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.
The ageless question that I ask myself. Why does Parkinson not allow her to sleep and rest?
Tuesday – dinner with friends; A completely sleepless night afterward. Up, down, up, down. Eventually she slept for a couple hours.
Wednesday — nothing special about it, just Wednesday. A totally restful night. She didn’t move when I got up several times.
Thursday — Exercise class as normal. Overnight a couple odd things; teeth brushing at 2AM and Noxzema face cleaning ( I said not church today) she came back to bed. Leg pain — half in and out of bed at 5AM.
Friday was slow moving. Overnight she slept through although she was awake when I came to bed after reading (11:30PM). This morning for the first time she leaked. She was totally asleep when I got her pills at 7AM. She didn’t awaken for her bladder. She did not act upset about it as she has in the past when she occasionally had mistaken perspiration for a leaky situation.
Saturday overnight she slept peacefully. I awakened her at 3AM or so to use the toilet. She easily fell back asleep. She was sleeping deeply when I got her pills at 7AM. We went to church in the afternoon. She missed her 4PM meds in the confusion of preparing for church at 4:30PM. We had dinner with friends after church.
Sunday morning she was agitated and slept fitfully. She was fidgety in bed. In the morning she was worried about something. We went to my son’s house to celebrate a birthday of one of the kiddos.
Sunday night and early Monday morning she slept little. She was certain she had to prepare for the appointment with her neurologist at 3AM. We read the calendar. I showed her the annoying alarm clock that displayed MONDAY. She slept little if at all. I reminded her several times that her appointment is tomorrow TUESDAY. The information did not reassure her nor did it seem to stick with her even as she insisted she understood what I had told her.
Monday (today) she is still convinced she has a doctor appointment.
… 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.
Our little condominium group of fifteen units was built approximately twenty-five years ago. When we purchased this condo five years ago we were very blessed with the fact that our nephew who was also a real estate guy wanted to buy our big old hundred year old house from us as is. Additionally he had this condo in his back pocket ready to sell if the right buyer came along. At the time he was also working as an organist for one of the larger Catholic parishes in the area and this condo was owned by the pastor of the church. Agreements were made, hands were shaken and there was enough slack in the schedule that we had the old wallpaper stripped, the whole inside of the condo painted and carpets steam cleaned afterward. The carpet was able to dry for about a week before we moved in. All of this happened five years ago next week.
Our upstairs neighbor who is resting peacefully with hospice is one of the original tenants. There are two other original tenants (owners). They are all in their nineties.
A young couple who were recently married moved out. She chased her job to Los Angeles. He chased her there. They are very much in love and will do well. Her mother moved in two days ago to fill in their spot.
Our upstairs neighbor subscribes to the Enquirer as do we. Cheryl likes to read the comics and work the puzzles. In the Sunday edition two to three pages of obituaries are reprinted from Legacy.com or wherever they were originally published. Cheryl likes to read the obits and to speculate as to whether she might know anyone.
Our upstairs neighbor used to get up at 6 AM to take a pill she once told me. She would pick up her Enquirer and my two papers. Our papers she would stick into the banister to the upstairs and then walk up those stairs to her condo. We talked about this not long after we moved into our home. I told her I would gladly bring her paper upstairs. She is fiercely independent. She said to me, thank you but no. I very rarely beat her to the papers by the door anyway.
On garbage pick up day she would extend her morning activity to bringing the empty refuse bins close to the building so that the other residents did not have far to walk to put them into the garage. On rainy days over the last couple years she would leave that duty to me. The first time she did that I worried that she was in ill health. When I tracked her down later she said no she was not but the garbage collector had been a bit late she had already collected the papers before he had gotten here. She thought I would bring the bins in by the building. I did not know I was being trained for my new job until this past summer when cancer caught up with her. These days I pick up the papers and carry one up to the ledge in front of the second floor landing so that whoever reads it can find it.
A few months ago she had a surgical procedure to mitigate the progress of the cancer. A few days ago it became apparent that the procedure did not work as well as the doctors had hoped. A dozen or so years ago my sister opted for mitigation after being diagnosed with myelodysplastic syndrome. I think of my sister whenever I come into contact with a dire situation with someone I know. At about the same time my father elected to not mitigate the situation he found himself in after a cancer diagnosis. The outcome was the same for both my father and my sister.
It is possible that our upstairs neighbor is resting peacefully in the same room that my father spent his last days on this Earth. Recently she was moved to the same facility.
When the time comes may she be at peace.
The world will be a sadder place when she is gone but we who are still alive are secure in the belief that she is in heaven. I am glad to have known her no matter how brief that time has been.
An Update: Mary Ellen Welch passed from this life on Wednesday, October 13, 2021.
The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.
Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.
Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.
Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.
Earlier in the month I wrote about Cheryl losing an earring. About two weeks ago it happened again and it seemed that, alas, it was gone for good. I spent a couple days on and off with a flashlight like the Bluebloods and the NCIS guys hoping for a glint or a flash in the deep and weedy nap of our wall to wall carpet. Nada. Nothing.
I found a spec of fuzz on my office floor but no earring. When things are lost in a parkie world I heartily recommend searching where there is the most light.
Well today was the day. The earring magically appeared in the jewelry box.
Hallelujah, blow the horns, kill the fatted calf. The prodigal earring is BACK!
I found Cheryl sitting on her shower bench in front of the dresser in our bedroom. I went and got a kitchen chair so that I could sit near her. She had one of the prodigal earrings inserted in her left earlobe. I was able to convince her to let me put the back onto it to make it stay there. She was waving about on her bench. I put the keeper on and asked if she would let me put the earring in her other ear.
Success! I was able to insert the earring and put the keeper on the back. She kissed me and told me that she loved me. That was great but I was proud that I did not hurt her. My one son has pierced ears but I am seventy-two. It seems like it ought to hurt. I am fully trained as a earring inserter.
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.