Cheers

I have a lot of extra time. Cheryl is being cared for at Bridgeway Pointe and I hunt for ways to fill my day. I take walks on good weather days, this is one of those. The Spring weather is warming. It is not warming fast enough for me. Every time I walk by my bike to get into the car to visit Cheryl I check the tires just because. My plan for the summer is to ride that bike as many days as I can fit into my open schedule.

This morning I was uninterested in the news of the day. Donald is going to badmouth Joe for eight more months. It is impossible to describe how uninterested I am with all of that. The primary in Ohio is March 19th. After that I will no longer hear about what stinkers Frank and Bernie are and the guy with the construction company may get to drive down and fix the wall. None of those guys are telling me what they plan to do make the world a better place. They are telling me what the other guy is incapable of doing. Politics is sport. Trash talk is here.

Losing interest in network television I woke up Prime video and eventually old TV shows appeared inside of the CBS app. Cheers is an old favorite. The theme song came on and took me back to long ago. Making your way in the world today takes everything you’ve got. Taking a break from all your worries sure would help a lot. Wouldn’t you like to get away? ….Sometimes you wanna go where everybody knows your name and they’re always glad you came. You wanna be where you can see our troubles are all the same.

I sat and watched the very first episode (I think) where the bar burns down at 2 AM in the morning after partying hard at a wedding. Afterward I told Alexa to find the theme song and it politely played that for me before switching to a collection of other TV show themes. Nostalgia on some days is good I think.

Stephen Curry was on the morning news yesterday for a bit. He wrote another children’s book. He commented that his theme is to leave the world a better place. I think that is a good life philosophy. I used to have as a goal to have the money run out about the time I did, but that is a low bar.

Perhaps, “Choose happiness and leave the world a better place than you found it. And when you start something, finish it. is my new motto, philosophy, theme.

Spring is coming!

Carpe Diem!

Cheers Lyrics: Songwriters: Gary Portnoy / Judy Hart
… Making your way in the world today
Takes everything you’ve got
Taking a break from all your worries
Sure would help a lot
Wouldn’t you like to get away?
… All those nights when you’ve got no lights
The check is in the mail
And your little angel
Hung the cat up by it’s tail
And your third fiance didn’t show
… Sometimes you wanna go
Where everybody knows your name
And they’re always glad you came
You wanna be where you can see (ah-ah)
Our troubles are all the same (ah-ah)
You wanna be where everybody knows your name
… Roll out of bed, Mr. Coffee’s dead
The morning’s looking bright (the morning’s looking bright)
And your shrink ran off to Europe
And didn’t even write
And your husband wants to be a girl
Be glad there’s one place in the world
… Where everybody knows your name
And they’re always glad you came
You wanna go where people know
People are all the same
You wanna go where everybody knows your name
… Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)
And they’re always glad you came
Where everybody knows your name (where everybody knows your name)

Spring 2024 (a haiku)

I have always been a fan of haiku. Seventeen syllables to evoke an emotional connection to the earth and our surroundings. I am also a fan of sonnet but the rhythm and rhyming sequence often escapes me. Haiku is free verse, an emotion, a summary. It is a painting in words to me. I like to experiment with it.

forsythia in bloom

new life persistent
provides much beauty on gray
wintertime background

Regardless of where we are or what we are doing or what trouble may concern us, Spring flowers appear in the landscape. Take notice of them. A new year of growth is here. Breathe in, breathe out, enjoy your surroundings. This year this lone forsythia left to grow wild in the woods behind our condo shows its beauty once again.

Carpe the landscape Diem!

Admission Of…

What is a good way for me personally to think about, meditate, ponder my own feelings and emotions as Cheryl adjusts to her new environment? I have expressed to others that this change in our lives seems harder on me than her. It is merely a perception but she has adapted and accepts her new digs as hers.

I admitted to myself a few days ago that I felt guilt and doubt about getting Cheryl into Bridgeway Pointe’s Memory care unit. I now think it was the best decision we could make for ourselves. Many people including the nursing staff at Bridgeway have asked me how I am doing.

Dealing with feelings of emptiness…

I feel empty. It is as though a death has occurred.

Every day, all day up until November 15, 2023 Cheryl occupied my waking thoughts. On November 14th she moved into Bridgeway Pointe’s Harbor section room 137. She did not leave my heart but she left. Things were still happening on the 14th but on the 15th when I woke up, I did not have to take care of anybody but me. My day was suddenly empty.

I went to get a haircut and get the oil changed in the car. Two things that I had put off because I either did not remember to do it until it was too late in the day or I could not focus on the day to day activities that one has to do to keep it all moving forward. As I drove off to do those chores I said to myself out loud in the car that I could do whatever today and one of those whatevers could be visit Cheryl.

I suddenly felt empty again. I really hate eating alone.

Connections to others…

For some time now I have focused all my energy on Cheryl and her needs. It is time to reconnect with other friends and acquaintances and lament the lack of a life long friendship with anyone other than my wife.

Perhaps it is time to make new friendships. Have lunch. Drink a beer or two and watch a football game.

Turned inward toward Cheryl for so long…

I was and am still so focused on Cheryl and assuring myself that she is happy and we cared for I was unable to accept the fact that others may be able to do better for her than I could.

I have visited with her each day since she moved in. There is actually nothing for me to do but visit. That is fine but she is off in her own thoughts and delusions most of the day. Once she told me that I needed to take care of myself. (She has little periods of lucidity.)

I cannot always distinguish between watery eyes and simple ego. Both make it hard to see. Ego takes a lot of side stepping to see around. It really blocks the view. Watery eyes distort the view much like looking through a piece of skrim.

What is next?

For now I will devote more time to my part time activity at Mason. There are many things that I want to make sure work correctly for the red level control activities.

I want to write about our experiences more. I may back away from my blog for a bit. Writing about Cheryl and her affect on my heart is still too much. It gives me watery eyes.

I want to set up a work area in my little office space. I have always been interested in electronic things and gadgets. I need to set up a space to do those things – whatever they are.

Today I made bread. Baking is a hobby. I will have to be careful since I am the only one to eat anything I bake. Perhaps I can find others to give my baking to and make a new connection.

Carpe Diem is a motto I need to apply to myself.

Mundane

It is hard to describe, for me anyway, how uninterested I am in doing the boring everyday tasks to keep our household running. Typically I write about our life and Cheryl’s symptomatic display of different nuances. A day or so ago I was a little down in the morning and I started these notes while I was lining up in my mind what I needed to accomplish for the day. I did not want to do any of it but it was either I do it or it does not happen.

This morning while I was thinking about it some more and helping Cheryl to get dressed, I got a Messenger-message from Cheryl Hughes asking how was I doing? (I sort of poured my heart out to her a week or so back when I was worried about some new behaviors Cheryl was presenting. Today she checked up on me.

I responded, — Not too bad. Cheryl slept mostly overnight. She got up once and told a long story about a play she was in as a child called “My Fair Lady’. I know the play. I had not heard the story about her and a couple of her siblings being in it. I helped her to the toilet and we wobbled back to bed. Sometimes she has funny and vibrant dreams that makes her talk and occasionally she wakes. And sometimes I become part of her dream(ing). I am looking forward to the day that her room is ready at the memory care section of Bridgeway Pointe near me. Between my generous sister and myself I think we have the financial resources figured out. My Roman Catholic church upbringing hovers around in the background and tells me I should feel guilty about that. It has taken me a long time and a lot of blog words to convince myself that it is best for both of us. It will happen in the next couple of weeks. (It’s saddening that the previous occupant is now in heaven.) This week we saw the nurse-practitioner who works with her MDS neurologist. Cheryl’s weight is down to 110#. She has lost 24# since the NP weighed her in March. She sleeps more. Today I crushed her morning meds into applesauce because she told me she does not like the pudding that I have been using. I have been crushing her pills for a couple of weeks now. Today I am fine and you are helping me to gather my thoughts about the mundane day to day tasks associated with living. Why do those seem overwhelming on some days and on other days not?

It seems as though time just drags. And all of these activities: laundry, cleaning, cooking, filing, checking, shopping for supplies and other little day to day things are just there to give me another thing to do while caring for Cheryl.

These are mundane but necessary. These are not my whole existence. It sucks to believe that this is the reason I am here. Let me whine a little. I write this for me.

Filing

I have never been a good filer. Librarians are good at this and finding things back. I am not. Frankly it is a scary task that I ignore for too long and then it is overwhelming. Categories – that has to be decided first and it has to be more specific than “stuff” or “stuff to-be-saved”. Later on more anxiety creeps in as one must decide “how long to keep the stuff?” Why is there no manual?

It is just history anyway. Only the IRS can ding you into giving up your records of stuff.

Many folks have a hobby of scrap booking. I have several note books of scraps of my journaling along through life. Does that count? I have not given them the pitch nor have I organized them in any fashion. They merely sit upon my desk in full view of the monitor.

In a previous life our purchasing department had a wonderful clerk who filed all invoices by date of purchase order and then alphabetically by vendor. Once a quarter she would empty the drawers and scan them electronically into files saved in the same order in a database. It made my life easier as an engineer. I could easily find the PO # and from that I could find the vendor and warranty information. A much better system than my “root through the drawer” technique I have now. Life needs a database.

Checking

I have written about this before and I consider this to be a great accomplishment. Early on I decided that it was unnecessary to maintain Cheryl’s shoe-box method. My files are all electronic. The absolute first thing I did was to find a piece of software to maintain my checkbook separate from the bank’s system so that I could check them and my spending.

Categories rose its ugly head early as I had to decide what I wanted to call various expenses and income streams. (Just in case the IRS decided to ding me.) I got through it. Why am I unable to do the same with a drawer full of paper. Maybe because the system I learned from Mom was put everything into an envelope called “Paid Bills” date it and put it in the drawer? There might also be coupons from J C Penny in there too.

Cooking

I actually like to cook. Generally I like my cooking. I also like to experiment with things. Sometimes the disasters are not edible. When I am cooking for Cheryl and me I do not experiment. She eats less and less these days. I have no desire to have her feel bad about not eating what I have prepared. It is harder and harder to figure out what she might eat at any one time. Breakfast was usually safe. That is no longer true.

Laundry

I do laundry almost every day. It is usually a mixed load of towels, underwear, shirts and pants. Cheryl is a pack rat when It comes to old used Kleenex tissues. She blows her nose and then puts it away in her pocket. I have become pretty adept at discovering where and in which pocket she is hiding the Kleenex. She only has two pair of pajama bottoms that have pockets. I am onto those odd pants and check them first before they hit the basket.

Today a new crisis has arisen. Who would think that a corn muffin would retain its shape through the entire hour and seventeen minutes of the washing machine cycle. I am pretty sure it is no longer edible and some of it did fall apart so now it is all over the inside of the washer. Sticky. It was folded up into the dish towel I used as a place mat the other day. (UPDATE – if you let the washer air out for a couple hours the sticky loses its tactile strength and the muffin parts can be sucked up with a dust buster or other suitable small vacuum.)

Every day is a learning experience.

I outsource the cleaning duties to my niece.

I actually like shopping for supplies either online or in the store. If I have to take Cheryl with me I cannot spend as much time shopping but it is still an enjoyable experience. And she gets out and feels like she is helping. I am disappointed that Boxed Up has gone out of business. Amazon is a big help as is Kroger’s.

Carpe Diem.

Time for a Change

One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.

The Devil Wears Prada

It is a great movie about work/life balance. Meryl Streep, Anne Hathaway, Emily Blunt, Simon Baker, Stanley Tucci and others portray an exciting and treacherous existence in the environment of high fashion. Along the lines of Pretty Woman, Nigel (Stanley Tucci) helps Andy (Anne Hathaway) to get her act together and become indispensable to Miranda (Meryl Streep) the head of the magazine called Runway. Ultimately Andy realizes the life is not for her after she realizes how duplicitous Miranda is following an episode in which Andy has placed all of her loyalty and assumes a friendship that does not exist between the two women. She pitches her pager into a fountain in Paris and walks away.

That movie appeared on VH1 the other night as Cheryl and I were winding down in the evening. I have watched it several times before. It is very well done. And now it occurs to me that my working career was over in time to allow me to devote myself to caring for Cheryl. I like to watch movies and Cheryl and I have been doing that more in the evening. She seems to enjoy sitting quietly and watching while also looking at a magazine or messing with the Frameo that no longer receives pictures for some mysterious reason.

The storyline of movie has to be slow moving and serious and tell a story. The superfluous and loud comic book movies that seem to be popular do not interest her and they are hard to follow. I find them to be the same.

She is completely wrapped up in 80 For Bradley because she likes the four actresses involved in the story. I am constantly hunting for another like it to capture her interest. (We have watched it many times.) I am much too familiar with “80 For Brady”.

Last evening I found an old Tom Hanks movie “Big” was alive and well on MGM+ on demand. We watched that. A cute little story with a very young Tom Hanks. Cheryl sat and watched it all the way through. She sorted some of the Kleenex in the box next to her and lined the tissues up with the old CET Connect magazine that she was looking through while also half watching the movie. We talked on and off as her mind wove the movie story line into her memories of childhood. In all it was a calm and pleasant evening and she ran out of gas about 10:30 PM.

Perfect! She got to see the weather report so that she could forget it today. Winter is coming and so is Friday the first of September.

Carpe Diem.

Quiet Mornings

I treasure the early morning these days as Cheryl’s disease destroys her mind.

Last evening – pizza Tuesday – I watched her interact or not with the conversation around the table. Reminiscent of family gatherings when she and her family was younger, there was laughter and loud talk, multiple conversations and talk of upcoming travel and other events. She seemed overwhelmed and at the same time comforted. It was like old times.

Her conversation was confused when we returned home. What time is Nancy coming to pick me up? Will Jan be with her later? I couldn’t hear what Dan was saying. When we have the next family reunion… Her chatter goes on and on. Dan was not there and Jan has passed from this life.

I mull over her conversation in my mind and wonder what if any of it she will remember. At about 1 am she awakened and wanted to go get the cookies out of the oven. I somehow convinced her that she was probably dreaming and we could make cookies tomorrow. After using the toilet we returned to bed and eventual sleep.

In the morning these days I awaken about 7 am and leave Cheryl to sleep undisturbed until 9:30 or so.

It is peaceful. I hear her gently snoring in the bedroom as I read and enjoy some coffee. Or write these little stories.

Carpe Diem.

The Day You Are Born and The Day You find out Why

The two most important days in your life are these two days.

I was watching a piece on the Sunday morning news magazine about a man who studies burrowing owls out west. He made the comment that I used for the title.

Makes one think. I have been thinking about it all day.

I have written many times before that I think my purpose for existing is to take care of Cheryl. I imagine that thought is prevalent in any long marriage relationship. We are partners. These days she needs a little more help than she did a year ago.

Many years ago I was the one who needed a little more help than I needed a year previous.

It is a partnership.

Carpe Diem.

Pieces of a Life

Cheryl has in her office files a phenomenal amount of random keepings of the pieces of her life and ours together. In her current state of Parkinson she will look through, take out, put back and reorganize these as she sees fit on certain days.

Pieces can come out of the office and land on the dinning room table for perusal and examination. A few days ago a real estate listing for our previous house appeared on the table papercliped to a receipt for home owners insurance for the first month that we lived there in 1980. If only I had been more interested in preserving the history of our small family I might be able to help her with discussions that begin “remember when… ?” I am disappointed in myself when I cannot help her. Much of that, for me, is lost in a fog of work, kids, school events, soccer games, parental worry, ( et al. ) none of which was collected in my memory with great detail.

I was adult then. Why can I not recall details like she can even through the mist of Parkinson? – although she has lost other memories.

Yesterday we went on one of our trips to a new place for lunch. She seemed to be doing well mentally and physically.

Tuesday we visited with her neurologist (MDS) which meant that Monday night through Tuesday morning she slept little. She was anxious to not miss the appointment. The rest of Tuesday and much of Wednesday was used up with recovery from lack of sleep, showtime for the NP, meds adjustments, pizza Tuesday with extra participants and simply mental fatigue.

These days her mind seems to have focused on Easter, so, much of our luncheon conversation centered on hard-boiled eggs, jellybeans, artificial grass and other items associated with Easter and Easter egg hunts. She ate her usual BLT and I had another sandwich with fires. We shared the fries. The Mason Grill was one of my favorite lunch places when I worked in my other career as engineer and Mr. Industrial Fixit guy. She remarked as we ate that she used to bring her Mom to this place and her Mom liked it. She reminisced about her mother and taking her to lunch when her mom was in assisted living.

Last evening she went to bed at the normal time and got up a few minutes later because her mind was racing around Easter services at our parish. She is unwilling to accept my premise that I will not let her miss anything important. I tell her this often. (In the background she recognizes that presence at church gatherings is not a high priority for me.) She sat at the dinning room table which has lately become her center of operations and read the church bulletin. She was very still staring at the bulletin for December 22, 2022. (I imagine inside her head her brain was struggling with Christmas : Easter : Christmas : Easter in a parkie way.) Words, dates and times lose their meaning in the evening.

I read my book for awhile longer and we went to bed at 11:15 or so.

Today I could not arouse her until 10AM. She was in the same position that she started in at 11:15 the previous night.

Another day passed.

Carpe Diem

More Food Therapy

The trips to restaurants continue.

On Wednesday March first which is the first day of Spring in my mind and always will be, we went to Ruth’s Parkside Cafe.

At 2PM in the afternoon there is little activity. There were a couple other gray hairs there enjoying the nice weather. The weather has been pretty mild this winter. There is a line in the “Bob hearts Abishola” show on CBS where Bob blames global warming on Al Gore because before him we were just enjoying the really mild winters in Detroit. It makes me laugh but I kind of agree.

The daffodils in the back are in full bloom. They are early this year.

Cheryl had a BLT bagel. I had a red bean burrito. The Cafe has an eclectic menu. For dessert the waitress was apologetic because they were out of pie so I selected gooey butter cake and two forks. I have linked a recipe that I found for this delightful dessert. It was the highlight of our day. Cheryl talked about the cake all the way home.

Carpe the restaurant Diem.