People Are Still Dying

She went to bed early and did not seem to stir all night long.

Look at this she says to me holding up the obituary page in the paper today. I rarely look at the obituary pages. Cheryl reads them everyday. It is the one of three reasons we still subscribe to the U.S. News and World Report Cincinnati Enquirer. The three reasons are obituaries, comic and puzzle pages, banner page with today’s date. I occasionally look at Daugherty’s sports column. He is a good writer.

I asked, “Is there anyone you know?” But she does not recognize any of the names. She goes through the list several times. The first go does not register every name. She has had two and a half doughnuts and she brings a clementine orange as well as some orange juice with her to her chair as we settle to watch the TV. Lately I have been purchasing Minute Maid orange juice concentrate from the store. It is about $1 more that the store brand orange juice. I do not drink orange juice with breakfast. It is the only thing Cheryl drinks and has been for some time.

She tells me that the Enquirer publishes a list like this a couple days a week and it is much longer on Sunday. I relax as I listen to her talk about dead people. Death is a part of life I remarked. Yes it is she replied without looking up from the list as she read it one more time.

She reads the list carefully as we watch Sunday Morning on CBS. There is a story about Liza Minnelli. Cheryl catches the reference to Judy Garland at the end and remarks that she is dead too. She is thinking Liza is dead, I suddenly realized. There is no point in correcting her thought so I do not.

It is Donut Sunday and she is sitting with me watching what I think of as our Sunday show. We used to watch this show on the VCR after Sunday mass. We often stopped at the Pleasant Ridge Donut Shop on the way home. We always walked to church.

Last evening after church we went to a local pizza haunt to enjoy the quiet and have something to eat. The Cincinnati Bengals playoff game had sucked the life out of the late afternoon pizza scene. The NFL had assigned them the 4:30 PM slot on Saturday. Few people attended church that evening. Some of the lack of attendance may have been due to the latest covid wave or the play-off game.

After we entered the empty restaurant and settled at our table conveniently located with a clear view of the sixty-inch flat-screen TV, another crowd of six appeared and was seated at a nearby round six top. After our dinner – a small pizza for me, a favorite appetizer for her – I suggested that we drive over to a local bakery for some doughnuts or a coffee cake for our breakfast tomorrow.

We did that and as luck would have it, the doughnuts were a special price to move them out of the store. I will have to remember this for future reference and future Donut Sundays.

Today is a good one. I am pretty sure that she slept well last night.

Carpe Donut Sunday Diem.

A Third of the Way

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!

The Bread is Made. The Meatloaf is in The Oven.

Many gather at this time of year. The plan B gathering area for Cheryl’s family is at our house. It was supposed to happen at her brother Ken’s house. Ken’s wife is ill but she is on the mend. The dinner count is down by two. Cheryl’s sister Debbie also cannot attend. Sometimes grand kids sports get in the way as families grow. But all is well. Our table sits eight comfortably and we now only have five. Hopefully there will be leftover cherry pie.

Children visit their parents’ home. Grandparents visit their children’s homes and when they leave the mess stays there. In this grandparents’ home the gifts are all wrapped, sorted and ready for transport. Santa is unsure of the number of stops required this year. He is awaiting further instruction from the other Clauses.

Traditions abound and new traditions are made. Sometimes big brothers help little brothers. Zachary is the smallest one in our bunch. He has only had four orbits around the Sun so far. It looks like he is being mentored on decoration hanging.

Even some as sickness creeps in and some cannot visit. Zoom and Face-time is meant just for this situation. What a wonderful technological world we live in for a short time.

‘Tis the Christmas Season

Carpe Diem.

Cheryl’s Cookies (Not the Commercial Venture)

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.

So What Should I Do?

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

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

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

Traveling Where?

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.

Right and Left

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.