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.

Special – or not – Spaghetti Sauce

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)

Carpe Diem.

Let’s Not be sad During Holidays

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.

Carpe Diem

It is All Hallow’s Eve

Ghosts and goblins come out during the daytime these days of the covid wind down and the continued concern for small ones who are the ghosts and goblins. We will see no ghosts or goblins unless we go seek them out in their own habitat.

For our own scary feature to today’s activities, Cheryl got up early so I gave her the 7 AM meds at about 6:45 or so and we went back to bed. She got up and dressed at 7:30 while I napped on until 9 AM. (That felt great!) When I came to the kitchen she informed me that she had taken her medicine. She had taken her 10 AM meds at about 8 AM. I need a new system. I think.

It might be a scary day. So far, however, it is not.

Poking around my photos and ones that I could on Facebook has brought back wonderful memories of times before. I cherish them. These pictures are Halloween through the years and my favorite picture of my mom and dad as Raggedy Ann and Andy. (Truman in sunglasses is not Halloween but it is a great picture.)

Carpe Diem and Happy Halloween!

Almost the last day of October

Last evening she asked me, are you staying here tonight? To which I responded yes, I live here. You live here? Yes…

We have these conversations occasionally.

I wish that we did not have them but we do. Every day is a new adventure. It is hard to keep that in mind. Last evening I was very hard for me to resist correcting her. She wanted to call her sister to find out who I was. I decided to let her do it. I am sure her sister was confused. I did not find that out until earlier when I sent a message to her sister explaining Cheryl’s confusion yesterday.

Carpe diem.

From Day to Day

Emotions run close to the surface for me…

Sometimes she talks to me as though I am an acquaintance and it breaks my heart.  That is not my original phrase but someone made that comment to me and I thought, absolutely, that is why it sounds odd to my ear.

I have learned over time, however, that it may just be my perception and may have little to do with what she really feels.  It is not possible to know what another person’s thoughts and feelings are except if expressed by the other person.  In a mind afflicted with Parkinson’s disease the words may not come. (Aha)

As a care partner the job is two or three times harder because a lifetime of social clues enhanced by 50 years of living to get used to each other’s mood, body language, language intonation and facial expressions has to be ignored. Sometimes those are only partially ignored. It is a mental workout. It is exhausting in many ways.

Her face can freeze. She looks angry. And then not. She can look very ill. Ten minutes later her smile is back and my heart leaps.


Today we are doing two exercise classes oriented toward PD patients. The first is an exercise and stretch series of activities. The second is oriented toward hands and fingers. Exercise helps with many of her symptoms for a bit. Her steps are more lively. Perhaps with her new finger class she will be able to hold onto the cereal spoon and sign her name.

When her smile comes back, my steps are more lively.

Carpe Diem.

Care Partner

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

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.