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.
The little people who used to visit are back. That is my own little joke. The little people never really left our home. I was merely ignoring Cheryl’s behavior.
They were back in a vivid sense to Cheryl. This chair arrangement is left over from their visit. She was showing them the pictures on the frame. She went into full on grandmother mode describing the picture to the kiddos.
I asked who was there and she replied Natalie and Max.
We left a little while later to got to our support group meeting. While there she asked if I had called home to make sure the kids were all right. Apparently they were more vivid than at other times in her head. When we returned home she looked for them.
We sat and watched Bob hearts Abishola which is her new favorite show. The kids seemed to be gone for now.
When I tell her that there is no one else here except us I feel as though I am standing in the back of a crowded room saying this to her.
Today, earlier, she asked me to rub her hair conditioner into her scalp. I do this once or twice a week when she asks. She referred to me as “Mom”. I had a little petulant moody reaction and said “I am not your mom.” She said, “No. You are my dad.” I replied that I was not her dad either, I was her husband. To which she said, “But you are the one I love.” (AHA! Edie) She merely could not pull the name and relationship out of her head.
It was another Aha-moment in our life together. It was a very important moment. All of my life as an engineer words have had a very specific meaning to me. Perhaps the words should not when understanding Cheryl’s needs.
Carpe diem — hunt for the special moments of insight and empathy. Those are special. If you miss them they may be gone forever.
… and then Young Sheldon for a while but the young Sheldon is a bit more melodramatic and less fun and funny. She has lost interest it appears to me.
I, however, have become attracted to the rest of the characters. I am watching how the child actors age; a midlife crisis development in the family; Memah (grandmother) deals with life and widowhood; how life in Texas is portrayed. Sheldon’s role is reduced to narrator. He has become a semicolon between scenes. I think his older brother Georgie is getting ready to branch out and chase his entrepreneurial instincts and fly to the world of small business.
As the last season ended George (father) is struggling in his marriage and is feeling a little put out by Mary (mother) who is certain only she can take care of the family. He winds up going to the local bar to have a beer or two and enjoy the company of others rather than stay in a bickering duel with Mary that he is certain lose. He meets up with his newly divorced neighbor and they chat about old times and other things about their lives. They both whine a little to each other. George has some pain in his chest which they perceive as a heart attack.
The beginning of the new season episode tells us that it is just gas. Everyone is relieved. George and Brenda (neighbor) spend some time working through their (perceived) guilt about talking in the bar. George with his newly divorced neighbor is searching for meaning in life. Brenda is simply looking for companionship after her marriage fell apart. They finally sit at her kitchen table and she suggests that they both just wanted to feel special for a bit. A very succinct conclusion to the show.
All of us have a need to feel special for a bit.
Folks with a chronic condition that makes everyday living difficult want to feel special for a bit but separate from their condition. The condition is not them.
Restful as an old man with the bladder storage capacity of a peanut
Satisfying as a rock star on speed
Quiet as Michael Jackson after practice for a concert
As restful as an hour after sixty-four ounces of colonoscopy prep
Rejuvenating. Much like being chased by a mother bear after you’ve noticed her cub behind you on the Appalachian trail.
Adrenalin rush leads to melatonin misfire
Last night was a particularly unsatisfactory overnight experience. It seemed as though Cheryl did not sleep at all nor did I. I tried a new idea out on myself. Instead of becoming angry with her disease, her insomnia and myself for getting angry I laid alongside of her thinking of funny ironical and satirical ways to describe insomnia. It is hard to be creative at 2AM. I kept falling asleep. When I awakened again, perhaps an hour later, feeling a little guilty for falling asleep, I was worried that today would be especially bad.
Yesterday we had dinner with my cousin and his wife visiting from the west coast. It was a pleasant afternoon and evening full of catching up and conversation. Cheryl seemed to enjoy it even though her evening meds attacked her and she sought refuge on a couch in the back office of my cousin-in-law’s condo. I think that embarrassed her even though we assured her that she should not be.
On the way home she expressed how much she enjoyed herself. When we got home she hunted for comfy clothes and we watched a favorite show together. She went to bed at her normal time around 10PM and I sat up to read for awhile. When I went to bed later she was still awake but that is not unusual. She is often awake for a bit after she lays down. Sometimes it is a long bit. Last night it seemed to be all night.
Early this morning she told me that the kids needed breakfast. I think I raised my voice when I told her that there were no kids living with us but she had left the bedroom. I am sticking with that excuse.
Someone said that you can sleep when you are dead. What a morbid thought that is. So, I began my thought experiment. Some of them I remembered this morning.
Haiku: Adrenalin rush; Sleep is disturbingly sad; Melatonin fail. 🙂
Perhaps I will get my sonnet maker out and think about that for awhile. Or I could read a book and nap later today.
Lately I have been experiencing a bit of what I think of as Caregiver Burnout.
We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.
Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.
I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂
An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.
Over time I have taken over the duties that she used to do in our home.
In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.
It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.
At least we are vaccinated and boosted. The road is pretty long even when not visible.
This story is about nostalgia and remembrances of past years. We used to go to 9AM mass. When the kids were small it was 10:30AM mass. Over the years as the priestly population dissipated and became smaller the parish we belong to reduced the number of masses from five to three to two to sharing a priest with another parish. Word is that is to change again here shortly as the Archdiocese of Cincinnati tries to find a solution to the priest shortage. The Roman Catholic church’s own rules keep it from fixing its own dilemma.
A few years ago we switched to attending 4:30PM mass on Saturday. Cheryl’s medication, sleep and “feeling good” circumstances changed when she could tolerate being in church.
Covid-19 changed it again. We stopped attending for a while. The archbishop said it was okay to not go to church on Sunday. People in secular society argued about wearing masks inside. The pandemic eased a little. Health officials said vaccines are coming but wear a mask for now. People argued about other folks telling them what to do or not to do. No one argued about the archbishop saying no one need attend mass. Attendance in person was no longer obligatory. (Is the archbishop telling us what to do?)
The church scrambled to put the mass online as a streaming service. Cable TV still provides a local service channel with an incredible amount of boring but sometimes interesting stuff. A live streamed mass with no videographer or camera operator can easily out do the cable public channel for uninteresting content. There are many boring live streams now. Many live on with YouTube. Seems like every parish has its own live stream. Public health and government officialdom said it was okay to go to church again but wear a mask.
And then little blue ribbons appeared to separate folks from sitting to close together in the pews. Hand sanitizer appeared in the back of church with little baskets of disposable masks. Everyone wore a mask to keep from inoculating others with our asymptomatic illness for many weeks. The ranks at mass were very thin especially the old people’s 4:30PM mass. An entire year went by in this fashion.
Random arguments started about vaccines and how they were made. Experts who knew little about the process spoke anyway spreading the gospel according to Dimwit. The church got on the side of social empathy and “get any vaccine you could.”
Are we riding the horse into the dirt? Many years ago I worked for a large company that kept shrinking and shrinking until it no longer existed. Remnants of it are still around but it no longer exists as a whole. I met one of the former management folks later in a different company around town. The conversation often drifted into what happened? The perceived fault always lay with others or some insurmountable object, however artificial that may be.
Is that happening to the Catholic Church? It seems that many stalwart parishioners spent a great deal of time analyzing what church meant to them. I know I did. The church is changing. I am changing. For me the church and parish is a spiritual socialization. And I like the stories in the bible, many of which I have a different take on then the priest might have in his lecture after the readings.
I started down this thought about Sunday not thinking about church in particular. We used to get some donuts on the way home from church and sat and ate them with coffee for me and tea for her and watched the prerecorded CBS Sunday Morning news magazine show. We did this for many years. I miss it. Cheryl no longer sits for any length of time longer that fifteen minutes to watch anything on TV. We would sit quietly and watch with only occasional comments from either of us. Later in the afternoon we would prepare a meal for her mother and my parents that evening. Sundays are different now. Some of that is age and some of that is the disease of Parkinson. Sundays are just different.
Carpe Diem! Even when the days are short and numbered, remember that we are all flawed humans but if we pool our talents the flaws are out numbered.
Cheryl really did not use a purse much. She had one she used when the children were small but with small children there is a lot of extra baggage and equipment so overtime she consolidated everything. So it is my recollection that she did not carry a purse but I am thinking that is probably incorrect.
As her neurological condition degenerated I encouraged her to carry a purse. I helped her find a purse that had a long strap that she could drape over her shoulder and would not require her to keep a hold of it with one hand. She needed more and more to have hands free to keep her balance and grab me or the door frame or the car or the back of a chair or the back of a bench or a stair rail or something.
The first bag I helped her find was a smallish brown leather purse that was perhaps 10 inches by 8 inches and a depth of 4 inches. She carried little with her. In my maleness it seemed adequately sized for the couple of things that had to go along. Glasses case, small wallet, keys, a pen or two, a small package of tissues, this purse had room aplenty for all of these. We left Target with our prize one evening after eating in Frisch’s restaurant across the road from Target.
Two things happened over a period of weeks. The strap, although it seemed adequate at the time became inadequate. The capacity mysteriously reduced in much the same fashion as a cotton T-shirt that had resided too often in a hot water bath to be cleansed.
Back at our favorite Target store we found a somewhat larger green cloth purse with a different style of strap which I thought could be made much longer. Alas I was foiled by the fact that the straps did not get longer as it first appeared. The straps converted the purse to a mini back pack. Unsure of what to do about that situation or whether it might prove useful for Cheryl, we gave it to one of our granddaughters who happened to be visiting a few days later.
The selection at Target seemed to be shrinking. I started to search Amazon for a suitable new carryall to replace the rapidly shrinking brown artificial leather messenger bag. One night the pinkish purple purse appeared in my Amazon search window. It is available in other colors and made of a canvas material. Most importantly Cheryl likes it.
It has other features that are not readily apparent. It has a total of five zippered compartments. These provide the entertaining feature of hiding most anything that Cheryl puts in there. Additionally there are several internal zippers that provide further confusion for any parkie. It is, even without these extra attractive accouterments, a fine messenger bag with plenty compartments to organize one’s stuff whatever that stuff may be.
This purse can be a distraction and an entertainment. Cheryl often zips and unzips one or two or three zippers as soon as she spies this purse benignly resting on the edge of the table as it is shown above. It is a delicate dance between her and the bag. Men cannot understand the attraction to the zippered compartments.
Parkinsonism must provide a bit of obsessive-compulsive attraction to the zip itself. Much like a fidget spinner the zipping happens but somewhere in her thought process she puts stuff in, maybe takes it out, maybe not, maybe moves it so that it is in a better situation.
She seems in no hurry to disparage this bag and it features. Sometime she will complain that it has too much in it. That is good information.
I try to unobtrusively observe where she has placed objects in the purse. I often place her medications in her purse before we go somewhere if we might not return before the next dose. Have you ever watched the guy with three cups upside down a pea or a pebble underneath one of them. Same thing with the zippers if close attention is not paid.
She becomes anxious about not knowing where she is or who I am. Two days ago that happened as I was listening to the 9/11 broadcast on network television. In New York they had a solemn reading of all 3000+ names by various relatives and occasional commentary like – I never knew you Dad but I miss you. Incredibly sad and moving.
Cheryl became anxious and her world collapsed for a few minutes. Perhaps I should have turned the program off or at least turned down the sadness and remembrance of that day.
On the following day we participated in the Sunflower Walk Run to raise money for Parkinson’s Research. It was a wonderful day with the kids and family. Cheryl at the end of the day said, “Thank you for the nice day.” It was a nice day. But slowly, as often happens as the day wears on, she became confused about things. She was worried that she could not figure out how to get a list of participants so that she could invoice them for their donations. (her words) I gently pointed out that the U.C. Foundation had already taken care of that and it was not necessary for her to concern herself with collecting money.
And just now she asked if I noticed that someone is placing Jack-o-Lanterns in the bushes and woods behind our house. The sun is lower in the sky and as its light filters through the leaves it projects patterns much like a Jack-o-Lantern on the forest floor below. It is fascinating to look at the woods out back with another’s eyes. She shows me new things each day.
At the left is a view of the woods. At the right is a zoomed in view of the light patterns through the screen on the back patio. The one on the bottom right, even I can see how she interprets as a Jack-o-Lantern.
Sometimes Carpe Diem means to stand in her shoes and see through her eyes.
Today is a sad day. Twenty years ago we were at Cliffty Inn in Indiana up the hill from Madison. We were on a spontaneous vacation trip.
The whole world seemed very quiet that day as we made our way to our eventual destination. I realized sometime later that morning that there were no planes in the sky. There were no contrails.
All brought on by a fairly well to do Saudi Arabian who somehow felt slighted by the U.S.A.
Well, Osamba bin Laden, you were evil incarnate. It is so very sad that you did not understand the Quran when you read it.
God is great but you did not understand that idea and believe.
My cousin called my writing poignant. It is a word of which I do not have a clear meaning. He called to wish me a happy birthday a few days ago. Instead he caused me to think about my list of childhood memories some more. The list is something that I work on occasionally as the mood suits me.
Poignant to me means personal, important and a little bit sad. So, I suppose this little blog of mine is poignant. It does come from my heart.
But more to the point why do I find anger in myself when I am attempting to be phlegmatic and calm and loving? Cheryl is often unable to help herself and unable to ask for help with certain things. It is not her that finds this behavior satisfying. It is simply her disease. I tell my inner self this over and over but it does not always last.
Let’s try earrings, for example. She loses them. She cannot get the little clip on that holds them to her earlobes. She loses the little keeper. I bought a box of assorted earring backs on Amazon. A thousand of them for $6. Often I find myself searching for something that requires the sight of a twenty year old person. Can you detect the creeping anger? (smiley face here)
Cheryl did not have her ears pierced until after we were married. Whoever pierced them was perhaps nervous about causing pain in another human being. Whether or not that is the truth, she flinched when poking the hole in her right ear at least. This has made it hazardous to get that earring inserted properly throughout her life. Her Parkinson’s wiggly motion makes inserting the post worse. Her occasional numbness in her fingers makes it virtually impossible and for some reason this drives me crazy. (smiley – sad face). Part of that might be because I want to find the beautician who did this originally and get her money back.
I know not why I focus on earrings for my anger. I was stuck there for a bit last evening when we went to church.
The opening hymn : Healing River of the Spirit
Healing river of the Spirit, bathe the wounds that living brings. Plunge our pain, our sin, our sadness deep beneath your sacred springs. Weary from the restless searching that has lured us from your side. We discover in Your presence peace the world cannot provide.
Wellspring of the healing Spirit, stream the the flows to bring release. As we gain ourselves, our senses may our lives reflect your peace. Grateful for the flood that heals us, may your church enact your grace. As we meet both friend and stranger, may we see our Savior's face.
Living stream that heals the nations, make us channels of your power. All the world is torn by conflict; wars are raging at this hour. Saving Spirit move among us, guide our winding human course. Until we find our way together, flowing homeward to our Source.
I take Cheryl to church as long as she is feeling up to it. I have little interest in church and religion but she does. I do however sing hymns that I know and am comfortable singing. (It is one of the things on my list that I referred to above.) Sometimes hymns touch me in an inexplicable way. This is one. My inner anger melted away.
After the service we walked through the parking area which was covered up with booths getting ready for the last day of the festival at our church. We ran into some friends and Cheryl began talking to Kay. I rudely interrupted to ask my wife if she knew to whom she was talking. She told me her name was Kay. I was rude. I suppose I was worried she did not know Kay’s name. I was wrong about that. It was not necessary to be rude. I apologized and explained to Kay.
I suppose church had gotten Cheryl out of her previous couple of days where she did not know who I am and where she lives. I was unaware and over protective.
Every day is a winding road. Reread the last two lines of the hymn. (smiley face)
MINTS– For years and years and years Cheryl’s favorite candy was peppermint. She liked it in most any form but we always and still do have a glass candy jar with peppermint lozenges (losengers is how she says it). She no longer eats these. We used to buy big bags of them at Sam’s Club and later we found that we could buy them in bulk at another store. We do not buy them any more because she no longer eats these.
After eating at Skyline Chili restaurant we still get York peppermint patties. We used to also get these at Sam’s Club but Sam’s is closed near us. I buy the stuff we used to get at Sam’s Club from Boxed Up online now. I have not looked for peppermint or York patties online at Boxed because she does not eat them anymore. I am not fond of peppermint.
pancakes – I am a big fan of pancakes. Blueberry pancakes, chocolate chip pancakes, fruit pancakes, it does not matter, all pancakes are good things. Pancakes are better when you do not have to make them. It is better to show up and eat.
For awhile I made pancakes for breakfast two or three times a week. Perhaps I overwhelmed Cheryl with pancakes for breakfast. For a long time when I suggested pancakes she responded that she would rather have cereal.
I am not fond of cereal except hot cereal. I am a big fan of grits and oatmeal if the oatmeal has been helped out with dried fruit and cinnamon. Grits are good anyway they come but cheddar cheese really enhances the experience. Shrimp and grits is just heaven in a bowl.
Lately we have been having pancakes again. Today we had scrambled eggs and toast.
calendar – The calendar seems to have lost its meaningfulness. All though our married life we have had a family calendar to record events. With great ceremony the new calendar is lain on the dining room table in the week between The Christmas and New Year holiday. Known events such as birthdays and anniversaries are individually recorded. Regular meetings are noted as well. Any doctor appointments and such are added. When January first comes around the new calendar replaces the old one on the bulletin board of important stuff and restaurant take out menus.
In the past year or so Cheryl has developed a kind of date dyslexia. The calendar has little meaning for her. Not only is she unsure of the day week but she is unsure of the week itself and how long a month is. I noticed this when she wanted to send birthday cards out for the following month earlier and earlier. One month she sent them out so early that she forgot she had sent them. People towards the end of the month got two and in one case three. I started helping with her birthday card scheme. It sometimes works. She is not very accepting of any method that I create to help. It has to be her scheme. We develop a new scheme each month which is not a satisfactory solution.
HOME – When do you think we will go home? I point out that we are home. Yes, I know we are home but when will we go home? – she says. I have always thought to myself that my sense of home is merely being with her. This thought occurred to me many years ago. These days, since she is on and off unsure of where home is, I think that I am a bit unsure of that myself. I detect her slipping away and that causes caregiver anxiety. Where will home be later?
DECISION – “trying to decide” is a phrase she uses when looking for earrings. Unfortunately in her current state it is a very hard task. This has been true of most of our married life. These days with Parkinson adding a factor of confusion, the deciding is measurably harder.
Overall maybe none of these actually matters but it is very hard as a giver of care. I knew Cheryl during her robust working years. For a couple decades or so after the kids where grown and on their own we focused on career, social life, travel. For several years she supported me while I worked to complete my M. Ed. and find a teaching job. We enjoyed it. Those years were for us. We have no regrets.
These years are ours to enjoy or not. It is our choice.
Adjunct_Wizard 