When I Visit Cheryl

When I visit Cheryl which happens everyday I notice things. Some of these are after I return home. I am not so concerned about where I put my shoes after I take them off for example. When Cheryl was here with me I was constantly concerned with trip hazards lying about in our condo. Occasionally we would argue about things like doormats and trow rugs, all of which I had removed from the condo over time as her ability to move and walk and balance became worse.

I notice how the staff interacts with the residents. They are generally kind and attentive. They are, I imagine, acutely aware of their own staffing levels.

I notice how the residents interact with the staff. Helen, another resident in the Harbor with Cheryl, is awake and alert and talkative today. Last night the Super Bowl went into overtime. It was not won until just before 11 PM, so, I imagine that several maybe most of the staff sat up and watched it until the end like I did. The difference being that I did not have to get up at 5 AM to make the 6:30 AM staff meeting. Some of the staff have that combination of Monday morning sleepy grumpy going on. I get that. I used to be a service/engineering manager. Mondays were often unnecessarily busy while we picked up all the stuff that fell on the floor over the weekend.

I notice the level of staffing. It is less so on the weekends as one might expect it to be. If there is one single area that I could suggest could be improved it would be weekend staffing. The world in general revolves around folks not working weekends without some sort of extra incentive which is often money. Rewarding altruism and empathetic caring for folks who cannot care for themselves is hard work for the administration and work life balance is strained when the work and life are similar. Conjuring useful rewards for weekend work like appealing to their sense of altruism is probably tough.

I notice the changes when the shift ends. The next group comes in. It is generally a smooth transition.

I hear the little discussions between the staff – what’s important to them.

I also find that if I am not the full time care partner I was when Cheryl was home with me I am able to have opinions about how others do the same task. I wonder about how I might do it differently. I keep those thoughts to myself. Juggling the needs of a dozen people at different stages of Alzheimer’s, Lewy body, Parkinson’s and other forms of dementia is more complicated than I had to deal with at home. My personal dilemma was remaining kind and thoughtful with lack of sleep but a lot of love. Love is sometimes hard to find if you are Mr. Lack-of-sleep-cranky-pants.

All of this wandered though my thoughts today as I visited with Cheryl and sat with her while she dozed in her chair. She was slightly awake but sitting with her eyes closed. She was uninterested in having company. I just held her hand for a bit and it seemed like she relaxed and fell into a nap. I miss her daily company.

Carpe Diem. ( Carpe Somnum when it is time.)

Words, Wordle and Anagrams

An early morning wake-up activity for me is working my way through the Wordle, Quordle and Octordle, although I have little idea how to pronounce the last one. Being non-competitive does not mean that I do not enjoy intrinsic triumphs. I am a fan of crosswords, golf and trivia. All of these can have an externalized competitive setting but primarily these are the player versus the game itself. Nevertheless, words and word games are a fascination to me.

Occasionally working my way through these in the morning sparks other thoughts. An arbitrary word guess – because i am stuck and I have pecked in five letters to discover what my brain thinks about it – will turn into a valid word, often wrong, but valid. Campo was one of those. I am one of those who has several dictionaries and a couple bibles. I tend to look up bible citations and previously unknown words. “Campo” is a grassland plain in South America. (The Spanish and Portuguese got there first so they got to name things, I guess.)

In Octordle the object is to find all eight words in as few guesses as possible. My first two guesses are generally wasted while I hunt for vowels first. Once one of my vowel words showed all green but that was not my lowest score (low scores are best). Another internal fight I have with myself is to focus (or not) on a single word. Sometimes guesses are answers elsewhere. Those are just strategies. Today in one group all five letters where there after my third word entry (first guess). These were “r,a,t,e,h” sort of clumped in a corner grouping. EARTH or HEART are both good guesses here. I picked heart and I was incorrect. An anagram of both words is HATER which was the correct guess.

My brain whorled off into the ether. Heart versus hater. Light versus dark. Without a heart, one cannot live. Without hate not only can one live but life itself is brighter. An anagram is a simple rearrangement of the same letters. Perhaps we need more anagrams in our lives.

Carpe Diem or maybe Carpe Lucem!

I Suppose it is True

One cannot be certain where the day is going when the person you care about most is dealing with Parkinson, memory loss and rapidly developing dementia. I have not spent much time away from Cheryl in my mind lately but Edie’s words made me think.

NEVER REGRET A DAY IN YOUR LIFE: GOOD DAYS GIVE HAPPINESS, BAD DAYS GIVE EXPERIENCE, WORST DAYS GIVE LESSONS, AND BEST DAYS GIVE MEMORIES.

— from Edie Kynard (a friend on Facebook)

The past few days are oddly jumbled up in my head. Yesterday we continued to track down Cheryl’s cousins-that-she-has-not-seen-for-awhile and had lunch. We picked up Lois and in keeping with our plan went to eat in a restaurant we had not been to before. Wild Mike’s it was called. Sort of a cross between a diner and a sports bar. In Cincinnati how you tell that is the place sells boneless chicken wings, real chicken wings, hoagies and hamburgers. It was a good time and we stopped in with Lois for an hour or so and Cheryl went through her family reunion book with Lois.

This afternoon two of Cheryl’s friends came to visit for awhile. I went to the barber for a much needed tune-up. I enjoyed the camaraderie of the barber shop that I have been going to for 50 years or so.

In the evening I made dinner in the oven as rain was predicted and I did not want to grill out in the wet. We ate on the back patio waiting for the rain that never did come. Cheryl pronounced it good and ate most of it. We did not argue. We enjoyed a random conversation about plants and rocks and things in the woodsy area behind our condo. She told me about some kids in the trees that I could not see. I asked her what they were doing. Just hanging there she said.

And today, although it was not best, is a good memory. Tomorrow she said as I helped her to bed – I want to put up the Christmas tree.

Carpe Diem

Changes are So Slow

Today as I encouraged Cheryl to wake up and get out of bed it occurs to me that the changes are very slow. This morning is very different. It is hard to recover from a night of little or no sleep.

Yesterday she was awake very early simply because she had not slept overnight. I was not awake overnight to observe her but I get up two or three times to use the toilet. I long for the days when my bladder could contain my overnight urine output until morning but alas those days are gone. (I have digressed.) Each time I made this trip she was awake and talking to me. As I attempted to fall asleep, she squirmed as she attempted sleep. Each time I woke up she was in a different position. It suffices to say she slept little overnight.

Yesterday she was delusional and hallucinal and those experiences went to talking to her mother, my mother, seeing our two sons around, seeing her deceased sister and our smallest grandchild, Zachary.

Yesterday evening was my regularly scheduled meeting with friends. We formed a stock club many years ago and we enjoy a few beers and talk about various get-rich-quick schemes as well as attempting to discover the next Walmart or Amazon. It is a satisfying evening for me and our son Scott comes over to hang with Mom for a couple hours.

We had a gift for our newest high school graduate so I enticed our son David to stop by and pick it up. As I was texting David and working out the details Cheryl wondered aloud if Scott was bringing Zachary with him. I texted Scott with that request.

Our daughter-in-law brought Zachary over after he had been fed at home. Scott came at the usual time to hang for awhile. And David came by for a few minutes to pick up the gift and chat with Cheryl for a few minutes. I left for my meeting.

She saw them all in reality instead of inside her head.

Afterward she went to bed and although she was awake when I returned from turning off the lights and reading for a bit she fell asleep shortly thereafter.

Today she really had a hard time getting started. I rolled her, she has a new transfer chair, to breakfast after getting her on and back off of the toilet. She ate scrammed eggs, toast, bacon and some orange juice. She has started reading the Wall Street Journal to which I subscribe. (Getting rich quick is still strong in me.) She likes the editorial pages. I rolled her back to the bedroom afterward and now I hear her moving around selecting her clothes for today.

Carpe Diem.

Women’s Restrooms

Women’s restrooms are never handicapped accessible even when you think they are and the provider thinks they are.

The Ladies room at Through the Garden restaurant (which we go to often) is a pretty good one. Cheryl did not get trapped with her walker last night. The door hinges into the restroom and it is nice and wide.

The Silverton Cafe which is a wonderful old pub that we have gone to for decades has a sucky-wucky ladies room. Cheryl got trapped in the stall. A coat-hanger would have been good.

The public restroom on the first floor lobby area south in St. Elizabeth Ft. Thomas has a really swell feature. I has a handicap wave pad that opens the door mechanically when you wave your hand at it. It also has motion sensitive lights which turn on when you shove your walker in but waits a few minutes and turns them off leaving you sitting in an inside room without windows or any other lighting which makes it blacker than the inside of a cow which is also not not nice. Almost a great idea though. Needs a little tweaking.

As we travel the road of parkie dilemmas I have visited a lot of women’s restrooms lately. I am not shy about shouting “doing okay?” through the door and opening the door which usually interferes with the walker coming out. Often you will see me hovering near the ladies room door when we leave the restaurant or pub for the evening. I try to not look creepy.

Most seem to hinge inward but the door is conveniently (for the builder) located in a corner so that you cannot be off to the side with the walker to open the door.

A few designers are thinking here and there. It is sporatic though. Old buildings are the worst. Restrooms do not make any money for pubs. All guys need is a bush.

Carpe the restroom Diem.

How Many Things Change

It occurred to me this morning as I was reaching for the Cheerios that lots of tiny things have changed in our life together. Not all of them are Parkinson changes. All can seem associated with Parkinson. I will stop using the possessive and leave Parkinson by itself.

Starting with Cheerios, Cheryl rarely ate Cheerios until recently. The why of that thought is unknown. It may or may not be a parkinson. Before Cheerios she was a huge fan of Life cereal. So much so that I was buying Life cereal in the four box collection from Boxed Up online. For several months perhaps a year and a half it was Life cereal, some dried cherries on top and orange juice. Then it suddenly switched to Frosted Mini-Wheat cereal but only for a couple weeks. Sticking with the heart healthy ideas I bought some Cheerios for myself on day as I passed through IGA shopping for the other things on my list. They were quickly adopted by Cheryl as a breakfast option. Cheerios is the current choice virtually every morning now.

A Partial List of Changes:

  • cars
  • house
  • travel
  • motivation
  • dementia and support
  • bicycles
  • relationships
  • Morning routine
  • Sleeping routine
  • Sleeping
  • Memory
  • Intimacy
  • Me and tea
  • showering and hygiene
  • keeping track of meds
  • adjusting meds
  • Exercise
  • Daily chore responsibility
  • Plumbing
  • handholds around the house
  • Emotional response to songs
  • Financial maintenance
  • Falling and fainting
  • Writing
  • and on and on…

As these changes occurred in our life together I did not take notice of them, I merely rolled with it at the time. I admit to being initially annoyed and sad to see something change away from what it was. Old people like to keep things as they are. The past tense is disappointing but the Beatles broke up in 1970. People move on.

Parkinson symptoms are treated with powerful mind altering chemicals. It is the doctor’s call as to what will help. It is the care partner’s call to observe and listen and respect and help with those drugs. The doctor is global and strategic. Day to day caring is tactical, down-to-earth and immediate.

Carpe tactical Diem.

NO

In a past episode of “Ghosts” the young woman protagonist uses the term “maybe” instead of a direct “no.” Cheryl says, “I’ll think about it.” Reading the care giver’s guide to the galaxy book which is a part of the class I am attending to learn some things the communications chapter discusses saying “no.” It talks about the implications of negativity which go along with saying no. I have noticed that most times people cannot say no with out offering some explanation to lessen the blow of the no.

It is much harder with a dementia patient. The no may be a greater blow than one can imagine. But sometimes it is very important to the care partner to express “NO” and then explain the the care receiver why no is important this time and then discuss alternatives that may sound like “we’ll see.”

We will see and keep working on it.

Carpe Diem.

Her favorite show was Big Bang Theory

… and then Young Sheldon for a while but the young Sheldon is a bit more melodramatic and less fun and funny. She has lost interest it appears to me.

I, however, have become attracted to the rest of the characters. I am watching how the child actors age; a midlife crisis development in the family; Memah (grandmother) deals with life and widowhood; how life in Texas is portrayed. Sheldon’s role is reduced to narrator. He has become a semicolon between scenes. I think his older brother Georgie is getting ready to branch out and chase his entrepreneurial instincts and fly to the world of small business.

As the last season ended George (father) is struggling in his marriage and is feeling a little put out by Mary (mother) who is certain only she can take care of the family. He winds up going to the local bar to have a beer or two and enjoy the company of others rather than stay in a bickering duel with Mary that he is certain lose. He meets up with his newly divorced neighbor and they chat about old times and other things about their lives. They both whine a little to each other. George has some pain in his chest which they perceive as a heart attack.

The beginning of the new season episode tells us that it is just gas. Everyone is relieved. George and Brenda (neighbor) spend some time working through their (perceived) guilt about talking in the bar. George with his newly divorced neighbor is searching for meaning in life. Brenda is simply looking for companionship after her marriage fell apart. They finally sit at her kitchen table and she suggests that they both just wanted to feel special for a bit. A very succinct conclusion to the show.

All of us have a need to feel special for a bit.

Folks with a chronic condition that makes everyday living difficult want to feel special for a bit but separate from their condition. The condition is not them.

Carpe Diem!

Purses, Zippers, Pockets

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.