memories

It is All Hallow’s Eve

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Ghosts and goblins come out during the daytime these days of the covid wind down and the continued concern for small ones who are the ghosts and goblins. We will see no ghosts or goblins unless we go seek them out in their own habitat.

For our own scary feature to today’s activities, Cheryl got up early so I gave her the 7 AM meds at about 6:45 or so and we went back to bed. She got up and dressed at 7:30 while I napped on until 9 AM. (That felt great!) When I came to the kitchen she informed me that she had taken her medicine. She had taken her 10 AM meds at about 8 AM. I need a new system. I think.

It might be a scary day. So far, however, it is not.

Poking around my photos and ones that I could on Facebook has brought back wonderful memories of times before. I cherish them. These pictures are Halloween through the years and my favorite picture of my mom and dad as Raggedy Ann and Andy. (Truman in sunglasses is not Halloween but it is a great picture.)

Carpe Diem and Happy Halloween!

Care Partner

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Recently I learned a new term. Care Partner. I use the term care giver on this blog as I write little stories about our day to day struggles. I think care partner is a better term for what we actually do. Often I care for her. Just as often she cares for me. It is not a one-sided activity. Interestingly enough I poked “care partner” into Google. I am always interested in what sort of images the great alphabet search engine will find. The very first hit on my list is this link to an article about care partner on Parkinsonsdisease.net.

Last evening we attended a gala fund raising event for PCF which is an exercise and social facility that I take Cheryl to three days a week. They had an awards ceremony and passed out what engineers call attaboys. It is nice to be recognized for work and effort for which there is no expectation of reward or recognition.

I was given a “Care Partner ” award. I thought– absolutely, yes. It is better description of what happens. There is no doubt in my mind that Cheryl cares for me as much as I do for her.

Hmmm.

Carpe Diem

Frustration and Anger

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Lately I have been experiencing a bit of what I think of as Caregiver Burnout.

We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.

Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.

I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂

An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.

Over time I have taken over the duties that she used to do in our home.

In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.

It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.

At least we are vaccinated and boosted. The road is pretty long even when not visible.

Carpe Diem!

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.

9/12/2021 — Sunflower Day

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Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.

It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.

Special thanks to Texas for helping out today.

Carpe Diem.

9/11/2001 – Wandering Indiana

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Today is a sad day. Twenty years ago we were at Cliffty Inn in Indiana up the hill from Madison. We were on a spontaneous vacation trip.

The whole world seemed very quiet that day as we made our way to our eventual destination. I realized sometime later that morning that there were no planes in the sky. There were no contrails.

All brought on by a fairly well to do Saudi Arabian who somehow felt slighted by the U.S.A.

Well, Osamba bin Laden, you were evil incarnate. It is so very sad that you did not understand the Quran when you read it.

God is great but you did not understand that idea and believe.

51 Years Today

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Today is our 51st wedding anniversary. I took as many of the kids and grand kids as could make it out to dinner yesterday evening to celebrate. It was a very nice meal. Cheryl told me she was grateful to everyone who was able to come and she had a great time. Later when it was time to go to bed she wished me a happy birthday. She said in all the confusion and celebration she had forgotten to do that. I thanked her.

Several weeks ago in early July she gave me this note. She was listing cards to buy at the time and she realized from her notes that our wedding anniversary was coming up in August. I remember on that evening a few weeks back that she was very proud of herself. Her math was still working. I just smiled and agreed with her and kept this note. I think I will always keep it.

We met 55 years ago on a blind date tomorrow. We were married 51 years ago today. It was as HOT day. It was August in Ohio.

Although life could be better if Cheryl did not have Parkinson’s disease, I would not have missed one day of our life together. Happy Anniversary to us!

Carpe Diem.

Every day is a winding road, enjoy the ride.

Last Night it was Bacall’s Cafe

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Wednesday night dinner out was a favorite place Bacall’s Cafe. She had a half BLT and a salad. I had pot roast, mashed potatoes and vegetables which turned out to be sauteed zucchini. It was a regular night.

Cheryl spent a great deal of the time trying to get her right earring in. She never did. The waitress tried to help but was worried about hurting her ear. Many years ago when she had her ears pierced the incompetent piercer did not get the hole straight through. For many years she was able to make it work. These days her PD fidgety motion makes inserting the post or pin often unsuccessful.

Eventually I convinced her that no one cared and she should put it in her purse and try later. We talked about different things none of which stuck with me. She did not have any odd topics to talk about. It was a dinner conversation that lulled me into forgetting about her PD. We teased each other as old married people do.

I remarked that none of her family came to her family gathering at her cousin’s house. She replied that maybe since they had been at our niece’s wedding the previous weekend they were doing other things. Perhaps she right, as family gatherings go, the clans tend to stick together with not much intermingling.

We saw several old acquaintances at other tables and booths. It was Wednesday afternoon and the old folks were out having dinner and a drink or two. Talking about this and that. She was having a good day for the moment.

When we got home, I settled into my recliner to watch a bit of news and for Nature to come on our local PBS station. She went into her office to look at the clutter and maybe check email. About an hour or so later as I was starting to read my book and tigers of India were saved for now, she showed me some pictures that she thought were of my sister Laura and her family from a trip out west. (POOF) she was off in PD la la land.

The pictures have little to do with Laura although she is in some of them and nothing to do with any trip out west but Joyce and Rob, our family’s only westerners, are in them. The pictures are of two Christmas celebrations twenty-five or so (maybe thirty) years ago.

Oh well, Carpe Diem!

Dan is Coming

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Cheryl particularly looks forward to visiting with family and friends. She also is close with several women from grade school. They refer to themselves as the Clementines. Lately they have been meeting via Zoom because several of them are taking care of folks that have immunodeficiency in some way. Cheryl really misses the face to face interaction they used to have in a restaurant somewhere.

Today her brother Dan brings lunch. They will sit and talk about family things.

A few days ago many of her siblings gathered at a restaurant to celebrate Dan’s birthday. I was there. I refer to myself as Cheryl’s personal Uber driver but lately I pay closer attention so that I can help her remember what was said and who is doing what to whom. It is not a task that I relish. It is what I do.

As a family group, their generation is beginning to die off. The second oldest died last year in the chronavirus pandemic. They seem to talk to each other more about their personal lives. Most of them are very quiet about that. The youngest talks often about what is happening in his life. He is a new grandfather and soon to be again. All of them live locally within an hour drive.

Our two families deal with grief and loss very differently. My sister and I talk on the phone more often than we did when Mom and Dad were still alive but even so, we might go weeks without doing so. Our older brother and the oldest sibling died last Spring. Our core group has been reduced to two. My sister and I are separated by two thousand miles and three time zones.

… And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

from Desiderata by Max Ehrmann

Another favorite thought

Carpe Diem. July is almost completed.

Time after Time

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A few minutes ago I went in to check to see how she was doing. She told me that Tari picked out some really cute birthday cards this time around. (Tari was not with us shopping for cards yesterday but that is not important.) She is working on the August birthday cards. She had just put on her favorite Rod Stewart CD on the player in her little office. This song came on. It happens to be one of my favorites. This disease of Parkinson is slowly taking her from me and I long for the old days.

What good are words I say to you?
They can’t convey to you what’s in my heart
If you could hear instead
The things I’ve left unsaid

Time after time
I tell myself that I’m
So lucky to be loving you

So lucky to be
The one you run to see
In the evening, when the day is through

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you

I only know what I know
The passing years will show
You’ve kept my love so young, so new

And time after time
You’ll hear me say that I’m
So lucky to be loving you
Lucky to be loving you

An old standard by Rod Stewart

It is a lament of times passed and an optimism for the future. I often struggle with that last part when this disease of Parkinson appears in the middle of the night or I am researching incontinence products on various websites. On melancholy days I think about the preParkinson times. It helps to not look back with longing for those experiences. Time only moves forward. I am grateful to have had those experiences with her. I am grateful for the times we have yet to experience.

Do I wish she did not have Parkinson’s disease? You betcha.. Cyndi Lauper has a song that might be more familiar with a similar sentiment. Once in a while I get very nostalgic for our previous life. I let it roll over me in waves. It is helpful.

Tonight’s menu is Salisbury steak, rice, green beans and corn. I am baking a small cinnamon crumble cake for dessert. These are some of her favorite foods. I am following the Dinner for Two cookbook by Betty Crocker which is her favorite cookbook. She will compare her version before our kiddos came along to my version this evening.

Hopefully the hallucinatory little girls that often populate our home in the evening will not appear and we can rest later.

She is looking for earrings after she awoke from her nap.

Carpe Diem.