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.
I should have read this when I got up this morning.
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.
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.
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.
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
A powerful thought from a master poet and songwriter.
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.
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.
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.
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.
Every once in a while I get creative with the refrigerator contents. Last evening I had some frozen butternut squash I had cut up and cubed a couple days previous. Usually I roast this in a 400 degree oven with a little salt and pepper and olive oil for about 15-20 minutes but I decided to try something different.
I had also a 1/2 pound of ground beef. And I had a half jar of Barillo (12oz.) tomato basil sauce. I took about a cup of butternut squash and simmered it in about a cup of water for about 15 minutes on top of the range.
When it was soft I poured off the water and smashed it into a pulp and dumped in the Barillo sauce. When I recover unused commercial sauce like this I often put a couple tablespoons of water in the jar to rinse the bottom, I poured this in as well. I added a pinch to a quarter teaspoon of red pepper.
I sauteed the ground beef with a little olive oil and rinsed it in a colander when it was browned. This removed some of the grease left from the saute. Cheryl has a hard time with any sort of greasy food. She likes it but about an hour later it gives her a lot of indigestion.
I added this to the sauce and let it simmer gently with the lid on for about 20 minutes.
While that was happening I got the water going for 4 ounces of spaghetti. When that was ready I plated it up.
I sprinkled a bit of grated Parmesan cheese on top.
She pronounced it good.
The picture at the top is not mine. It is from fitmencook.org. How cool is that? Perhaps I am a closet fit man. (smiley face here)
In a conversation tonight at dinner, Cheryl became very sad and longing for the past as we started to talk about the holidays coming up. When we were younger we had this huge five bedroom house. Everyone was welcome. My mother and father were still alive. Cheryl’s mother and her gentleman friend, Bob were still alive. Dinners and holidays were loud and raucous with kids coming and going. There was beer and wine. My mother enjoyed gin and tonic. I still order that in a restaurant as a tribute to Mom. We longed for those days. Cheryl became sad in remembrance of those times.
I suppose in a way I did too.
The only constant in life is change. I do not remember if that comes from the Hindu or Buddhist religion but everything is in motion. Embrace the change. Make new memories.
If you let it over take you nostalgia can distract you from the present in much the same way that anxiety about the future does. Most of us have little prescience of what comes next, so anxiety and worry is unwarranted. Our personal history has been lived. Focus on the now.
Many years ago I had a conversation with my father. We had traveled to a local state park near a lake. The idea was to let the kids run around and have a picnic. We were at the little beach area alongside of the lake. The kids were running around having a good time and after a few ounces of refreshments I needed the facilities as did Dad. While standing and staring at the wall inside, my dad remarked that he wished he was a young man again. I think he may have said, “I wish I was eighteen again.” He was making reference to the young girls in their bikinis and his nostalgic memory of youth.
I responded with, “Me, too! But probably for a different reason than you are thinking.”
“When I was eighteen I was still living in your house on your dime. You used to give me money for gas.”, I told him.
“Now I have a wife and three kids to take care of and support. I don’t regret any of that but it was a lot easier when you were taking care of me.” I said.
That is not the exact conversation but merely how I remember it. Dad smiled and remarked that he was not thinking about it that way. Everyone’s nostalgia is different. I had many life conversations with Dad.
Looking back occasionally gives perspective. I realized then that, although ten or fifteen years earlier my life was easier from my perspective, I would not change a thing that was happening now. My now was a wonderful wife, great kids, a wonderful family and a great outing with my children’s grandparents.
It is much the same now. Parkinson’s disease takes a lot of time and although I wish it was not. It is. I am constantly provided with opportunities to be a better husband. Do I want those opportunities? No, I do not but that does not change the fact that with a little bit of attitude change, a little change in perspective I am better at life with my care partner. This is a mutual effort.
So let’s not linger in nostalgic times. They were good times. They are not now times. They are past.