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.

Bittersweet

THOUGHT FOR TODAY: The bitterest tears shed over graves are for words left unsaid and deeds left undone. -Harriet Beecher Stowe

This TFT came via Anu Arg’s newsletter to me this morning and when I read it two thoughts occurred to me. The first observation is yes but more importantly talk to the people you care most about and listen to them. The second observation is that I have been getting Anu’s newsletter since he started it in college about 1994-ish. Long ago and several email servers back. He and I share a love of words and their meaning both old and new. Today’s word is chirk. An old one that means cheerfulness. (Such a contrast to the TFT)

The Last Day

Today is our last day at the beach in Florida. Is it bittersweet? Tomorrow morning we will return home to our regular daily life (sweet). Am I reluctant to leave this Florida beach (bitter)? No I am not. It was/is however a nice change of pace.

Florida is hot. The humid air sticks to you like Luke Skywalker does to Mark Hamel. Fine white sand is everywhere. Tile floors although easy to maintain feel like a NHL practice rink just before the Zamboni comes out to a parkie unsteady on her feet. Those are a couple of the nuances that did not dissuade us from taking the opportunity to come here with Anna’s family. The experience was sweet. Going home will be sweet as well. No bitterness here.

Cheryl made it through all of the little inconveniences that come with being away from home and slightly off schedule for several days. Her schedule is very different from the rest of us and especially me. I suppose that I should be more cognizant of that but I am not. I am always hopeful that her disease interlaced with dementia will cure itself and we can move on with our life, run around and travel, drink fine wine, keep a schedule, make love again, just simply be. And that makes me forget where she is and where we are. Alas.

Red flag day

There is only sweetness coming when we get home. This vacation adventure with our daughter’s family has been hard on Cheryl but she does not seem to know it. She only knows that I am angry when she is doing something different than I am trying to get her to do. The page I have here about Dementia alludes to a lot of those little daily frustrations that I have observed. I should read it more often. Daily, perhaps?

… talk to the people you care most about and listen to them. Even when they are suffering with dementia and memory loss, she is still in there. Thanks, Anu. I often forget about that. The bitter can overwhelm the sweetness.

Carpe Diem.

Make a List

Cheryl makes many lists. Early on when she was still working and Parkinson was not a friend, she made TODO lists for work, school activities and whatever was coming. These days with Sam’s disease (Samuel Parkinson) such a big part of our lives making a list is more nuanced. The next day one must remember what the list is about.

In May two of the grandchildren marked significant events in their education. One matriculated from university and will begin contriting to the business world after this family vacation. And one graduated from high school and has her sights set on university in the fall. Cheryl made a list to mark both events. We were only able to attend one of the graduations but both celebrations. The list worked but I had to remind her what her notes meant.

Vacation view

In another part of the family, preparation is happening for a family reunion style gathering with no funeral attached. Cheryl wants to be very involved although her organizational skills are mostly gone. Her head however is jumbled with ideas.

“I need to make a list!”, says she.

“Try to relax and enjoy the beach.”, he replied.

“I will after I make a list.”

Sam this disease of yours is so much more than we had hoped for in our lives. (sarcasm)

CARPE DIEM (dammit)

Baseball Hotdogs and Humidity

Tonight it is the Blue Wahoos of Pensacola versus the Biscuits of Montgomery Alabama. Pensacola has a minor league baseball team and both Max and Eric are huge baseball fans so we thought it would be fun to go. Tickets were found and we are off. A trip to the pro shop netted a really fine Florida baseball hat.

Real Florida

The team colors are navy and gray. The Biscuits have almost the same colors which makes it a bit confusing from the stands.

Whoopadiddee

It was a great time although Cheryl ran out of gas at the bottom of the seventh inning with the score tied 3 all.

Carpe Diem.