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.
It used to bug me a little bit if Cheryl leaked out over night. But one day I said to myself what is the big deal. It’s just laundry.
It is now another mantra for me. Much like Carpe Diem (seize the day or seize the moment) after repeatedly saying mottoes like this out loud or not, it changes your mind about whatever is bugging you. Out loud is better.
Psychiatrists and psychologists call this cognitive talk therapy. It works for many situations. The important part is to keep doing it even if you do not think it is working for you. Eventually you will convince yourself.
After I wrote the initial thoughts I had on this topic of changing your attitude to be positive, I tripped over this article by Rachel Feintzeig in the Monday Jan 23 edition of the WSJ. It intrigued me. Naturally there is an app for that. I used to think that it was better to be a pessimist and be surprised by events than to be an optimist and be disappointed by events. This is summed up by the dismissive and sometimes arrogant, we’ll see comment that is spoken by pessimistic personalities.
An added bonus to reading Ms. Feintzeig’s article is that I learned a new albeit made up word: pronoid. A friend of her’s made it up and explained it to be the opposite of paranoid. He believed the world to be conspiring in his favor.
Pronoid – a situation where your surrounding friends and environment join forces to make your existence better than at first perceived. (I like it.)
Overnight urinary incontinence can be really inconsistent and inconvenient but in the end a load of laundry solves it. Cheryl lately is losing interest in her exercise classes that she used to like, I try to bump her into some other physical activity. Take a walk, go shopping which is also a walk, or something. Outside is best but sometimes the weather does not cooperate. Carpe the moment. I try to read her mood and find something that is not in our condo.
It does not always work but activity is best. Sedentary is less than best.
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.
If you are going to try to get your PwP to speed up to go somewhere make sure you have your act together first.
What ever schedule that you have in mind is busted, so, move on.
Some people sleep in occasionally. It is not apathy, just the ordinary need for luxurious life.
“Church” is merely another name for going somewhere. Just repeat the answer to: Where?
Do not panic when she asks where we are sleeping or asks if we are going home tomorrow. Tomorrow she will not remember.
Read her email once a day.
Casually look in her disorganized office once in awhile to get a feel for where things could be when “I can’t find my…” comes up.
This is a continuing list and when I stop to think about it and all the things I have had to learn and do it makes me smile. Frustration creeps in sometimes but I think that most of the time I can push it away. The times that I cannot are about what this disease has taken from her.
In Cheryl’s case, decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?
Parkinson is a big enough trial when it is only a mobility issue. When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.
Today is the date of the Sunflower Rev it up for Parkinson’s symposium. It is an information and exercise presentation by UC Health in Cincinnati. And we are getting a late start.
Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.
The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.
Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.
In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects. The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.
A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out). Social gatherings are important . One can never give up.
There are things you can do that will make things easier like, no button down shirts.
There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.
But did she lie on purpose or did she merely confuse real actions with thinking about them? Dementia and memory issues interfere with answering simple questions.
The physical therapist asked her about doing the same exercises at home when she was not seeing the therapist. Oh yes she replied, ” Every day.” This was probably an hour after her meds and she moves pretty well. Talking to her is much like a regular conversation. The mistruth just rolled off her tongue. In her head, she had done the exercises.
For a statement to be a lie it must have the added ingredient of intent. One must intend to mislead. Cheryl has no such intent. Her intent was to please. Eventually with my urging she will practice some of the exercises.
Switching from a siting position to a standing position is a struggle for her. At physical therapy Morgan and Stephanie practice this with her. She struggles to remember the sequence of small moves. We will keep practicing at home. I wonder if she will eventually will forget how to feed herself. I wonder if her body will no longer sense hunger.
Cheryl has lots of stories. Many of these stories are embellished memories. We all have some of these. Many of these stories are explanations of motive. Many of these stories are to please the listener. None of the stories are intentional lies.
Scooch forward in the chair, Heels behind your knees, Lean forward from your waist (nose over toes), push off the chair with your hands, straighten your legs — grab the walker on the way up. Practice.
In my never ending battle to keep us safe and healthy and because Cheryl kept pressing me to do it, I scheduled us for a second booster shoot for the covid virus yesterday.
I got some chicken out of the freezer for dinner and helped her get moving in the morning. The morning was busy for me because it was my last care partner class. From that I have a mountain of valuable information about various service providers for the future. We are not there yet but in a few years we will be.
Linda appeared a little early and we chatted for a bit and then I was off to class. When I returned Cheryl had gotten cleaned up and dressed herself. I think the big new bed is giving us better rest overnight.
Our appointments at Walgreens were scheduled for 4 PM and 4:10 PM. We got to the store with plenty of time to fill out forms and prove who we are. Except for me. I had forgotten my wallet and ID. (Alas and drat!) As Cheryl came down the aisle pushing her U-Step walker I explained that I had forgotten my wallet. I asked her to sit down near the pharmacy desk and I would return in a few minutes. This Walgreens is about 5 minutes from our house. I zipped home and back to the store. When I returned she was sitting in the chair filling out a form on the clip board that the pharmacy assistant had given to her. Ordinarily this small task would have been confusing and incomprehensible to her. She had even found her ID and previous covid info in the purse of many pockets. I am beginning to understand that much of her confusion and mental fog of late may merely be poor sleeping patterns.
It is hard to overemphasize how important good sleep and rest is. The big new bed seems to help. One less Carbdopa/Levadopa CR seems to be beneficial also. She seems brighter during the day and not so inclined to pund around in her office at night. She is sitting in her recliner with me to watch a show or read a magazine article more during the past couple weeks.
She had plenty to eat at dinner. She even complained that I had not made gravy to go with the chicken. It was a normal (mostly) conversation during dinner between two people who had been married for 53 years. (Smiley face here) Later in the evening she felt a little chilled. I went to recover her sweater from the backseat of the car where it had been warming in the 90 degree heat for several days. We sat for a bit longer and then she got ready for bed. She returned and we watched the PBS show NOVA for an hour and we went to bed at 11 PM.
We were up again at 1 AM until about 3 AM. I am going to blame the booster shot. I was having difficulty also.
Today we slept until after 9 am. She seems rested. I know I am. It is off to the doctor today for our semi-annual wellness check. I feel well. She seems well.
Last night at support group which is a joint support group, by that I mean some care partners, some Parkinson patients, the conversation was centered on care partners and the difficulty of that activity.
We often start by introductions. We had two new people, Teresa and her husband, Dale who has PD. Dale was recently (a couple years) diagnosed and they as a couple have been dealing with symptoms and life altering changes. Recently they downsized and moved closer in to the city and source of their medical care. They happily discovered Parkinson Community Fitness (PCF) was just a few blocks from their downsized house. Teresa has had psychological therapy to help her deal with her husband’s disease. When she revealed this fact she exchanged info with Jackie who had been pondering the same thing.
It is wonderful to see people helping each other through a difficult time. Life is a journey. Sometimes it is helpful to ask for directions. It is why this group exists. Cheryl originally started it. John and I took it over as her dementia worsened and she could no longer keep up with its organization.
Five questions — all open ended.
These questions are stolen from the Davis Phinney foundation and its theme of every victory counts.
What’s the best way to approach difficult coversations with my person with Parkinson’s or care partner? Take a deep breath and get rid of your anger. Remember your partner is not doing or not doing something to annoy you on purpose. Parkinson’s disease interlaced with dementia is complicated.
I don’t want to nag, so how do I encourage my person with Parkinson’s without harping or nagging? This of course is a source of friction in any marriage that can be made worse as one partner cares for another with a chronic disease. Most care partners were okay with nagging if it proved useful. I know I am. it is the guilt that shows up later that bothers me most.
How can I tell if I’m expecting too much/too little from my person with Parkinson’s? Care partners often maintain expectations of their previous life before PD entered their partner’s life. We can see the slow movement issues. We do not always understand that mental processes slow also. Decision making can be challenging. Menus in restaurants can be extremely challenging.
How can a Parkinson’s care partner live well today? Find time to do things that you as a care partner want to do. Find and do things that are yours and yours only that you can do away from PD and caring for your partner.
How can a Parkinson’s care partner be loving and supportive but also honest about how they are feeling? Most couples are open with each other. It is hard to stay married for long without talking.
Melanie spoke about feelings of grief as she and her husband began to recognize how life changing this disease can be. For Cheryl and I, we have noticed that it can be a very real sense of loss. It is hard to be upbeat when life beats you down. It is for us a one day at a time thing.
Hence my theme “Carpe Diem” which I say to myself over and over lately merely reminds me to look for the good things now. Take advantage of when she is feeling good. Forget about lamenting what could have been. develop a network of helpers to be with Cheryl occasionally so that I can be with myself.
I have not added Edie Kynard’s prayer ( modified) for a while but looking over my notes from last night and writing this piece this morning caused me to find it back.
Cheryl’s Parkinson’s disease interlaced with dementia has taken a turn to the negative over the past three months. It is tough but necessary for us to explore extra help and other options to our living situation.
I feel a sense of sadness. It is not exactly that I have failed because I recognize in my heart that her disease has a progression. I suppose it is a progression that I had not anticipated.
I also feel a sense of relief, an acceptance of the fact that I cannot do it all alone anymore. I recognize that we have to do something different. That first recognition came when I decided to buy a new bed and change our sleeping arrangements. At least, I thought a split king would keep us from awakening each other at night.
We drifted off to bed about 10 PM after watching a couple of her favorite shows on television and visiting with her sister for a couple hours. We probably eventually fell asleep about 10:30. Overnight I got up to go to the toilet twice and the second time around 3 AM she got up with me and seemed as though she wanted to stay up. I had prepared to sleep on the sofa bed we had and then she came out looking for me. We had our often discussion about church and I suggested we lay down for two more hours and then get up. She got up at quarter til noon.
I got up around 8:30. It was bliss.
I took the time to call the assisted living facility nearby that had housed both of our mothers at the end of their life. I still refuse to believe that we are here yet BUT it does not hurt to find out about various options to move forward from here.
I also set up a couple doctor appointments. She is having problems hearing occasionally. And I wonder about a UTI.
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.)
In a past episode of “Ghosts” the young woman protagonist uses the term “maybe” instead of a direct “no.” Cheryl says, “I’ll think about it.” Reading the care giver’s guide to the galaxy book which is a part of the class I am attending to learn some things the communications chapter discusses saying “no.” It talks about the implications of negativity which go along with saying no. I have noticed that most times people cannot say no with out offering some explanation to lessen the blow of the no.
It is much harder with a dementia patient. The no may be a greater blow than one can imagine. But sometimes it is very important to the care partner to express “NO” and then explain the the care receiver why no is important this time and then discuss alternatives that may sound like “we’ll see.”
Adjunct_Wizard 