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.
Well Thanksgiving is tomorrow, Christmas is a couple days afterward and then Easter is the following week. Cheryl thinks that anyway, so, we are all decorated for Christmas (Soon to be Easter) Season.
Yesterday I made banana nut bread out of some soon to be brown bananas purchased specifically for that purpose. Here is the result.
Later today we will make the sugar cookie recipe that Cheryl remembers as a child and later on she made when our kiddos were small. As you can see the Mirro cookie press booklet has been though many cookie wars. (The cookie press itself has been replaced many times.) I am in the process of transcribing these recipes for posterity but I suppose if I look hard enough I could find them elsewhere on the internet of all knowledge. I am not very busy. One more thing is okay.
The cookie dough has been hanging out in the fridge overnight so it should be perfect today.
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.
I gave in yesterday as it slowly dawned on me that the tree decoration activity was becoming an overwhelming task for Cheryl. It was her idea and has been for a couple of weeks. “We have to get the Christmas tree up, Easter will be here next week” she told me one day. I had resisted but I thought – who cares? I got the boxed tree out of the garage and put it up. I got the tubs of decorations out and parked them on the dining room table for the next couple weeks. We maneuvered around them. Once in a while she would put up a ornament or two. Many of these are one the dining room ceiling fixture because it was near to the tub on the table.
I have to admit it makes me smile.
Yesterday I had little to do while I was waiting for the laundry to get finished, so, I put up the rest of the tree decorations on the tree. I put the empty tub back in the garage with a small sigh. And the last glass ornament on the ceiling fixture over the table. Our house says Christmas now.
Yesterday several of Cheryl’s friends came to visit. It started out as a low key thing. Our friend and neighbor, Jane, organized many of Cheryl’s friends and old card playing buddies to visit on a regular basis and allow me to escape for a bit. Cathy sent a text message to me a couple days ago. She was supposed to come last week but got too close to a child and was still recovering from whatever disease virus that kid was carrying. This week she is coming to visit. The text asked if I was okay with her coming. Sure said I.
A day or so later I got a text from Mary Jo. Was it okay if she came to visit. Sure said I. Cathy was coming that day also. Hmmm said she. I thought it was my day. Time to par-tay.
On the heels of those women, Maxine, Cheryl’s old boss and good friend called and said that she was coming. Maxine is older so she came with special requests. For a while there were two women with mobility issues in our house. Friends are great but they need to deal with their own issues themselves. That sounds a bit callous but I have one focus that consumes me.
Nevertheless all went well for a time and I snuck out to the barber for a long delayed haircut. I was starting to favor the gray haired Boris Johnson look.
Today more friends came. Nancy and Carren came over for a visit.
Most of these visits were in response to our friend and neighbor Jane’s idea of a network of friends to help with Cheryl and give me a bit of respite.
I may have to spend some time in discernment. Cheryl was very tired and confused into the evening after they left.
A new discussion popped into the conversation today, Cheryl is working her memory about where each ornament came from. There is a series of small flat wooden ornaments that she kept herself busy with when she was pregnant with our kids or they were very small around Christmas. They are painted flat pieces of plywood. She did these many years ago. At first they were always hung on the bottom of the tree so that little hands could touch and even remove them with no ill effect.
It is a memory lane thing. As the kids got older they would make ornaments for the tree. Some were made from wheat dough and cured in the oven and later varnished and painted. The last of these – a blue dog bone – is broken this year. (I may do my magic glue trick and resurrect it for display.) Some ornaments were purchased at a Christmas bazaar at the school our kiddos attended when they were growing up. Grand kids have made snow people with their names on them. Cheryl’s mother gave every one of her children a ornament from Macy’s commemorating some event each year when she was alive. All of the ornaments have a story that is remembered and spoken about as the tree is assembled ever so slowly.
The top row of pictures includes Sr. Laurencia’s bells and Grandma’s snowflakes. The oldest grand child, Laurencia, is named for Sr. Laurencia who had a very special relationship with Cheryl in her high school years and in our early married life. Grandma’s snowflakes was purchased by our daughter Anna and when Zachary came along I added a snowflake for him.
There are so many memories to share while putting the tree together.
The tree went up today. Perhaps a bit early but hey, according to Cheryl Easter is in a couple days. We have to get ready. Some ornaments are placed in a special circumstance like a lamp or the chandelier that in the picture below. The twelve days of Christmas garland was placed on the china cabinet. That is a new position this year. Much like the trip to the shoe store it is an overwhelming task.
The dementia and associated cognitive decline keeps her from maintaining any focus for more than a few minutes. It also adds a twist of spontaneous creativity. We have had this floor lamp for years. today she said, How can I hang these on the pull chains?
Some ornaments were hung on it with care. The beaded garland went over the door to my hideout. There are more to come sometime. Late night punding has commingled with hanging ornaments. Sometimes the ornaments are viewed and reviewed and replaced in their storage container. So far the tree has captured about seven ornaments.
Not bad for three hours of activity. It can be dumfungling to her. (Use a new word often and it becomes yours.)
(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.
It was a less than brilliant idea of mine. We are backing into full on Christmas shopping mode. Today as we left her exercise class Cheryl asked, What should we have for lunch? Usually she is asking what sorts of leftover foods are in residence in our refrigerator. While I am stalling to think about what is in the fridge I asked her if she wanted to go to lunch in our favorite diner. She said yes.
Our neighbor works at this little lunch place in our little town. Carrie was working this day and we chatted and caught up for a bit. We had lunch and Cheryl mentioned that she thought there was something she needed to shop for but could not remember what it was. I was my helpful self and reminded her that she wanted to get some new slippers. I had bought her some Minetonka moccasins a couple years ago online and she had worn them enough that they were getting beat up. I suggested that we could find a shoe store and look for slippers. (FOOLISH MAN) I found the nearest Shoe Carnival and after checking online discovered that they had a couple varieties of lady’s slippers to choose from. (Why do I make suggestions and eventually order for her in a restaurant and never transfer that information to other similar situations. Why?)
I am taking her to a shoe store. (foolish man) Their slippers are in the back near the clearance racks. Foolish men think that they are going to zip in, get some slippers that fit, and slip out. That is why they are referred to as foolish ignorant men. Part of the X that men do not get at birth lies on the 27th chromosome near the end – SHOPPINGFORSHOES – the shopping sequence genome. The combination of the leather, vinyl, foam and cardboard pheromones commingle to trigger this gene sequence into action. It is remarkable that even a dopamine deficiency can be overwhelmed by this gene to enable the lame to walk with confidence. All balance issues disappear. A study should be made about this phenomenon.
I realized that I had taken her to a place that was significantly worse than a restaurant menu. I gave in and helped. We rejected with sadness all four-inch heels (although there was a woman my daughter’s age there shopping nearby that looked good in them.) Also rejected were those with pointy toe boxes on them. Too much toe repair to fit in that configuration any longer. Cheryl has walking shoes, some slippers and a couple pairs of Easy Spirit black flats. She has no lighter beige/tan/sand colored shoes if she is looking for “something different”. She wanted to think about and make a list of candidates for later. I suggested I could take pictures of the boxes to save for later. She replied that’s a good idea. After an hour and a half we left with pictures, notes and slippers.
Some beer would be good. Perhaps a nice single malt.
Example sentences: “Leave me be, hen. I’m feeling dumfungled at the week I’ve had.”
My sentences: Dumfungle the competition and take over their area. | Dumfungling takes a lot of time but it is so restful afterward. | AND | My wife has Parkinson’s disease, so, she is dumfungled in the evening.
Oft times as a care partner I find little diversions to take me away from our daily existence. Reading, language, words, word usage and humor are mainstays of my diversions. This word-of-the-day from a site in the UK captured my interest today. Thank you Kath – whoever you may be.
In her blog, Cheryl Hughes, writes that many times it is better to “just let go”. She spent many years as care partner for her husband.
I have decided to do that in many ways. If I decide that we are having salad for dinner, I buy a bag of salad. Salad kits are available. It is way easier than chopping stuff. And there is enough for four typically so if you want lunch the next day you are good.
It can cost a little more but what is the harm in embracing the changes as a care partner. My Cheryl believes that Christmas is any minute now. Until a week or so ago I was resistant and felt the need to correct her thinking. What ever for? Why generate artificial stress? She will not remember being incorrect, she only remember that I think her to be wrong when she is certain that she is correct. I could embrace the fact that Christmas is next week and we should put up the decorations.
We got a catalog from Amazon which is unusual by itself but it has kid’s toys in it. I cynically remarked sometime ago about getting Raggedy Ann for our daughter and Anna chided me with – I am totally okay with Raggedy Ann! It could be fun. Between decorating actions my Cheryl searches through several cookie options in the Cheryl’s cookies catalog (too many Cheryl’s in this story) and looks for the perfect Christmas cards in the Printery catalog. Sometimes she is telling me about cards, sometimes cookies. What could be the best one or two? Of each?
The Christmas elf is sitting in the chair ready to help Santa. HO HO HO is on the front door. The little wooden Santa is falling off the closet door. Knitted Santa is on the clock. The inside of the front and side doors are decorated so that Santa cannot get in without being noticed. The decorations are moving along nicely.
Eddie bear always gets booted from his seat next to the telephone. He lost his telephone long ago. He seems to be okay with the rocker and he has a place to hang his elf hat.
Anna makes me smile as I think about it and she is right. It could be fun to shop for gifts for the kids and grandkids. Perhaps I should embrace it. What difference is it if Christmas is a months long event? So I told myself a few days ago that we would go for it.
Now that the decision is made, we should be shopping for the kids.
We need to find sizes or which toys suit which kid best. Laurencia likes puzzles and building things. Virginia is crafty and plays trumpet. Vinny likes Lego kits. Gavin is into online gaming. Regan is off to college next year. Audrey is a dancer. Ellie? Dillon? Luke delivers pizza but his passion is photographic art. Lots to think about. Have I forgot anyone? I have got to find Raggedy Ann for Anna. Yep, lots to think about.
Cheryl has powerful childhood memories about the holiday season. There were many good times, parties, family gatherings and fun. Perhaps it is time to make some new ones.
Adjunct_Wizard 