Dance Competition

A small gymnasium with loud music and time to wait, the pre-dance show is boring. I am glad that I have a book. I am writing facetious nonsense.There is no pre-dance show. It is loud music, unnecessarily so, in a small gymnasium.

The girls on all the teams are enthusiastic and passionate about their routines. As a biased grandfather watching these kids perform I think my granddaughter did the best but two concepts interfere with that assessment, familial relationship and ignorance of the judgment criteria. A rubric would be helpful with the latter. There is no help for the former.

I did enjoy the afternoon with my daughter’s family. Earlier in the day Cheryl had been sleeping soundly in her recliner. I sat with her for a time. She did stir when I talked to her. She did not stir when I kissed her cheek. She did not stir when pulled the blanket from beneath her head and covered her with it. She did not stir when I kissed her good-bye and left to have some lunch before the ride to the competition.

Jazz Dance

Cheryl was safe and taken care of. I went to watch the dancers without concerns for her wellbeing. I thought about how she would have liked to have been there. I made a video to show her later.

Cheer

Carpet Diem

Gamache (Louise Penny) and Croissants

“Grief is love with no place to go.” says Armand to a young killer. Amazon Videos has made shows out of several of the stories written by some of my favorite authors.

Watching one of these videos the other night while waiting for my croissants to fluff up for the oven, this quote jumped out at me.

I think I am feeling that these days. Baking can be therapeutic. It is a hobby I have perused for many years. When My sister came to visit a couple weeks ago I made her pot roast one evening. It was great and I used the leftover mashed potatoes in a recipe I have for potato bread. That turned out great. Something I have not tried to do but I now have the time for is croissants and other pastry.

Yesterday I made some croissants. (Why is there two sses in croissant?) Here is a image of my first effort. I took them to Cheryl this morning but she was sleeping.

I also need more practice with the croissants. The other half of the croissant dough is resting in the freezer waiting for me to become inspired to try it again. I think maybe a hotter oven and proof the yeast a bit when I start the dough. The recipe I was following used wet (cake) yeast which I do not have. Perhaps further experimentation with technique. These two out of ten turned out okay – not bad for a first effort.

Holy cow they are rich. There is a whole pound of butter in this recipe.

Carpe 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.

Early Morning

It is not really very early but Cheryl is still sleeping. I have given her her first meds of the day and she lays back down for a bit to let them work on her. I crush her meds and stir them into vanilla pudding, some of that stuff parents put in their kids lunch. This is a new thing and for the past couple mornings it seems to be working.

My trip out west to visit my sister has planted a bug in my mind about tracking down cousins that I have not chatted with since childhood. I do not know where that came from but maybe it has to do with thoughts about family and as families spread connections are lost. Maybe the fact that a couple of my same last name cousins came to visit with Joyce and me in Oregon. Maybe I just do not know.

Nevertheless, I reached out to a couple cousins who are not the same last name. I will see where this goes.

Carpe Diem

Sunflower Day!

It is the day of the Sunflower Rev it UP for Parkinson’s Walk/Run. Cheryl and I thank all who participated, donated and simply is there for Cheryl when she needs help.

It is not too late to donate: https://secure.qgiv.com/event/2sriufpw/ — Cheryl’s team name is SMILE. Because “Mom always told us to smile.” And how can you not smile after saying whoopadidee!

This year was the first year that Cheryl and I did not get up early and head down to the riverfront. Alas as her disease progresses it is not to be on some days. This was one of those. Thanks to all who participated.

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.

Cheryl likes Cookies

Today is Snicker Doodle Day again. These are simple sugar cookies. I added a new twist and put in a teaspoon of almond extract into the cookies dough. (Maybe two tsp. next time) I also added a tablespoon of psyllium husk power for added fiber. Parkies need as much fiber as they can get.

This basic recipe comes from the Betty Crocker Dinner for Two Cookbook. Cheryl has been making these cookies for 50+ years. Her face lights up when I make them.

Carpe Diem.

Home Now

We are home now and I have been thinking about it all. it was a great trip. Are there things I could have planned better? You betcha but we adapted and got through it all.

A few things that I would do differently…

And before I left I updated the Linux Gnome interface and for the first time in a year or so turned that computer completely off. Gnome is broken. That computer operates like an old DEC PDP 11. I have a project to keep me busy for awhile.

Carpe Diem.