muses

Ennui (un-WEE)

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Ennui is a feeling of listlessness and dissatisfaction arising from a lack of occupation or excitement according to the Oxford entry that pops up when one pokes this word into Google. I have several dictionaries in print form. They are left over from my high school and college days. My copy of the American Heritage Dictionary (copyright 1971) defines it as a feeling of listlessness and dissatisfaction arising from a lack of interest (boredom). It is a small word that conveys a big emotion.

This word was part of the Quordle this morning. I did not get it. It is not part of my regular vocabulary. It is adopted into the English language from the French. The French have a lot of good words that are adopted into English. Altruism or the root of that word is another. Entrepreneur is another.

Words are a fascination for me. I think this word, ennui, is an excellent description of how and what I feel emotionally when I get home from visiting Cheryl at Bridgeway Pointe.

Moving forward from this point I will strive to become more engaged in life around me. Look for things to stimulate my interest. Succumb to various fascinations that I have about the world. Immerse myself in new vistas of my environment.

These last ideas are antonyms to ennui. Introspection is useful. Self-absorption is not. Perhaps I have been too self-absorbed to understand and accept emotional help from those around me.

I will meditate about that today. My son has invited me for dinner.

Carpe Diem.

Gamache (Louise Penny) and Croissants

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“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.

Not Too Negative About It

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As we move down the road of Cheryl in a special place that can take care of her all day long every day, it gets easier for me to leave her. I am assured that she is getting the best care for her at this time.

The past few weeks when she was still home and it was all me, I started feeling anxious and upset with her lack of motivation to help with her own well being. I knew that her disease was getting in the way more. I was frustrated with her lack of cooperation with me with caring for her.

I was perhaps stepping on the last little bit of control that she had over events in our life. My whole waking day was consumed with her. I did not mind that but looking back, from her perspective, I was overwhelming, helicoptery and just plan annoying. There is a difference between accepting help from someone and having unwanted help thrust upon you. I was drifting into the thrusting arena.

This current situation is different. I can step back and let the aides do it – whatever it may be.

I am a husband again. Making sure has has all she needs to do for herself – whatever it may be.

Carpe (deep sigh) Diem.

Admission Of…

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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.

A New Less Than Better Detergent

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Recently, just because, and because I am in charge of it, I decided to change laundry detergents. For those of you non-Parkinson households that do three loads of laundry or less a week this mostly empty container will last more than four months (4+mois).

When we went to Florida last June with our daughter’s family I took along a quart or so of the liquid detergent that I have been using for some time. I set up a subscription on Amazon which is handy until you become overwhelmed with that product. I have since cancelled all my subscriptions to products and suffer through the occasional absence of it when I need it.

I noticed that My daughter brought along and had parceled out portions of dry detergent. I asked if she liked that better and she replied it was about the same but she had had a front loader and the liquid seemed to goo up the door seal so she switched and never looked back. (I think women get better laundry training but that may just be my male stupidness about laundry and women talking.)

The next time I needed detergent I looked for powder. I did not know what I was doing. I bought tide pods with the child proof cap. Sadly it works worse than my liquid. I will not purchase it again. In fact I may not use any Procter & Gamble products for awhile until I get over my disappointment. The blue stains in this image are from the pod itself. The wash cloth is supposed to be white (cream). I should have left the child proof cap on.

The good news is that if the towels are washed a second time with the same substance the stains seem to come out. I have several. I wash towels in HOT water. My washer shouts hot out to me. This is perhaps a clue to correct use of these pods. Maybe there is only enough for two months if cold water is used instead of HOT.

Instructions just say toss it into the bottom of the washer and add the clothes. The t-shirt that landed onto the pod the first time I used pods had much of the pod goo stuck to it after the wash. I thought it to be a fluke because men do not get detergent and laundry training. Alas, I am incorrect in that perception.

Amazon will bring dry detergent to my door. I do not have to stalk it down in Kroger or Walmart. I can even get it in sheet form so that I can mistakenly put it in the dryer.

Cheryl thinks her idiopathic Parkinson’s disease stems from growing up less that a mile from the P&G soap plant in St. Bernard Ohio. Chemistry is complicated.

Carpe Diem.

Make It Happen

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You can make an excuse or make something happen.

An inspirational thought that one of the newsies said on the TV this morning. The truth is that some days one simply wants to sit and recharge and be left alone. Parkinson and associated dementia does not allow care partners to be in that space except during short snippets of time during the day. Parkinson care is relentless. Find that special time for yourself.

My favorite time is from 7:30 to 9:30 or so in the morning. These days Cheryl rarely wakes before 9:30. This time is special. I get coffee, poke at the news, poke at this blog, wordle, quordle, octowordle or simply read. During the summer months I did chair yoga on the back patio and enjoyed the sunrise. Quiet bliss.

Make something happen for you today.

Carpe Diem.

Mundane

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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.

Life is Relentless

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There are so many things that cannot be ignored.

  • laundry
  • eating
  • cleaning
  • care giving
  • personal hygiene
  • taxes
  • utility bills
  • car repairs
  • joy and goodwill of others
  • entertainment
  • peaceful, restful sleep
  • health and healthcare
  • good coffee
  • visits with friends
  • learning to cook
  • how to tighten screws
  • learning new things every day
  • building maintenance and painting
  • love

There are many things that can be ignored.

  • political opinion
  • opinions of others about anything
  • judgmental people
  • messy desks
  • Facebook, X and other social media
  • Advertising and ads for drugs
  • Hurricanes in Ohio

Carpe Diem.

Longing for a Life

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Some days when I look at family pictures I find myself longing for a different life. I long for a life without Parkinson. Often it is a deep deep longing on those days when Cheryl is struggling and I understand she is struggling and I have no ability to help without making her feel helpless. Her dementia pattern seems to inhibit her from asking for any assistance or realizing that she needs assistance whether it is me holding her up so that she can steady herself or simply handing her a tissue to blow her nose or blot her mouth when the drool comes.

Care partners run out of gas too. On most days her memory seems to work for about 10 minutes. ( That may be a sarcastic quip.) On others the loss of the discussion is much shorter than that. On those days I become frustrated which manifests as a louder whiny voice and sounds like anger. It sounds like anger even to me. Cheryl responds with anger and I suddenly remember where her mind is. It is very easy to forget she is still Cheryl. Repetition helps her know what to do or where to go or what she thinks she needs to do. Nevertheless it can be frustrating.

I started writing this short essay a couple days ago when I was feeling down? lost? tired of it all? – defeated? – maybe all of these. Sometimes I just wonder what if?

I doubt that anyone dealing with a partner in life that has a chronic disease wishes for their current existence. Endurance and strength to get through it all is all I ever hope for.

Looking back on the past few years, the covid shutdown, the covid start-back-up, the lifestyle/work style changes to society, the meanness of social media politics, I realize that Cheryl and I do not have it so bad. I wish her dementia to be gone but it is not – except for the few moments early after she awakens. She will look at me with tired eyes and smile. It lifts my heart and soul when that happens.

I still wonder “what if?” I just do not let it control me.

Breathe in, breathe out, move on. — Jimmy Buffet

GULF SHORES, AL – JULY 11: Musician Jimmy Buffett performs onstage at Jimmy Buffett & Friends: Live from the Gulf Coast, a concert presented by CMT at on the beach on July 11, 2010 in Gulf Shores, Alabama. (Photo by Rick Diamond/Getty Images for CMT)

Picture stolen from NPR.

Carpe Diem.