. Cincinnati Bell changed its name to Fioptics (again) to highlight its business. Many years ago it was Broadwing. (I don’t know either.) I have digressed.
This article talks about the importance of staying in touch with older adults. It target was old people during the height of the pandemic pandemonium but it is a thing to think about with any older adult with an isolating disease like Parkinson’s or Alzheimer’s. Older adults do not always realize that they are isolated. Children and family could call and check up if they wanted to do that.
Now if I could get her brothers or sisters to call arbitrarily out of the blue once in a while, much would be better.
I talked to Joyce yesterday and wished her a Happy Birthday. She and I are last of our family still awake in the natural world. She sent me these pictures of her and I sent her a picture of me. Her friends went out to celebrate her birthday and she got to meet Santa.
I sent her a text message early in the morning and wished her a happy birthday. We are the middle two in our family. Our younger sister and older brother are both gone now. It is just us. She called me back when she was walking her Mexican rescue dog. We talked about everything and nothing while she walked her dog. I commented that the crows were far away this morning and she told me it was cold in Portland so her ear phones were under her hat. She sent me a picture.
I think it is important to have family around. When our brother passed out of this life a couple years ago in the beginning of the whole covid pandemonium from something else not covid, it left another hole in our family. When our younger sister passed away from cancer in 2008 she took part of me with her. I had been her stem cell donor. Dad died the year before our sister. Mom died a few years later. Now Joyce and I are left.
We both have the same Carhartt hat. How warm is that?
Communicative processes used to discover what is needed or desired by others in business or other walks of life work well with loved ones experiencing dementia and related memory issues. And while the single most important concept to remember is that short term memory loss affects every conversation, short term memory loss greatly affects attention span. Keep it short, keep it kind and keep it simple.
Here are some tips from an article in Psychology Today’ website:
Consider the timing and mood of your recipient.
Check your own emotional level.
Be responsible for delivering clear communication.
Consider using I-messages to avoid blaming or putting others on the defensive.
Be a good listener (attentive) when receiving a communication.
And here are more from the Social Care Institute for Excellence website in UK:
Their focus is providing professional care to Alzheimer’s patients and those dealing with other sources of dementia. Their techniques are good to understand for non-professional care givers. I use this list to think about and discern how better to help Cheryl.
Minimize background noise
Relax
Think about how the person may be feeling
Always introduce yourself
Greetings or ‘verbal handshake’
Physical approach
Be aware of emotions and touch
Identify the emotional state of the response
Don’t be shy from tears or laughter
Say what you think the other feels
Keep it simple
Use the person’s name often
Use visual aids and prompts
Confirm understanding
Minimize background noise – I have noticed that Cheryl is easily distracted by almost anything that passes into her line of sight. I have noticed that Cheryl is unable to do two things simultaneously such as talk to someone and keep walking. I have noticed that Cheryl is unable to follow a conversation if two people talk animatedly about some topic in rapid succession or over the top of each other. I have noticed that Cheryl is unable to interpret words spoken with a different lilt or accent other than Midwest Cincinnati. I have noticed that she no longer watches any of her favorite shows on TV. With all of this considered if I want to gain her full attention, I remove all distractions.
Relax – I struggle with relaxing and letting go for a bit if she is out of my sight. As her disease progresses and I see her falter with balance issues, stumbling gait and postural difficulties, my anxiety about her future (and mine) often comes through in my voice. I may say things or express opinions that can easily interpreted as rude, pedantic and egotistical. For those times I apologize to her and you.
Think about how the person may be feeling – I do not do this enough. It is easy from the outside to forget that the person is not the disease. Parkinson seems to make this harder because in one moment she will be “fine” and in the next she will be “off” – not necessarily physically off, mentally off and physically fine. I find this confusing and my default is not “she’s confused – help her”. My default tends toward preachy pedantic lecture.
Always introduce yourself – Most of the time I do not need to do this. I can understand that it may be important for a professional to do this. Occasionally Cheryl is unsure of who I am. Mostly this occurs in the evening if she experiencing a bit of Sundowning. (Sometimes I am “that guy who brings the pills”) Sometimes I tell who I am if I think she will accept it. Sometimes I leave it alone. The important thing is to not be insistent that she is wrong about who I am.
Physical approach – I have noticed that Cheryl startles much more easily than she did before Parkinson (bP). This comes in many forms visually and audibly but the important thing is to not surprise her. Surprises often lead to backing up and falling down which is her usual method of falling. She will move away suddenly from the perceived surprise.
Be aware of emotions and touch; identify the emotional state of the response; do not be shy of tears or laughter – I think these fit together as emotional response to conversation. Sometimes to me it is surprising that she will have tears about telling you that Laurencia is going to Ohio State University. I can understand that talking about her deceased mother will cause tears. Nevertheless it is important to understand that a person suffering with Parkinson may have her emotions very close to the surface. Try to remain calm but it is okay to “have a moment” and be with her. One memory often elicits another more tender memory and things tumble downhill quickly.
Keep it simple; use the person’s name often or the other person’s name if telling a story; use visual aids and prompts – pictures of children; confirm understanding – I have noticed that Cheryl may lose the thread of any story or conversation easily. She will not indicate in any way that she has lost track of what you are telling her. You may detect that she has lost it by some response that she makes. Simply reiterate some part of the story to help her recall. Do not get bogged down in correcting her mistaken thinking. Do not raise your voice to emphasize the correct story, time of day, holidays coming up, time of the year or who is coming to dinner. She will not remember but she will think that you are frustrated, angry or disappointed and respond with – I’m sorry.
Finishing– Just as you prepared to start a visit and conversation, so you must think about how you will bring it to a close. I do this many times a day. (For visits) When you are leaving the our home, make sure you say goodbye. Cheryl may think that you are still here, perhaps in another room. This may cause confusion or anxiety later. Ensure you have her attention, smile, and let her know you enjoyed your time together and the conversation. Shaking her hand or hugging her is a common gesture which gives her a strong clue you are leaving. Leave her reassured and let her know you look forward to talking again.
I spend a lot of time reading articles and searching for useful ideas to help Cheryl. This post is a sort of summary of two of those and how I think I can better communicate with her.
(This picture of a fossil track called a mortichnia heads an article in Omni Magazine.)
But impressions are better. They are more general. I was thinking about this early this morning while writing in my little log where I make notes about Cheryl’s day to day.
I note sleep patterns. I write when she goes toward and eventually gets into bed. I know this intimate detail because I have been helping her get her pajamas on and positioned in bed. Most nights she stays. Sometimes she has gotten back up and we will sit for a bit while I get finished with whatever I am doing before going to bed. Many times that is writing this little blog or my “Hitchhiker’s Guide” to care giving. (I am collecting stories and thoughts in a book.)
We have been speaking untruthfully to therapists when they ask, Do you need help with getting dressed? I usually respond with sometimes but mostly not. Cheryl mentions her numb feeling fingers which get in the way of snaps and buttons. None of these are on her pajamas but late at night it is confusing to her.
I note conversation in the evening which lately is confusing. I have thought it might be interesting to capture it and transcribe it. It suffices to say that it is very odd and non-linear.
It is better to stay in the moment. It is better to reflect on those moments and write my impressions later.
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
A couple people help me occasionally with Cheryl when I need to do other things. Today I had planned to go visit our lab area at a nearby community college but that changed early this morning. I sent a text to Linda and told that the situation changed but she was still welcome to come visit for a bit. She came and we talked about her sister who is struggling with cancer and other things going on in her life.
In a different discussion Linda revealed that Frank (My cousin, her husband who passed out of this world a decade and a half or so ago.) kept a book by E. E. Cummings on his desk in addition to books by Robert Fulghum (It was on fire when I laid down on it, and others.). I vaguely recalled that Cummings was a poet but I was not sure so I looked him up on the world wide wait. I was proven correct and I went to a poetry website that I occasionally visit. Searching for some of his work this was the first poem displayed. (I think Frank was talking to me.)
Thanks Linda and Frank. I have found another poet who speaks to me. And thank you Poetry Foundation for being there when I need words to guide my heart.
When she is running on parkie time and I manage to get her to her exercise class on time without arguments, mostly none, I get a feeling of pride of accomplishment. Seek accomplishment in the small things of life and bigger things will follow. Or I think that they will.
There are lots of life plans and platitudes similar in sentiment. Keep track of the pennies and the dollars will take care of themselves- is one from the business world. Manage the little things and big things will come your way. Yadda Yadda Yadda.
She seems to be enjoying class. It consists of a group of boxing like motions while seated. A similar class uses dancing moves. The constant motions raises the heart rate.
Friday is always a bit tricky since the class that she likes is at 11 am. All other classes are at 12 pm and later. Generally her best time of day is 10 am until about 7 pm.
Adjunct_Wizard 