Frustration and Anger

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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.

Carpe Diem!

Our Neighbor is Dying

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But life goes on around her.

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.

October

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Holy Moly it is October.

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.

Carpe Diem. Happy October.

Love and Confusion

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I don’t know which Paul you are but you are acting like the one I love.

She said that to me a few days ago. I did not know what to make of it other than love was in her head and confusion was right alongside it. This is a sad feature of our current journey.

We search for meaning in life. Some find it with religion. Some find it in mindfulness. Some find it with spirituality. (There is probably a Venn diagram to explain it better.)

I have no more prescience for my life than anyone else but in my case it has been made plain to me. It is not what I signed up for but it is what I have been given.

Carpe Diem

THE EARRINGS ARE FOUND

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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.

Carpe Diem. Anything that I can do to help.

Sunday used to be Different

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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.

An Odd Conversation

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It is an odd conversation for two people who have spent the greater portion of their lives together but these days it is less so. Last evening Cheryl was lucid in her confusion. She was unsure of where she was and she was unsure of who I am. We calmly discussed those things. She seemed to know that I am Paul and that her husband is Paul but was unable to associate the two concepts in her mind. We talked around those concepts for some time. She expressed the fact that it was sometimes a little worrisome that we were staying here for long periods of time.

The conversation changed to; if you could take me home then I could get some rest. I think I am very tired. A friend and work colleague had told me a story recently about a similar experience with his mother who had Alzheimer’s disease. He got her to put on her coat and rolled her around in her wheelchair and announced, “We’re home!” I tried a similar tactic.

I got her to bring whatever she needed with her and we got in the car and drove around about a four mile long rectangle. On the last leg we turned right onto our street in the same way we might have come from other short trips to take a walk or visit the kids, she said when we get home to the condo, I am going to get ready for bed. She had recognized the approach to our home from the west. Her mind said to her – we are home – I guess. She was okay when we walked in the door.

As I went back out to the garage to turn off the lights and lock up she said to me,”You’ll call me when you get back home?” This is something her mother always wanted the kids to do. Cheryl always called her mom when we arrived home after we left her house to say we arrived safely. I do not know if the other kids did this or not.

I told here that I would stay with her until she was settled in. I did not ask her – who am I? I have done this in the past and although it sometimes bumps her into current reality it was not working tonight.

Earlier she had told me; you are Paul but a different Paul. It seemed as though she was offering an answer that she thought I wanted to hear much like a child trying to please a parent would do. After “taking her home” I did not want to disturb that. I told her again that I would stay with her that night and she seemed satisfied with that.

Sometime you have to drive around the block to get to the start and when you care deeply about a person you love you can easily go the extra four miles.

Carpe Diem.

This Morning a small Success

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I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.

I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.

I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.

As I headed that off I reiterated that she did have exercise class today and she should dress for that.

After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.

The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.

Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.

Damn! We are out of Hall’s.  It is the only,  absolutely the only thing,  that can relieve a Cheryl scratchy throat.  (I am whining a bit. I have tried to push other solutions.  All have been rejected, alas.)  The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.

Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.

I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.

Carpe Diem

Purses, Zippers, Pockets

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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.

Carpe Diem and happy shopping.

No Church Yet

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Last night we sat outside for a bit and watched the International Space Station fly over. She was very excited to see it. She had found an article in the Cincinnati Enquirer a few days before that described upcoming events in the night sky.

We live on top of a hill and have a fairly unobstructed view of the horizon to the west. There are buildings, of course, but all in all not a bad view. After the the ISS disappeared from our view behind our building we went inside and she wrote this note to our children and a few other random family members. She wrote it in Word and printed it out and then asked if I could send it to our kids. This morning I did just that.

Hello, Anna, Scott, David, Janice, Jan, Nancy, Bill Farmer, Iris, Virginia, if I forgot someone, please pass this information along,

During this time of the year, there are often beautiful sights in the night sky. Paul is aware of these because he often researches some of the software that is available. You do not need to have access to special software… although it is
helpful. You can see some of the stars and planets without any special equipment; you can watch the International space station as it travels across the evening sky. These sights are magical! Many if you have clear skies at night… some of them are visible in the early evening. When you learn that there is a lovely event that is expected to occur, get the kids ready for bed, explain the event to them… where to look in the sky, etc., they should ask their
teachers about the night sky.

We found our information for tonight’s show in the Cincinnati Enquirer, the subtitle is “Crescent moon next to dazzling Venus.”, on page 5A.

Love,

Grandma. Aunt Cheryl, and any other relatives who may enjoy this.

The morning started pretty normal. The VERY LOUD ALARM clock awakened me to get her 7AM meds. I helped her to the bathroom and waited on the edge of the bed for the toilet to flush. She took her meds. We laid down again for a while.

Later I got up to find coffee and watched TV for a bit until Cheryl got up. She popped out of the hallway to our bedroom all excited because she could not find any underwear. In my stupidity I pointed out that she had underwear on just no pajama bottoms. (She was confused getting up this morning but I did not understand the extent of her confusion.) She was intending to get dressed for church but I did not realize this at the time. I was pleasantly ensconced in my Saturday morning coffee and newsy programs.

The newsy programs I have found to be not so newsy. The pattern is repetitive and to me boring — Covid we’re all gonna die; the latest political kerfuffle; desperate folks swimming the Rio Grande trying to get to Texas; some weather activity. Lately there seem few MASS SHOOTING events that make the news. Are they becoming commonplace? Or is it merely that most do not rise past some low bar of heinousness that is defined somewhere.

Nevertheless She was looking for underwear so I went back with her and found some undergarments which she pronounced good. I asked if she needed more help and she said no. I resist being a helicopter care person because it seems to anger her when I give unsolicited help. I went back to the coffee and pressed play on the DVR. This is a handy way to watch a two hour news show which is actually fifty-seven minutes long with a lot of breaks for commercial messages about Prevagen, Progressive insurance, the Good Feet Store, Kroger’s and the local weather. With a pre-recorded program you are able to fast forward through the windows direct USA.com and the rest of the crap that comes with commercial television. Cable TV is much better with no commercials and the inability to speed through the ads. (Facebook has this same model.)

After a suitable period of time, it takes concentration to speed up the saved file and catch the actual stories from the Saturday news show, I returned to the bedroom and realized my error. She was all dressed up for church and fidgeting with her earrings in front of the bathroom mirror. I apologized to her and told her that church was not for seven more hours. It is not time to go to church yet. But she was dressed and ready to go.

She blew up at me a little. “No one tells me. Neither of you told me anything!” I was two people. One in the mirror and one behind her. I admit I did not think of it. Almost everyday this week when she woke up she would ask, “What time is mass again?”

This seems to be turning into a constant in this life. For the past few weeks she awakens thinking it is time to go to church. I usually tell her – no this is (mon, tues,wednes,thurs,fri)day. Church is on Saturday afternoon. If she does not ask I do not tell. It worked for Bill Clinton, alas, not for me.

I find in myself an anxiety about getting something fixed before she spirals off into the weeds. By this I mean some task with which I have decided to help her. Her interests are not always my interests. Cheryl has taken on the task of sending thank you notes to those who have participated with or donated to the Sunflower Rev It Up for Parkinsons walk/run/ride last weekend. In this new world of no white pages phone books and no landlines it is harder to discover the addresses of those who have disconnected from the 48VDC copper transmission lines. For a parkie with no sense of how else to search that information it is impossible.

There is some confused repetition to her actions and to our life. I will tell her I will do something for her and find that a few minutes later she is doing whatever that may be instead of waiting for me to complete that task. I admit to not being johnny-on-the-spot about it. Her needs are not mine. Her interests are not mine. And I might have to gracefully let go of whatever mundane task I have given myself to do.

It stresses me a bit. I worry about letting her wander off into the weeds of Parkinson confusion, delusion, hallucination and altered reality. But it does provide some relief to me as long as it is not harmful to her. At least, that is my selfish view. Even now as I pour my inner thoughts into this commentary she is reading and re-reading a two year old story she wrote about the beginnings of whoopadiddee as though it is new.

I suppose the idea that nothing and no one cannot fix her confusion is most troubling to me. As long as she does not seem to be lost completely to me I let it flow around me. It is disturbing to my soul. Occasionally I am two people, the one who lives with her and that guy who brings the pills in the morning. Once in awhile I am Paul.

Alas, Carpe Diem.