Caregiver diversions

So What Should I Do?

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I really enjoy a good detective murder mystery. When I first started reading this genre I would try early on to uncover the “doer”. I do not do that anymore. I just go with the author’s flow and let him or her tell the story as they want me to hear it. Mom used to cheat and read forty or 50 pages and then jump to the back of the book and discover the miscreant. That works for really wordy authors like Stephen King – who does not write detective murder mysteries but I like his stories also – sometimes but often one misses the word craft of the author. It is tough to start with a nugget of an idea and turn it into a novel. You will miss word gems created by the author and any new vocabulary.

Recently I rediscovered John Sandford (John Cloud) and his “prey” novels with Lucas Davenport. I have read many. They are always entertaining to me. A week or so back I thought, you know Paul, you have not read his books through from the beginning to now. He started writing in the mid 1990’s so there is a lot of ground to cover.

I started reading his stories electronically on my tablet all the way to “Night Prey”. It is out on my electronic library so I turned to the print library. It is out there too. (damn) Read faster people!

I usually read two or three things in parallel and I am now. A novel, perhaps some journalistic book and maybe something technical are on my reading list at the same time. I will be patient but not for long. It is my winter project for now. Read faster people. (Even the big print version is out.)

The audio version is available. Those are usually read too slow for me and sometimes I say to myself – did I miss something? – and I go back to re-read a few pages. And occasionally I find a word that I am unsure of its meaning even though I can discover it from the text, so, I look it up in one of my Webster’s. This by the way is the feature I like most about reading on my little tablet. I can touch the word and Merriam will awaken and tell me its definition. (sweet) Cannot do those with an audio book.

Read faster people! Although the “Family Roe” is well written and an interestingly sad story, I want to see how Lucas grows and develops. He just met the love of his life, Weather and she just saved his life. Let’s go, people.

Carpe Diem

Traveling Where?

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This past year I ventured farther from home than usual. Google keeps track of where I am as long as my phone is on and I allow it to do so. I do not mind the “keeping track”. God does it. Why not Google?

This is the time of year when folks send out cards to their friends and family. Often these cards are family pictures or collections of pictures to tell the story of their family. They have grown. The children have grown. They visited various places. They had a good time there. I enjoy these types of cards and so does Cheryl.

I think I will take this google map of were I have been the past year and add pictures of those places to tell the story. Stay tuned.

Carpe Diem.

Tiny Things Change from Day to Day

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There are some really minute things that change with Parkinson’s disease. Many are really small and when those show up my immediate thought is, when did that become different.

Wash cloths in the shower, for example, have changed in number. In our old house after the kiddos moved out and started their lives and families, after we became empty nesters, we each had our own bathroom that we used. Upstairs is for her. Downstairs is for him and visitors. (How come I had to share my bathroom? — different question.)

There are some funny aspects to this. Cheryl has her mother’s knees and they were starting to give out along life’s way. The doctor told her that if you have a choice of stairs or the elevator pick the elevator or escalator. No kneeling in church either. Cheryl told the doctor, our bedroom is upstairs. He replied when you come down for the day stay down.

Over time I moved the guest bedroom upstairs to what was the boys bedroom. The guest bedroom downstairs I converted into her office and sewing room. I took over her old office area as mine upstairs adjacent to the upstairs bathroom far from the coffee but what the heck I didn’t used to have an office. I was a basement guy. In my male mind all was well. But her bathroom was upstairs. (smiley face) And although she spent a lot of time in her office sewing room she would go upstairs to the bathroom when that need arose. She rarely used the downstairs bathroom.

Cheryl and I have been married for more than fifty years and although I cannot point to the specific date when we started some particular habit, we started it somewhere in our lives. Thinking back we have known each other longer and I have lived with her longer than anyone else in our sphere and that includes her family and mine. A lot of habits and some traditions have been started and rejected along the way. Several years ago we mutually decided that it was time for a smaller flatter place. Between her knees and the parkieness our life was changing. We bought a condominium all on the same level. It has two bathrooms but the one next to the big bedroom has a swell walk-in shower. She hung one washcloth for her and one for me in the shower area. Done. We are moved in.

Why am I stuck on washcloths? I really do not know but there it is this morning while I am taking my shower; there are now three washcloths hanging in the shower. When did that change?

I get the red one.

Sometimes I want to become angry. Sometimes I want to laugh. Sometimes I want to cry.

Parkinson’s disease and PD with the added feature of Lewy body dementia is puzzling and it consumes a lot of hours for the care partner.

The washcloth thing is merely one of many.

Carpe Diem.

Special – or not – Spaghetti Sauce

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Every once in a while I get creative with the refrigerator contents.  Last evening I had some frozen butternut squash I had cut up and cubed a couple days previous.  Usually I roast this in a 400 degree oven with a little salt and pepper and olive oil for about  15-20 minutes but I decided to try something different.

I had also a 1/2 pound of ground beef. And I had a half jar of Barillo (12oz.) tomato basil sauce.  I took about a cup of butternut squash and simmered it in about a cup of water for about 15 minutes on top of the range.

When it was soft I poured off the water and smashed it into a pulp and dumped in the Barillo sauce. When I recover unused commercial sauce like this I often put a couple tablespoons of water in the jar to rinse the bottom, I poured this in as well. I added a pinch to a quarter teaspoon of red pepper.

I sauteed the ground beef with a little olive oil and rinsed it in a colander when it was browned. This removed some of the grease left from the saute. Cheryl has a hard time with any sort of greasy food. She likes it but about an hour later it gives her a lot of indigestion.

I added this to the sauce and let it simmer gently with the lid on for about 20 minutes.

While that was happening I got the water going for 4 ounces of spaghetti. When that was ready I plated it up.

I sprinkled a bit of grated Parmesan cheese on top.

She pronounced it good.

The picture at the top is not mine. It is from fitmencook.org. How cool is that? Perhaps I am a closet fit man. (smiley face here)

Carpe Diem.

Let’s Not be sad During Holidays

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In a conversation tonight at dinner, Cheryl became very sad and longing for the past as we started to talk about the holidays coming up.  When we were younger we had this huge five bedroom house.  Everyone was welcome.  My mother and father were still alive.  Cheryl’s mother and her gentleman friend, Bob were still alive.  Dinners and holidays were loud and raucous with kids coming and going.  There was beer and wine.  My mother enjoyed gin and tonic.  I still order that in a restaurant as a tribute to Mom.  We longed for those days.  Cheryl became sad in remembrance of those times.

I suppose in a way I did too.

The only constant in life is change.  I do not remember if that comes from the Hindu or Buddhist religion but everything is in motion.  Embrace the change.  Make new memories.

If you let it over take you nostalgia can distract you from the present in much the same way that anxiety about the future does.  Most of us have little prescience of what comes next, so anxiety and worry is unwarranted.  Our personal history has been lived.  Focus on the now.

Many years ago I had a conversation with my father.   We had traveled to a local state park near a lake.  The idea was to let the kids run around and have a picnic.  We were at the little beach area alongside of the lake.  The kids were running around having a good time and after a few ounces of refreshments I needed the facilities as did Dad.  While standing and staring at the wall inside, my dad remarked that he wished he was a young man again.  I think he may have said, “I wish I was eighteen again.”  He was making reference to the young girls in their bikinis and his nostalgic memory of youth. 

I responded with, “Me, too! But probably for a different reason than you are thinking.”

“When I was eighteen I was still living in your house on your dime.  You used to give me money for gas.”, I told him. 

“Now I have a wife and three kids to take care of and support. I don’t regret any of that but it was a lot easier when you were taking care of me.” I said.

That is not the exact conversation but merely how I remember it. Dad smiled and remarked that he was not thinking about it that way. Everyone’s nostalgia is different. I had many life conversations with Dad.

Looking back occasionally gives perspective. I realized then that, although ten or fifteen years earlier my life was easier from my perspective, I would not change a thing that was happening now. My now was a wonderful wife, great kids, a wonderful family and a great outing with my children’s grandparents.

It is much the same now. Parkinson’s disease takes a lot of time and although I wish it was not. It is. I am constantly provided with opportunities to be a better husband. Do I want those opportunities? No, I do not but that does not change the fact that with a little bit of attitude change, a little change in perspective I am better at life with my care partner. This is a mutual effort.

So let’s not linger in nostalgic times. They were good times. They are not now times. They are past.

Carpe Diem

Her favorite show was Big Bang Theory

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… 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!

Best Descriptors for Insomnia

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Ironical

  • Peaceful as a truck driver on amphetamines
  • Restful as an old man with the bladder storage capacity of a peanut
  • Satisfying as a rock star on speed
  • Quiet as Michael Jackson after practice for a concert
  • As restful as an hour after sixty-four ounces of colonoscopy prep
  • Rejuvenating. Much like being chased by a mother bear after you’ve noticed her cub behind you on the Appalachian trail.
  • Adrenalin rush leads to melatonin misfire

Last night was a particularly unsatisfactory overnight experience. It seemed as though Cheryl did not sleep at all nor did I. I tried a new idea out on myself. Instead of becoming angry with her disease, her insomnia and myself for getting angry I laid alongside of her thinking of funny ironical and satirical ways to describe insomnia. It is hard to be creative at 2AM. I kept falling asleep. When I awakened again, perhaps an hour later, feeling a little guilty for falling asleep, I was worried that today would be especially bad.

Yesterday we had dinner with my cousin and his wife visiting from the west coast. It was a pleasant afternoon and evening full of catching up and conversation. Cheryl seemed to enjoy it even though her evening meds attacked her and she sought refuge on a couch in the back office of my cousin-in-law’s condo. I think that embarrassed her even though we assured her that she should not be.

On the way home she expressed how much she enjoyed herself. When we got home she hunted for comfy clothes and we watched a favorite show together. She went to bed at her normal time around 10PM and I sat up to read for awhile. When I went to bed later she was still awake but that is not unusual. She is often awake for a bit after she lays down. Sometimes it is a long bit. Last night it seemed to be all night.

Early this morning she told me that the kids needed breakfast. I think I raised my voice when I told her that there were no kids living with us but she had left the bedroom. I am sticking with that excuse.

Someone said that you can sleep when you are dead. What a morbid thought that is. So, I began my thought experiment. Some of them I remembered this morning.

Haiku: Adrenalin rush; Sleep is disturbingly sad; Melatonin fail. 🙂

Perhaps I will get my sonnet maker out and think about that for awhile. Or I could read a book and nap later today.

Carpe diem or carpe nox. Carpe whatever you want.

Purses, Zippers, Pockets

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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.

One Positive Thing

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Edie posted this on Facebook. Her husband Tommy and she are further along in their Parkinson journey. She also has a much stronger faith in the Almighty than I do. But like Parkinson’s disease everyone’s faith is different.

From: The Kynard House
Posts, Notes and Parkinson’s

Tommy is with us still.
He rallied for a few days.
He is alert at times.
Family and friends have been stopping by.
Hospice is a blessing.
It does not seem real.

I know the sentences above seem devoid of emotion, but at this point, I’m like a tire that’s “out of round”.
It wobbles.

I’m on auto pilot.
I slip into the guest room to regroup.
I’ve vented when necessary…cried in bursts and then I get up and do what’s necessary.

God is with me and if there’s any sentence that says it all…I’ll say it again. God is with me.

In the very beginning when I joined this group, I asked the question,
“What is the one thing positive that Parkinson’s has caused in your lives?”

No one answered positively. All were negative responses. I couldn’t grasp that! Positive CAN balance the negative. I refuse to let the negative
outweigh the positive.

Because I’m an encourager, and empathic, I will add to my original post, because personal growth is always necessary.

This is what I have learned.
God is still with me. He is my rock even though I don’t take enough time to sit with Him.

As Tommy (my earthly rock and solid foundation) prepares to leave this world…I am addressing my soul, asking God to open my eyes to anything that I have closed them to…to open my eyes so that I can see my way through the maze of emotions.

Yes, Tommy is still with us and God is within me, all around me and beside me.

The positive?
I now fully grasp, “Fill me up, Lord!”

Edie Kynard
My reply

I think that “the one single positive thing” for me is finding the love in our relationship and making me aware of it. Our love for each other has always been there, after 51 years it must be, but this debilitating disease makes it hard to remember what life once was and what it can be. I have learned to do things I never imagined that I would or could. This damnable disease has caused me to find an inner strength I didn’t know was there. It also has shown me that it’s okay to show emotion and not be embarrassed. Godspeed to you both on this phase of the journey. May the road rise to meet each step along the way. God’s love be with you, Edie.

Edie, like me, writes a lot about her journey. Tommy seems to be getting worse as time has gone on and although I do not know them personally, it seems that he is not resisting PD as he once was.

Nor is Cheryl. Last evening her hallucinational behavior was particularly disturbing for me. The hallucination is one that she often has. She sees two little girls. Last night she was very concerned that no one was coming to pick them up. she began to become frantic about that. She was going to go out and look for the parents.

I reached out to my daughter and my sister-in-law. If I could get one of them to call and bump Cheryl out of her virtual world our evening would be better and she would sleep. It was my hope. Anna called her mom.

Later we took a walk and talked about Anna’s phone call. She was very animated about the discussion with our daughter on the phone. Taking her evening meds gave her a little indigestion as often happens. The girls were gone. Indigestion and hallucination seem to be mutually exclusive.

Oh. About love. Sometimes you will go to great lengths to relieve pain or anxiety in someone that you care dearly for. Sometimes adding mild pain (indigestion) relieves other dilemmas. It was unintentional on my part but her gastric distress relieved her other stress.

A couple years ago Cheryl started a support group at our church. She noticed that in addition to herself several other members of our parish had PD this included the pastor. We (I am the Uber) met several time in the small parish chapel. Covid chased everything onto Zoom for awhile. As we all peeked out from behind our masks we started meeting again in person at Parkinson Community Fitness in the evening. Cheryl always has a meeting to organize the meeting the Saturday before. Today she asked me to organize that meeting for her. Slowly, ever so slowly, she is letting go of things that keep her interested in going on.

I did not push back. I think of this as her project. I merely did what she asked because I love her.

Carpe Diem but seize anything that helps.

Emotion is often Close to the Surface

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Cheryl carries her emotions close to the surface. It seems more so lately. When we received this thank you card today from a great-niece, she was very excited to hear from her. Ally thank you for being so considerate of your great Aunt Cheryl. I responded to her.

Dear Ally,

Thank you so much for the thank you note and response to our graduation gift. We wish you well in your new career. Can you tell us a little bit about that? What took you to Austin?

As for your questions, the Covid crisis (I prefer pandemonium) in many ways has passed us by. We were vaccinated in January and February at U. C. Health here in Cincinnati. They made it very easy by creating a drive through clinic in the garage of the building that houses Cheryl’s neurologist. In Cheryl’s case they sent her an email notifying her her upcoming appointment with her neurology group and she should make an appointment to get the vaccine by July – and oh by the way here’s a button to click on to set that up. 🙂 She was fully inoculated with the Pfizer vaccine before the end of January. It took me a few weeks longer because I had to set up being a patient at U. C. Health first and then had to wait for a slot to open up but I got both doses by mid-February.

Parkinson’s disease is great practice for staying isolated. Often Cheryl really does not want to do anything. Sometimes I have to push her to get going. She has an exercise class on both Tuesday and Thursday that is oriented towards Parkinson’s patients.

I do not know how much you know about Parkinson’s but it is more than just the jiggly motion with which you may be familiar. Michael J. Fox and his foundation provides a great deal of information and a great deal of money for research. Unfortunately there is no cure (yet) and the disease itself is degenerative. It affects everyone differently. Cheryl’s mobility is generally good with medication but in her case the disease is affecting her cognition and memory. She used to be a whiz at computer databases but now struggles with opening email. 😦

With your graduation card, I suspect she sent it to your grand mother. Cheryl often mistakes who is living with whom and who belongs to which family. I often have found myself correcting that information but it is a never ending task. It is tricky to keep track of your own stuff and someone else’s stuff too. 🙂

If you are interested I whine a bit and muse about things as they are in my life on my little WordPress blog [ www.adjunctwizard.com]. I have discovered over time that your grandfather and I think a lot alike. I did not realize that until a few months before he passed away. I am glad I was able to visit him before that happened. Sometimes I wish that we had been closer when he was alive.

Cheryl’s sister Janice who also lived in Florida passed away from Covid in August of last year. So, the pandemonium has touched our family closely.

We wish you well in your new life. Keep in touch and stay safe.

Best Regards and Godspeed,

Stay safe and be well Ally. May the road always rise up to meet your feet, May the wind always be at your back. Godspeed, young one.

Carpe Diem.