Unselfish Care

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

They are back tonight

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The little people who used to visit are back. That is my own little joke. The little people never really left our home. I was merely ignoring Cheryl’s behavior.

They were back in a vivid sense to Cheryl. This chair arrangement is left over from their visit. She was showing them the pictures on the frame. She went into full on grandmother mode describing the picture to the kiddos.

I asked who was there and she replied Natalie and Max.

We left a little while later to got to our support group meeting. While there she asked if I had called home to make sure the kids were all right. Apparently they were more vivid than at other times in her head. When we returned home she looked for them.

We sat and watched Bob hearts Abishola which is her new favorite show. The kids seemed to be gone for now.

When I tell her that there is no one else here except us I feel as though I am standing in the back of a crowded room saying this to her.

Today, earlier, she asked me to rub her hair conditioner into her scalp. I do this once or twice a week when she asks. She referred to me as “Mom”. I had a little petulant moody reaction and said “I am not your mom.” She said, “No. You are my dad.” I replied that I was not her dad either, I was her husband. To which she said, “But you are the one I love.” (AHA! Edie) She merely could not pull the name and relationship out of her head.

It was another Aha-moment in our life together. It was a very important moment. All of my life as an engineer words have had a very specific meaning to me. Perhaps the words should not when understanding Cheryl’s needs.

Carpe diem — hunt for the special moments of insight and empathy. Those are special. If you miss them they may be gone forever.

Why is Slumber so Hard to Achieve?

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The ageless question that I ask myself. Why does Parkinson not allow her to sleep and rest?

Tuesday – dinner with friends; A completely sleepless night afterward. Up, down, up, down. Eventually she slept for a couple hours.

Wednesday — nothing special about it, just Wednesday. A totally restful night. She didn’t move when I got up several times.

Thursday — Exercise class as normal. Overnight a couple odd things; teeth brushing at 2AM and Noxzema face cleaning ( I said not church today) she came back to bed. Leg pain — half in and out of bed at 5AM.

Friday was slow moving. Overnight she slept through although she was awake when I came to bed after reading (11:30PM). This morning for the first time she leaked. She was totally asleep when I got her pills at 7AM. She didn’t awaken for her bladder. She did not act upset about it as she has in the past when she occasionally had mistaken perspiration for a leaky situation.

Saturday overnight she slept peacefully. I awakened her at 3AM or so to use the toilet. She easily fell back asleep. She was sleeping deeply when I got her pills at 7AM. We went to church in the afternoon. She missed her 4PM meds in the confusion of preparing for church at 4:30PM. We had dinner with friends after church.

Sunday morning she was agitated and slept fitfully. She was fidgety in bed. In the morning she was worried about something. We went to my son’s house to celebrate a birthday of one of the kiddos.

Sunday night and early Monday morning she slept little. She was certain she had to prepare for the appointment with her neurologist at 3AM. We read the calendar. I showed her the annoying alarm clock that displayed MONDAY. She slept little if at all. I reminded her several times that her appointment is tomorrow TUESDAY. The information did not reassure her nor did it seem to stick with her even as she insisted she understood what I had told her.

Monday (today) she is still convinced she has a doctor appointment.

Carpe Diem…

October

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Holy Moly it is October.

The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.

Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.

Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.

Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.

Carpe Diem. Happy October.

An Odd Conversation

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It is an odd conversation for two people who have spent the greater portion of their lives together but these days it is less so. Last evening Cheryl was lucid in her confusion. She was unsure of where she was and she was unsure of who I am. We calmly discussed those things. She seemed to know that I am Paul and that her husband is Paul but was unable to associate the two concepts in her mind. We talked around those concepts for some time. She expressed the fact that it was sometimes a little worrisome that we were staying here for long periods of time.

The conversation changed to; if you could take me home then I could get some rest. I think I am very tired. A friend and work colleague had told me a story recently about a similar experience with his mother who had Alzheimer’s disease. He got her to put on her coat and rolled her around in her wheelchair and announced, “We’re home!” I tried a similar tactic.

I got her to bring whatever she needed with her and we got in the car and drove around about a four mile long rectangle. On the last leg we turned right onto our street in the same way we might have come from other short trips to take a walk or visit the kids, she said when we get home to the condo, I am going to get ready for bed. She had recognized the approach to our home from the west. Her mind said to her – we are home – I guess. She was okay when we walked in the door.

As I went back out to the garage to turn off the lights and lock up she said to me,”You’ll call me when you get back home?” This is something her mother always wanted the kids to do. Cheryl always called her mom when we arrived home after we left her house to say we arrived safely. I do not know if the other kids did this or not.

I told here that I would stay with her until she was settled in. I did not ask her – who am I? I have done this in the past and although it sometimes bumps her into current reality it was not working tonight.

Earlier she had told me; you are Paul but a different Paul. It seemed as though she was offering an answer that she thought I wanted to hear much like a child trying to please a parent would do. After “taking her home” I did not want to disturb that. I told her again that I would stay with her that night and she seemed satisfied with that.

Sometime you have to drive around the block to get to the start and when you care deeply about a person you love you can easily go the extra four miles.

Carpe Diem.

This Morning a small Success

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I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.

I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.

I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.

As I headed that off I reiterated that she did have exercise class today and she should dress for that.

After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.

The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.

Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.

Damn! We are out of Hall’s.  It is the only,  absolutely the only thing,  that can relieve a Cheryl scratchy throat.  (I am whining a bit. I have tried to push other solutions.  All have been rejected, alas.)  The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.

Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.

I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.

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.

She was Angry and Grumpy and Normal and Confused

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And then not. It is a puzzling disease.  It is odd and frustrating.  It is Thursday. It is a exercise class day. I had no other expectations beyond that. The morning was kinda normal.  I got up at 7AM for meds and she laid back down for a bit. We got up at 8AM. Overnight she had been angry with me for helping her to the bathroom. She seemed like she was dreaming. She forgot where the bathroom is located and became angry when I opened the doors to show her. She shifted into what I call “little kid” mode and said, “you don’t know everything. I’m going to bed.” (Her hesitant PD motion is gone during these episodes.) She has had other verbal dreams like this before. She does not remember them in the morning.

Breakfast was her usual Life cereal with dried cherries and milk. Orange juice is the drink of choice. She perked up a bit and I watched the news. The morning news is getting a bit repetitive; first the covid report, then the Afghanistan debacle and then the general disaster report, fire, earthquakes etc. Life sucks all over the world. The boys in Gaza were not throwing stones and other pieces of concrete at the Israelis across the fence. The Israelis were passing out booster shots instead. But Cheryl seemed to be doing well this morning.

Off into her office she goes to check email and see if there is any news. She checked for text messages on the way there. No emergency emails were found. This could indeed be a good day.

Close to time for her second dose of meds she reported being very tired. Indeed this is a normal wearing off of the medication. I suggested that she should take her ten o’clock and then lay down for a bit. After her 10AM meds she is up and down a lot. It takes some time for the medication to bring relief. She often reports a tightness or congestion in her chest. A coughing jag may occur. She might get up and wander the house with her limping hesitant parkie motion. I asked if she needed help with anything. She said no. I told her that her class was going to happen in a couple hours and she should start preparing for that and put on her clothes, put in her earrings and so on.

She decided I was being mean and I should leave her alone. Perhaps I was pushing too much for her to get dressed.

As a caregiver it saddens me sometimes that as I try to steer her towards activities that I am certain will help her feel better she is resistant. I admit to pushing sometimes to get her off the tired and feeling not up to it fence. She gives me her wrath in return. It would be easier to give in and accept her malaise. The relief is only short lived, as I have done that before and she wanders around in a funk for hours.

We discussed going to her exercise class at length. She told me that she knows it helps her but she was really tired at that moment. I suspect it is hard for her some days to summon up the courage, strength and ambition to go forward with this tiring disease. Her sister Janice often complained of being incredibly tired constantly. In Jan’s case she slept mostly in a lounge chair. Cheryl seems unable to nap in a lounge chair.

I asked if she wanted a little Coca-Cola and chips or a snack of some sort. Yes. What kind of chips do we have? – was her reply. Only potato chips, I think you ate all the Sun chips, I told her. Another thing to keep track of is her appetite and desire for certain foods. Up until about three years ago Cheryl always had some peppermints with her. It was basically the only kind of candy that she would eat. Today she never wants them but I have butterscotch blobs in the car because I like them. She likes them also.

She went to class. I noticed that she seems to be coming out of her funk. She had conversation with several of her fellow classmates on the way in. PCF is such a warm and welcoming place. As she came in and talked to people she perked up. As we were driving over to PCF she asked where should we go for lunch. Then she asked, “How about Skyline for lunch?” We have not been there for several weeks but it is a favorite of hers. (One cheese coney – no onions. Sinful.) We’ll see was what I thought at the time. We ate lunch at the Skyline on Plainfield Rd. (One cheese coney – no onions. Still sinful. I had a 5-way.)

We shopped at the IGA to buy groceries on the way home from Skyline.

We had corn on the cob and hamburgers for dinner.

After dinner she went to work on the labels for birthday cards. She was confused about printing labels when I checked on her but she was working on organizing things.

She came into my office at about 9PM and asked me to give her a ride home. She mumbled something like, “Mom has left so I’ll need a ride home.” I helped take her bedtime meds. I explained that we were already home and I would help her with printing the labels for the birthday cards tomorrow.

Oh well tomorrow is my birthday.

Carpe Thursday Diem!

Last night I was Someone Else

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This whole hallucination, delusional reality thing that seems to have developed during this latest phase of Parkinsonism is truly disheartening.

Last night she addressed me as “Dad” several times. I tend to ignore it when she does this because much of the time she merely cannot find a name or a term for someone or something. Occasionally it becomes a little game that we play until I guess the correct person or thing. She responds with, “Thank you” when I find the name for her.

Sometimes, however, it becomes apparent that she is having a delusional episode. It becomes apparent suddenly to me. I do not recall the exact context last evening but I became aware that she did not know who I am. I asked, “Do you know who I am?” She replied, “Dad always says you are Paul.” My heart just broke when she said that.

It is a hard to describe the emotion. It feels like something in between fear, anxiety, anger, empathy, love and disappointment.

A deep love for her as we travel this journey. One foot in front of the other as we travel step by ever so slower step. We make every attempt to enjoy the scenery and smell the flowers. We take as much joy as we can in the moment. It is hard sometimes but in the last several days new life has come into the wider family and we are happy for the new parents, grandparents, aunts and uncles.

A great fear for her future and perhaps I dread the eventual realization that I might not be able to care for her alone. Those thoughts tumble down into the mire of money and will it last and for how long and how long will we need external support and how long and how long. These thoughts go nowhere. No one can see the future and if you are a deep believer, there is a plan somewhere. It sure would be nice to peek at it to prepare.

An anxiety about all of those things is a first cousin to fear. Meditation and journaling helps. It is not my make up to leave things in the hands of others.

I have developed an empathy through walking this road together with her. It saddens me that I cannot fix it. Much of that thought comes from the feeling that the Plan is being developed as we move along the road. That sucks, big time. The engineer in me pushes back on idea of starting the mechanism while it still being developed. Poor practice as that will really blow the service budget.

A few months ago I realized that the anger I feel, a deep despairingly fist hitting anger, is with the disease and what it takes from her. I am embarrassed to admit that I am not good at redirecting my anger into action. Or deflecting my anger away from her by keeping it out of my voice. I am just not good at that last. I apologize a lot.

All of those things add up to a disappointment with the situation.

On the next day she was lucid, not confused and fine. Go figure. “everyday is a winding road” – Sheryl Crow

Carpe Diem.