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

Spelling Bee

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)

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.

Someone in a Tree

It’s the fragment, not the day
It’s the pebble, not the stream
It’s the ripple, not the sea
That is happening
Not the building but the beam
Not the garden but the stone
Only cups of tea
And history
And someone in a tree

Stephen Sondheim

A powerful thought from a master poet and songwriter.

Tiny Things Change from Day to Day

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.

Not in a Long Time

Sometime ago about two years ago Cheryl struggled with fainting.  The neurologist blamed it on orthostatic hypotension and she does have some of that.  It is  measurable.  Her standing,  sitting and laying blood pressures are all different.  But two years or so she had fainting spells sitting at breakfast table after eating while working the puzzles in the newspaper. I got so used to it that I parked a pillow from the couch one one of kitchen chairs to be handy when I laid her on the floor.

Today we got up later than normal after Cheryl got meds on her 7AM schedule.  She washed her face, brushed her teeth and we had the church funeral discussion.  I made blueberry pancakes.  Her alarm went off for her 10AM Sinemet and Entacapon so she ate them with her vitamins and pancakes.

After eating I got cleaned up myself , sorted the laundry and dressed the bed. It is Friday (laundry and checkbook day). I got the washer started on the first load and staged the rest in the utility room near the washer. As I came back into the living area I noticed Cheryl seemed to be asleep in the chair by the kitchen table. She had fainted midmotion while removing the snap top of a container of crunchy snacks she intended to munch on while doing the puzzles. She was seated stiffly in the chair.

I got a pillow from the couch and laid it on floor and laid Cheryl down. She was stiff. I put her feet up on the chair. In the past she would wake up immediately after I laid her on the floor. She did not today.

This morning she laid there for awhile still out of it. It was unusual from a couple years ago. The stiffness was also unusual. Previously she was very limp. Eventually I was able to get her up off the floor and into a chair again. I got her walking frame but she was unable to pick it up off the floor. Tried to help but she kept pushing down instead of lifting up. It was as though her brain had the directions reversed. I got her to sit again and I got her transfer chair from the garage and with that I moved into the bedroom and got her to lie down.

She had very low blood pressure. We have meds for that. I gave her the 1PM dose of BP medicine at about 11AM and coaxed her to drink more water. I nagged and hounded her to drink more water, orange juice, tea, coke, whatever she wanted. There is a background theme of anxiety about incontinence at work here.

Eventually she came back and realized we had missed the mammogram appointment. We also missed chair yoga. We made it to the finger exercise class. The checkbook balanced and the laundry got done. All was well again. A few more steps down the road were behind us.

Carpe Diem.

Don’t Think, Just Do

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.

Dinner with Friends

Yesterday evening we had dinner with friends.

Menu – Salad; White Bean and Whole Grain pasta soup from the MIND Diet (p. 208); homemade honey wheat bread; pumpkin bread for dessert

These days I get salad in a bag and cherry tomatoes in a package.  Using two varieties from Del Monte – fresh spring mix and garden mix, I put that together with a fresh cucumber and some sliced onion arranged nicely on top with a sprinkle of Tillamook sharp cheddar cheese.

The MIND Diet cookbook has some very good recipes.  I usually do not try new things out on guests but this recipe I had been wanting to try for sometime.  As with all soup recipes it makes more than Cheryl and I could eat at one or two meals so I selected our dinner guests as guinea pigs.  I wrote their comments in the cookbook pages above along with my modifications.

I do not have vegetable broth hanging out in my pantry.  I usually use chicken or beef broth alone or in combination in various soups and stews.  I do not know what rice consistency means so I took that to mean little pieces.  I chopped it into very small pieces with my favorite knife.

I decided that this soup would go well with my own version of honey wheat bread.  This bread I have made many times since I started baking in the late 1980’s.  This is the general ingredient list that I have settled on over time:

  • 2 cups of whole wheat flour
  • 1/2 cup of honey
  • 1/2 cup of unsalted butter
  • 2 teaspoons of salt (I use sea salt)
  • 2 cups of warm water
  • 4 1/2 teaspoons of dry yeast (I use yeast in a jar.)
  • enough bread flour to turn it into dough — typically 4 – 5 cups

Making bread for me is meditation.  It matters little what is going on around me, I am focused on the bread.  If anyone reading this has celiac disease, my heart goes out to you.  I my mind there is nothing better than fresh bread, slightly warm, from the oven.  And for me personally there is no more relaxing activity than making and baking bread.

I use a wonderful older model of KitchenAid mixer that I have had since 1980-something. It has a big stainless steel bowl and one cup of the whole wheat flour, the yeast and about 1/2 to 3/4 cup of water goes in the bowl first and is mixed.  I let this rest and the yeast grow for about fifteen to twenty minutes.  Bring a book.  You will have time to get into the story.  I put the butter, salt and the honey together with the rest of the water into the microwave for a bit to soften the butter.  Do not let it get too hot (less than 120F).

After it looks fluffy in the bowl I used a paddle mixer to mix the rest until the paddle no longer works.  I switch to a dough hook for the last mix.  Dump in the rest of the whole wheat flour and the water-honey-butter-salt solution into the bowl with the mixer running on low.  Add the white flour a cup or so at a time until the paddle is substituted for the dough hook.  The dough will hang onto the hook and wipe the inside of the bowl clean.  Stop adding flour and let the mixer run on two (2) for five more minutes.

Dump the dough out into a greased bowl. (I use lard but butter or Crisco will work.)  Cover the bowl with plastic wrap and set in a warm place to rise until doubled. (I use my oven with the light on.)  This takes about an hour.  Afterward punch the dough down and turn it over in the bowl.  Recover it and let it rise again.  It will be faster this time about 20 – 30 minutes.  After the second rise, dump it out onto the counter and split in two loaves.  Put each into a greased bread pan (5×9 inch) and let rise again for ten minutes or so. 

Preheat the oven to 375F.  Bake the loaves 15 minutes at 375 and then change the temperature to 350F.  Let bake for another 20 to 30 minutes until you like the color.  I usually take the loaves out of the pans in the oven and let bake without a pan for the last five minutes or so.  Let the loaves cool for about an hour before cutting.  Heaven.

From the Del Monte can

I have noticed that over time pumpkin is put into a 15.5 ounce can.  No matter the recipe still works.  She follows this recipe exactly. I had to make a special trip to the store for allspice. When I make pumpkin pie I do not use pumpkin pie spice. I used a combination of cinnamon, cloves and ginger I found in another cookbook, so, I did not know we were out.

Cheryl always makes a buttercream frosting for this before serving.  And since we can we put whipped cream on top. Yum.


Our friends came over because Bill was recently diagnosed with Parkinson’s disease.  It got me thinking about our situation and how lonely it felt at first when we started down this road.  We met Bill and his wife at an informational lecture at Parkinson Community Fitness. I decided to take it upon myself to intrude upon Bill’s life and talk about it.  I invited him and his wife to dinner.

It was a great time… but the conversation never drifted far from PD.

Carpe Diem.