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.
Last evening as we drove to our granddaughter’s high school graduation it became apparent to me that although Cheryl knew who I was she did not really know who I am. She started talking about events in the past that we had done or children and grandchildren, sometimes mixing those together. Her discussion might start out as Paul and I did this or Paul and I did that or Paul told me etc. It makes one wonder about the complexity of the human mind.
In one of these conversations, an incredibly lucid one, she said to me that she thought her Parkinson disease was getting worse. (AHA) She went on to say that her memory was very bad at times. I just took a deep breath and let her continue. She explained that she was having a harder and harder time remembering names and relationships (she said “who they belong to”) and that thought bothered her. Throughout the rest of the evening at the graduation ceremony, pictures in the courtyard outside the high school and on the way home, this failure to remember names and relationships was forefront on her mind.
This information is very important to Cheryl. Embarrassment or shyness keeps her from merely asking, “who are you?” I told her that she can always ask me who the other people are and I would tell if I knew. I am not shy. I merely say, I’m sorry I’ve lost your name in my head.
Most times these drive along conversations fall into the category of prattle and I can respond with, ugh-huh or yes that is probably true or I don’t know about that but, yesterday evening it was more serious than that. Last night it affected her sleep as she began to worry about how everyone fits together. She could not find those relationships in her head to her satisfaction. She spent the three hours from eleven PM to two AM speaking to herself in a low voice and fidgeting with her hands. Fidgeting often accompanies her discussions with herself as well as others.
There was a lot of hugging and reassurance that I would always help. She on the other hand is aware of her memories dissipating into the ether and it scares her.
Indeed, her disease is getting worse.
Living in the present is all that is left when one cannot plan ahead nor remember past experiences. Disappointment was rampant in our drive along yesterday. Regan’s graduation ceremony, however, was well orchestrated. She is on to the next thing. (Smartphones take really crappy long photos but here is some from the ceremony.)
Jan? Jan? (me – what?) Do the doctors know if this Cesarean is scheduled or not? (me- I don’t know. I’m sure they will do what’s necessary. Try to get some sleep.) Okay. Wake me when it’s done.
Early morning as well as late evening conversations can be odd sometimes. This one from last night as she was falling asleep stuck with me.
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.
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.
Frank, I know you are not with us any more and have not been for awhile but I suspect that like Google and Facebook you can watch us, so here is what I want to say to you.
Thank you ever so much for marrying Linda all those years ago when we were young. These days she is an immense help to me and a good friend. As you are aware, her simple act of kindness to Cheryl and me comes in the form of being with Cheryl while I go do something else. Lately that has been riding my bike around Lunken Airport.
When she first started doing this for us I had signed myself up for a care giving class which put great emphasis on making sure that you take care of yourself as a care partner. I asked if Linda could be with Cheryl during those class times and she agreed. I took the “take care of yourself” message to heart and make an extra effort to find help so that I can be on my own for a couple hours.
Since I am seeing Linda more these days, prior to this as you know we met for pizza Tuesday maybe four or five times a year, I think often about our conversations and ponderings in Aunt Dorothy’s kitchen. Do you remember some the questions we posed? How does one determine if sour cream is bad?, for example. I had not thought about it at the time but it was the same sort of thing that would puzzle my dad and I am guessing his brother, your dad. Sometimes small people would run through and we would wonder who they belonged to. Those are good memories. That entire older generation of our family is gone now. Aunt Bert passed away last year. But you know that. Have you talked to her yet? Does dementia go away when you get to heaven?
So, here is a couple questions for you. How are you doing in heaven these days? Is heaven a no smoking area? Is there a smoking section? Or did you give that up?
Did you know grapes are better when they are frozen? I learned that from Sarah’s Luke.
Ray and Shirley passed through town a few days ago. We gathered at Sarah’s house with as many folks as we could conjure up. Not all of your kids were there but some were. Betty and Herb came from Brooksville. Andy was not there but Kyle and Julie were. It was a great time. Ray took a picture:
Oftentimes my immediate reaction to unsolicited advice is to ignore it because I assume that the advisor has their heart in the right place. Pushy people can insist that I’m doing it wrong but it is possible to listen past this and hunt for the useful nuggets of information.
Today Jane apologized for jumping up to find Cheryl a different cup to put her soft drink into at the pizza store last Tuesday. It was both unsolicited and surprising. I ignored it and when she came back with a coffee mug I poured part of Cheryl’s drink into it. It was a good solution and Jane’s apology and later her admonishment when I said that it was unnecessary reminded me that I am not the only solver of problems. Jane’s background is special education with kids that have special needs and although Cheryl is not on of those, some of the same rules apply.
For quite some time now I have been merely moving Cheryl’s giant plastic glass of soft drink away from any gyrations that occur with her hands as she engages in conversation. It never occurred to me to merely request a smaller additional glass to put her coke in. Something that was easier to deal with. AHA (dammit I missed that one.)
So what can the Care Partner of The Year 2021 do with all of this wonderful knowledge? In an inadvertent fluke of fate and its fickle finger Patty send me an email with the information about a Caregiver’s Class put on by Catholic Charities of Southwestern Ohio. I am all for being as educated as I can about how to take care of Cheryl better by taking care of myself.
Being an engineer and amateur scientist I thirst for knowledge. That is corny but true. The problem with that statement overall is that there is no complete solution to Parkinson’s with dementia added. There is not even a partial solution. Cheryl’s sister hopes for a cure. I do not hold that same hope. That being said, the situation is not hopeless.
I bought a book called “Dementia Reimagined”. I was hoping for a cookbook style answer manual. It was not that at all. It is an incredibly tiring tome about public policy and where it fell into the dumper over the years. Engineers are always hoping for a cookbook for their situation. When this happens, do this. Alas there is no such manual for life situations as defeating as PD with dementia.
But back to the help-book, It seems as though many of the ideas I have discovered on my own or others have told me about I merely have been ignoring them. Early in the book it talks about developing goals and achieving them. These are not care-giving goals. These are goals that allow the care-giver some relief.
Initial focus is on setting a goal or several goals and development of a plan to achieve it or them. The goals discussed are relaxing activities for the care giver. So, it is something you want to do. It is also something that is reachable and realistic. Something you can accomplish in the near term.
What do you want to do?
How much of it do you want to do? (more specifics)
When do you want to do it? (timing helps to plan)
How often do you want to do it? (repetitive relaxing activity)
This same technique can be used to plan any sort of activity, of course, but the book’s focus is care partnering and care partner health. Additionally this portion of the text asks the maker of promises and planning to predict the probability of achieving your activity. There’s an implied deep need here. Something that you may really feel like you want to do but have little chance of achieving. A life lesson in the manner of understanding that not all wants are achievable. (How driven are you to get to your goals)
The next portion of the focuses effective communication and recognizing emotional and stressful situations. Two forms of communication discussed are assertive and aikido. A comparison of these styles of communication is Assertive:”stand tall” vs. Aikido:”standing with” This portion of the book takes me back to my educational psychology classes and discussions about defusing confrontational situations.
ASSERTIVE
setting limits
asking for help
advocating for another
making difficult decisions
dealing with difficult styles of communication
AIKIDO
defuse emotional situations
help others feel understood
reduce anger
balance emotions to allow dealing with others
As I go through the rest of the book I will report anything else of interest to me.
She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.
That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.
Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.
We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.
She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.
I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.
Adjunct_Wizard 