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.
I worry more and more about Cheryl’s odd evening behaviors. Quite often afterwards she “wants to go home”. It breaks my heart that she doesn’t know who I am in the evening. It breaks my heart that I cannot find a solution to helping her get out of those behaviors.
I think I have my own anxieties about helping her at home. I did in the Spring when she seemed to be “off on some cloud” about something in the evening. The dementia experts will tell you to confirm and acknowledge the weirdness. That can be really really hard to do. They do not use the word weirdness that is my word for it. I mentioned to my sister-in-law that I am too much of a linear thinker to simply acknowledge and acquiesce this behavior. Maybe I have too much background anxiety about what is next?
It is great that healthcare providers and institutions recognize it as a thing and give it a name. It still gives me anxiety.
Tonight which is pizza Tuesday, it seems to be easing but whether it is or is not will not be known until an hour from now.
Carpe Diem.
It is an hour or so later and it is looking good.
4:20 AM update – 🙂 – there was a problem with the computer that drove her awake. (There was not.) It took a bit of convincing and me doing a pseudo-visit to the computer, she settled back down to sleep.
It is possible that my thought about how to better utilize our space will cause me great heartache. I asked my son and grandson over to do a bit of furniture rearrangement. We do not seem to be as focused on the television as we once were in an earlier part of the journey with Parkinson. Stimulus money from two different administrations left us with new furniture and extra sleeping facilities. The living room remained focused on the television like some early 1980’s sitcom living room. I wanted to change that look. I read mostly but there are a couple shows I like to watch. Cheryl rarely sits for more that 20 minutes to watch anything. She seems to struggle with any story line in any show. So the television is no longer a focal point.
I turned the whole room 90 degrees with the help of my son and grandson. We moved the dining area around a bit also and now the walkways are a little wider to allow for walkers and mobility aids. I have made one slight adjustment. Her recliner is electric and I put it closer to the wall to hide the cord. I have since moved her recliner to the other side of the end table (away from the wall) and hide the wires under my chair and the end table (side table). Her chair is now approximately in the same position as it was previously just turned about 90 degrees. She is comfortable with that position.
She asked me if we need to notify anyone of our new address and she wants to know if she will need a new key. Moving the furniture around makes her think that we have moved to a new condo. I told her that I had the locks keyed like the old ones so no new keys were necessary. I also dutifully instructed the kids and neighbors of our new/not new address.
Dementia is amazing in its scope. In Cheryl’s case location in time and space are intertwined. If I knew the phone number for heaven I could help her call her mom. Sometimes she wants to do that.
Heaven’s phone bank – Hello Heaven. Gabriel speaking. How may I direct your call?
Today I spent an hour or so on the phone talking to my sister, Joyce. She called about 11 o’clock as I was finishing a loaf of bread dough. We talked for a long time as we usually do when she calls me or I call her. We talked about various things and caught up with each other’s activities.
Cheryl could overhear our conversation as I had put the phone on “trucker” (speakerphone) as I finished up my dough activity but eventually I turned off the speakerphone feature because it does not work well with her outside walking and me inside talking loudly.
Eventually we finished our conversation. Cheryl moved by me into her office to do her card thing. I could tell by her body language she was angry about something. I checked in on her. She was sitting in her office so I asked if she wanted the light on. She replied no. I remarked that she seemed angry. She said she was because her cards were all a mess.
Her delusional mind did not have a memory of her sitting at her desk last evening sorting and moving her cards around.
I did not have an answer suitable for her to be okay with so I kept my mouth shut.
Sometimes in the moment seizing nothing is a good idea to maintain namaste.
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.
Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.
The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.
I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.
Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.
Wordle is a game that makes me happy. I found that thought in my head after finding the wordle answer a couple days ago. It matters not that I needed one guess or five guesses. There is no competition. (And yet there is someone on the World Wide Wait that needs to explain to me why it is popular.) It is a personal challenge. It is the first thing I open on my tablet in the morning, well, almost. Sometimes the book I was reading the night before opens itself and I read that for a little bit.
Cheryl is semi-sleeping now. I checked on her. She is “trying to decide” about getting up. We have no scheduled activities or she does not. Actually I do.
Early in the morning while she is in this mode, I have time to look at other things, check email, see what folks are whining about on Facebook. Facebook has a strange way of posting things on my “news feed”. Calendar time seems to have little to do with it, maybe, nothing to do with it. It must be a complicated algorithm. Ho Hum. After determining that there are no email, Facebook or other emergencies, I move on. It amuses me to notice how many folks will post something on a group page which might better be solved by picking up the phone, I look at WordPress to think and gain some inspiration to add to this blog of mine.
The statistics page is often of interest since much of the display intrigues me. Today this little display in the corner seems to report that someone in Thailand looked at my blog.
That in itself is not strange. Type a random thing into Google and it returns all sorts of unrelated finds. But all seven views were of an old post I entitled “Things that make you Happy” and I reread it this morning. I found inspiration in my own words.
Over the past weekend we visited with my cousin Bettie and her husband Herb. It is always a great time with family and friends that we do not see that often. Bettie’s house is perhaps forty-five miles away south and east. It is a pleasant drive through the northern Kentucky countryside and for Cheryl it is a far away destination. On this particular weekend the hurricane that crossed Florida and came ashore at Georgetown, South Carolina had spread its cloud deck inland to eastern Ohio and Kentucky.
On the start of our trek it was bright and sunny. I aimed the car south and east towards Bettie and Herb’s place and drove under the cloud deck. Watching to sun go down from their front porch and side deck was magnificent. My son remarked to me that he had not seen a rainbow before. I do not know whether he meant ever or as brilliant as this one was. It was perfect timing for a follow up question but I did not ask him. Carpe the missed diem.
Like most things I have taken pictures of with the smartphone’s camera, the pictures do not capture the magnificent colors that were produced by nature. The rainbow produced by the narrow view the sun had of the under side of the cloud deck and upper misty air was brilliant and exceedingly bright. The pictures simply do not do it justice. But being there with family and friends and watching a unique sunset made me happy.
Happy to be alive and happy I was able to share the moment with Cheryl.
I think that when I want to do something with Cheryl, parkie time shows up to slow things down. It is inevitable. She will say- let’s go or are you ready to go- or words that convey the sentiment that she is ready. Nope. That is a incorrect interpretation of the language.
If I stop to consider parkie time though it makes sense. I thought we were headed to the car. Actually we were headed to check on several stacks of paper in her office before we go. The thing about parkie time is that it has little to do with clock time.
There’s a period of hesitation while one remembers what is happening next and what is required for that activity. If I realize what is happening I can help but sometimes the help is unappreciated. It is a delicate balance of gentle help and unintentional stress. Memory loss mingles with confusion to create stress.
The important thing is to not respond to the smart-Alec comment or to make one. Running down the road jabbing at each other with pointed sticks does not accomplish much but admittedly can be momentarily satisfying to both. Resist doing that. The road is smoother. There is less apologizing later. Certainly there is less guilt at having trod all over someone’s emotions.
The disease is not them. It is hard to remember that in the rush for the door to leave and go somewhere.
Recently a classmate and friend of Cheryl passed away. Sister Mary Claire Hausfeld was not in Cheryl’s ICA class. Cheryl went to grade school with her and Mary Claire went to OLA high school. She found her vocation after high school. But that is not what I want to tell you about.
In a wonderful and well written obituary about Mary Claire and her life of service S. Delouise Menges writes about grace in Mary Claire’s life and how to recognize grace in our lives.
This poem by Marilyn Chandler McEntyre that Mary Claire used in prayer is a beautiful and touching meditation.
How to recognize grace
It takes you by surprise
It comes in odd packages
It sometimes looks like loss
Or mistakes
It acts like rain
Or like a seed
It’s both reliable and unpredictable
It’s not what you were aiming at
Or what you thought you deserved
It supplies what you need
Not necessarily what you want
It reminds you, you’re not in control
And that not being in control is a form of freedom
I have read this over several times and the line that strikes me most is “And that not being in control is a form of freedom”.
This life of Parkinson gives that statement new perspective. Little of our life is able to be controlled and I for one would like life to at least be predictable. It is not predictable either and that can be a form of freedom if you let it.
“Feeling blessed” – is a phrase I associate little with this disease of Parkinson but I am learning to understand the meaning of that phrase with respect to helping others and help from others. Cheryl used to tell her mother that there is grace in accepting help from others. (:-0) Once in a while I say this to Cheryl when she resists my aid.
It is easy to get caught up in “why me?” It is easy to not take note of all the kind and loving ways that people around you are willing to help in some small way. Most do not even hesitate. Wear your gray hair to the door of a restaurant and the guy coming the other way will hold it for you. Carry a walking aid or a cane to the same door and kids will jump up and open the door.
In our life with Parkinson we experience these small helps a lot. Cheryl wants to do for and help others even when they are helping her. There is goodness in everyone. Even when one is certain that the other person has not applied themselves and therefore did not achieve the expected benefit help is given without expectation of gratitude.
From the point of view of “little helps” everywhere often spontaneously offered to us, we are blessed.
Our friend Jane is a great help to me. She has organized a network of care around Cheryl and me. She has contacted many of the group of women that she and Cheryl used to play bridge with. Cheryl is unable to play bridge any longer. The game is simply too mentally taxing for her. We used to play Scrabble in the evening and I did not want to play because Cheryl would always, often anyway, kill me score-wise. With Scrabble and Bridge and other competitive thinking sorts of games, she excelled. Her math and logical brain rose to the challenge.
Jane and the rest have organized themselves into Wednesday visiting parties. Jane comes across the hall on Monday so that I can ride my bike or do whatever. Barb comes on the last Thursday of the month to take Cheryl to lunch. Cindy has been coming over on Thursday in the afternoon so I can go do whatever. I usually ride my bike in the warmer months. Linda has been coming on Wednesday but her sister is very ill and she needs to be with her. (She may not be with us much longer.) Jane is a blessing to us. As is Linda and Cindy and everyone of Cheryl’s friends.
Family …
My son and daughter-in-law have been a focus of my need to get Cheryl out away from our little condo on the weekend. David and Melissa are almost always available for a weekend visit. They live nearby in eastern Indiana. The drive to their place is such that I takes us through the fringe of the city into enough rural properties that here and there are planted corn and soybeans. It seems like a long trip to Cheryl. When we get home her reaction is much like coming home from a long trip.
A few evenings ago I invited a couple of Cheryl’s cousins for dinner. It was a great time. Steve and his wife Marisa sent an email just checking in on us a few weeks ago so I invited them for dinner. Cheryl insisted that I invite Lois who is another cousin from a different direction. 🙂 Lois, Steve and Risa did not know each other except through inference by family name(s). Lois and Steve are cousins to Cheryl but not to each other. Nevertheless the dinner was great. They found common reference by neighborhood. They physically do not live far apart.
Cheryl talks about Lois a lot and her mom Aunt Jean (great aunt). In her childhood she got a lot of hand me down clothes from that direction. Lois is a couple of years older. I may have mixed up the story a little. I am merely trying to track down some of these childhood stories before the people in them are gone. Marian and Tom, Steve’s mom and dad, are gone from this world. Their family is younger. I remember Steve as a boy coming to some of the long ago family gatherings at Sharon Woods Park. Lois is the last, I think, of her family. Her sister Maureen we used to see occasionally at Macy’s in Kenwood doing her supervisor shtick. She is gone.
As we move on and Cheryl resides mentally in her childhood, I have taken it upon myself to reconnect with these people. Many of whom I do not know personally except by my wife’s stories. And her memory is failing her in bits and pieces and fits and starts. I think it is becoming more urgent for me to do this and I do not know why I feel the need to do this other than it brings her great pleasure to talk and reminisce with her cousins. Her most pleasurable stories seem to revolve around the many large family gatherings and smaller group visits.
On my never ending journey to help Cheryl experience the best of her days even though Parkinson is trying to steal the memory of them from her.
We went to visit one of Cheryl’s good friends and former classmates Rosie. Rosie is Sister of St. Francis in Oldenburg Indiana. I always learn things about religion, spirituality and altruism from S. Rosie. She probably does not know that she is doing it. She is so very gentle and kind with Cheryl when we visit her. Cheryl and she were close in school.
Many years ago S. Rosie had a very severe illness which put her in a coma for a bit and ultimately she had a near death experience. She strongly believes that she is able to see and interact with the spirit world. This conversation developed as Cheryl shared that she sees her sister and her mother often. Both are recently deceased. I can attest to this connection Cheryl has with Janice and Elaine. I am guilty of reminding her where one or the other of them is when she bursts from her office and wonders aloud where they went or needs to call one of them on the phone. My answer is to point out that I do not have the number for heaven if she wants to call but if she closes her eyes she will be able to see and talk to them. Little did I know that that is a good idea. I was merely scrambling to help through her current anxiety of location and place.
When Cheryl was describing the experience to S. Rosie, Cheryl with gentle probing from Rosie admitted that she was worried about “going crazy” and that fact is disturbing. Rosie suggested that she embrace the vision as real and told a story her a story about one of her encounters with a spirit that had twirled her around while Rosie was walking with another friend. Her friend asked what happened to her and Rosie described her encounter. Her friend responded with exactly, I saw your side of it. We talked a little about whether Cheryl’s disease had detuned (my word not Rosie’s) her logical, reasoning side of her brain and allowed the intuitive, spiritual connecting brain to emerge. Occasionally I wonder if that occurs to many of us naturally and those who have that insightful perception are ridiculed as crazy or crackpots so they keep their vision to themselves. (What happened at Fatima?)
All of us talk to people that may no longer be in this world but we were close to in some fashion before they passed into the next world. My sister and I tease about things that Mom would say to us. Every time I carry an Amazon box out to the recycle bin I hear Mom say, “Don’t throw away that box. That’s a good box!” I think she told me that in the flesh a week or so before she passed away. It may sound unrealistic but I can actually hear her voice in my head. My sister Joyce tells me that Mom tells her to, “Water that plant!” We both have different mother-child experiences.
The brain floats in a soup of proteins, hormones and other chemistry. The real world is not inside our brain but what is there is our perception of it. Some of Cheryl’s sensory systems are defunct. She has not had a strong sense of smell for about fifteen years. (Handy for the husband who does not feel like taking a shower that day.) She can still construct smells in her head from sight and texture and perhaps the saltiness or sweetness she can still detect with her tongue. Her brain reconstructs smells from experience and using different pathways of sensing its surroundings. What if the intuitive side jumps up and says, “I see something and it is …” The worldly side takes note and Janice appears.
Perhaps one should not be dismissive of hallucinations and visions. What happened at Fatima and other places where incredible things were see by those who could see and were not afraid to tell those who could not? My spiritual self tells me that there is a connection among all sentient beings in some way. Lovers of dogs, for example, are heartbroken when an old companion dies. (Cat lovers too.) I once had a guy who worked for me who wanted to claim funeral leave when his life long German Shepard companion, he was a young man, passed away. And I understood his grief but it did not fly with the HR crowd at that company.
What if Cheryl’s deterioration of her logical, mathematical, connected mind allows her to see with the other part of her brain that does not do math? Cheryl revealed to Rosie that she was not scared of the vision of the spiritual side but she was concerned with getting there (and at that point she began to weep.) Her mother and her sister are very real to her when they appear. She talks to them about what is happening in her life.
She sees others in our little condo area. There is “that person who is in charge” of the school. There is a group of women who hang out occasionally in our window seat in our bedroom. (I started wearing pajamas to bed instead of just underwear or nothing.) Shortly after one of our residents in the next building passed away in July she saw a gray haired woman with a short hair style charging down the back hallway as we were leaving to go somewhere. The woman was vivid enough that Cheryl asked me if I had seen her. It could have been Marty. Cheryl’s description of the woman at the time put me in mind of Marty. A couple of weeks previous I held Marty’s arm to help her step over a curb stone during a meeting with our landscaping company to discuss a new plants installation near her front door.
Those visions do worry her. She seems to understand seeing her mom and her sister but seeing others who are not family is worrisome to her.
But what if she merely has a view to some other elsewhere some other existence? What if?
Adjunct_Wizard 