Kindness

A Third of the Way

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It is now a third of the way through January. Cheryl and I went out to a small diner on the other side of town to visit with one of her life long friends.

They call themselves the “Clementines”. They attended grade school together and many attended the same high school. They number about a dozen and they used to meet every other month at a local pizza place to chat and reminisce and catch up.

Cheryl was the the original organizer of this group and convinced the others to come and chat. She teased many of them into it at first. She kept the friendships alive. And then Parkinson’s hit and took away her organization and her cognition.

At first she hid it well. It drove her crazy that she might forget something or someone. The computer, something that she had used throughout her working career as a database analyst, something she wrote code for to extract information, became a confusion. I (behind her back) asked one of her friends t take over the organizational task. Kathy stepped up and did it.

Covid struck and they moved to Zoom. I set up the zoomeetings for a bit because I had a corporate account with the community college that I work at part time. Kathy got her own license because she was using Zoom to visit with family.

Today we went to lunch with Marilyn who was unable to zoom a few nights ago. It was a wonderful lunch. Cheryl was able to talk to someone other that me in person.

Tonight for dinner I made oven fried chicken and roasted brussels sprouts with carrots. But for dessert I made Apple Oatmeal delight which is a recipe from BookBakeBlog’s site pages. It was pronounced good! Write that one down!

Apple Delight (not BookBakeBlog’s name)

Life is a journey. Enjoy the apples (and other fruit) were you find them. Carpe Diem!

Cheryl’s Cookies (Not the Commercial Venture)

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Living with a parkie makes me alert to new information when it comes up. That being said I do not always recognize my new task. This is about becoming a master cookie maker on the fly.

Executive function

Dementia occurs in about 40% of Parkinson’s sufferers. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective. Cheryl’s reaction often is anger to some perceived slight or merely, the question, why do it that way? (It is an engineer’s question.)

It starts with me. Words and question structure is important. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly.

How to do

Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.

My perception of making cookies is one of a trivial exercise in baking. That seems to be an incorrect perspective. Cheryl’s helping me. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. (smiley face)

Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot.

Where to start

To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory.

But not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make suggestions such as, yes, we have put that in the mix. Shall I add the butter?

Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.

How does one check for doneness? It is common sense! Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…)

Cut out the Crap in the Conversation

To a person standing nearby this conversation can sound rude. It sounds like one person is giving another orders and it can be that way. If, however, it is done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking.

The onus is on the care partner to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).

We did wind up with our first battle batch of cookies. Although they are a motley crew, they taste fine.

Carpe Diem.

Spelling Bee

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Early this morning as I came back to bed Cheryl spoke to me. Listening, I quickly discovered that she was not speaking to me. She was participating in a spelling bee.

The current word was “manage” as were the next three words. The teacher or whoever was giving the words out eventually moved on to anger, agree and message.

A cough awakened her and she asked me, what’s next?

I told here today was laundry day and I would make blueberry pancakes for breakfast.

I like blueberry pancakes, she replied.

Carpe Diem.

It’s Easy to Tread on Someone’s Heart (and other AHA moments)

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Here is the setup. Cheryl has a wheelchair tag. In fact we have two. When Cheryl was still driving we applied to the state to get one for each car.

A few weeks ago we got in the mail on two different days a form for the state to renew our wheelchair tags if we wished to do that. The forms require a script from Cheryl’s doctor. When they came a couple weeks ago I put them in a special position on a ledge wall between the kitchen and the rest of our living area in the hope that I would remember to take them with me to our doctor appointment in December. Cheryl agreed that was a good spot to leave them.

Today, she re-discovered them and was telling me what they were. I let worry and anxiety about losing them before the doctor appointment come over me. I took them from her and explained why they were on the ledge. Thinking back on it, I was not that forthcoming with why I was putting them back on the ledge. She became very angry. I apologized for being a stinker. It is a delicate balance on some days and I admit I am not always up for it.

Of late, Cheryl keeps her emotions just below the surface. It seems to be a symptom of her disease. She is constantly thinking about what was. Hearing a particular hymn in church will cause her to weep. When she sees pictures of the grand kids on our electronic picture viewer, they become real to her and she will talk to them. If I take a deep breath or just simply sigh, she will ask me what’s wrong? If I do something and she feels slighted in some way real anger appears. All of these reactions are the same as any feeling person except maybe talking to the hallucinations. Parkinson’s is not real to her. The unsteadiness and jerky motion is not visible her until it is.

It is hard for me to not be a helicopter care partner and hover close by. It is hard for me to not be protective of things that I am certain will be lost in her PD and Lewy body confusion. She displays punding style behavior which in her case seems to be arranging and rearranging her papers in her office. These papers are often random collections of emails and news letters assembled with no apparent theme. (I worry that real papers will disappear in the organized randomness of her office.) I try to watch what goes into her office and short circuit anything of importance before it gets there.

Sometimes, like this morning, I do that without the gentleness that I should have used. When that happens I tread on her heart.

Edie’s prayer

I should have read this when I got up this morning.

Carpe Diem

Right and Left

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Recently (yesterday) I convinced Cheryl to go to a chair yoga class. I thought it would be good for her. In my sometimes helicopter care partner mode it seemed to me that I might be able to find something for her to go to most everyday at PCF. She often wants to get different things that she uses in class so that she can do the exercises at home. But lately she does nothing at home that looks like exercise. There is nothing unique in that, many people to not.

Today when I talked to her about going to class she said, I don’t want to do that. I have a hard time knowing my right from my left. I have problems with a similar thing I said. I always have to say the alphabet jingle in my head. Elemenopee… I thought about what I said suddenly. Why was it necessary to make it about me?

She went on to say that all that reaching and stretching was hard. Somewhere in her conversation I realized she thought I was taking her to chair yoga. I spent another ten minutes or so convincing her that this class was one that she had been taking all along. It was not a new class. I realized that I was rushing her into trying new things to exercise her body (tired with PD).

Apathy and lack of interest to try new things or finish things once started is common in PD sufferers. I found myself reading about Apathy in Parkinson’s patients while she was exercising at PCF this afternoon. The internet of all knowledge directed me to Michael J. Fox; the APDA site; the Parkinson Foundation and others. All say approximately the same thing.

Apathy describes a lack of interest, enthusiasm or motivation. It interferes with the effective management of Parkinson’s disease (PD) symptoms, since apathetic people are less inclined to do things like exercise and follow their medication schedules. …

Apathy can be frustrating for people with PD, caregivers and loved ones. Understanding apathy as a symptom of PD and finding ways to cope with it are key to ensuring a good quality of life and for maintaining good relationships with caregivers, family and friends.

Therapies

Currently, there are no proven effective treatments for apathy — no pills or special therapies — but structured activities and opportunities for socialization are a useful approach. A regular routine, continuing to socialize and exercise even if you don’t’ feel like it…

from the Parkinson Foundation website

As I was reading along various sites, Cheryl was exercising three feet away. Same things are easier to get her to do. By that I mean things that she is familiar with, things she has done before. And as I watch her do the exercises she changes. Her motion becomes more fluid and steady. She does not quit. She pushes herself. And tears come me. What’s up with the emotional response in me? What a pain PD can be to people close by. Once she gets started all can be well. As class moves on she is an enthusiastic participant. I am merely an observer and not someone to argue with. (smiley face with tears)

More … My own thoughts … Usually when I write one of these messages to myself I struggle with what point I am trying to make. Not so here. It is easy to drift into making something about yourself. I believe that it is a natural act. To understand some thing, some idea, some opinion, some action of others we relate it to some local knowledge we already have. Educators call it scaffolding.

What happens when one has no similar knowledge? It can be made up out of whole cloth. It is natural. We, at least many of us, want to empathize with the other person’s unsatisfactory experience.

A life lesson, I suppose. Maybe an AHA moment appeared for me. Try to stop making it all about myself and still empathize with Cheryl. Or, at least, do not vocalize it to her.

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.

Don’t Think, Just Do

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Words from the Karate Kid and advice given to Drew on B-Positive tonight.

It is always possible the think and over think one’s situation and find a reason to not do something which could easily be very beneficial to one’s own well being. I discover this often with care giving to Cheryl.

Today Cheryl’s cousin-in-law (a relationship I just made up) made a very kind offer to me. Let me back up a bit, her CPAP machine bit the dust. She thought it was merely the cord but as it turned out it was dying long before it bit the dust completely. I brought it home to try to figure it out. Alas I could not. I do not have a manual or even know how it is supposed to operate.

She came to pick it up this morning and as she had never been to our home I showed her around and we chatted for a bit. I mentioned that I was taking Cheryl to her exercise class in about an hour. As she left I walked out to her car and she said that she did not live very far and if I needed someone to sit with Cheryl while I did something or wanted to ride my bike for exercise, she would do that.

I choked me up for a second. A kind and very generous offer of help, freely given, not requested, completely out of the blue. I sent her a text a while later and asked how much warning she might need to do that for me. She only needed a day or so warning and even suggested which days might be best. I thanked her profusely.

I do not ask for help with Cheryl, probably because my maleness gets in the way of that. I am planning, not thinking.

Some days the road seems smoother and less treacherous when you are not focused on the potholes coming up.

Carpe Diem.