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

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.

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.

Why is Slumber so Hard to Achieve?

The ageless question that I ask myself. Why does Parkinson not allow her to sleep and rest?

Tuesday – dinner with friends; A completely sleepless night afterward. Up, down, up, down. Eventually she slept for a couple hours.

Wednesday — nothing special about it, just Wednesday. A totally restful night. She didn’t move when I got up several times.

Thursday — Exercise class as normal. Overnight a couple odd things; teeth brushing at 2AM and Noxzema face cleaning ( I said not church today) she came back to bed. Leg pain — half in and out of bed at 5AM.

Friday was slow moving. Overnight she slept through although she was awake when I came to bed after reading (11:30PM). This morning for the first time she leaked. She was totally asleep when I got her pills at 7AM. She didn’t awaken for her bladder. She did not act upset about it as she has in the past when she occasionally had mistaken perspiration for a leaky situation.

Saturday overnight she slept peacefully. I awakened her at 3AM or so to use the toilet. She easily fell back asleep. She was sleeping deeply when I got her pills at 7AM. We went to church in the afternoon. She missed her 4PM meds in the confusion of preparing for church at 4:30PM. We had dinner with friends after church.

Sunday morning she was agitated and slept fitfully. She was fidgety in bed. In the morning she was worried about something. We went to my son’s house to celebrate a birthday of one of the kiddos.

Sunday night and early Monday morning she slept little. She was certain she had to prepare for the appointment with her neurologist at 3AM. We read the calendar. I showed her the annoying alarm clock that displayed MONDAY. She slept little if at all. I reminded her several times that her appointment is tomorrow TUESDAY. The information did not reassure her nor did it seem to stick with her even as she insisted she understood what I had told her.

Monday (today) she is still convinced she has a doctor appointment.

Carpe Diem…

Best Descriptors for Insomnia

Ironical

  • Peaceful as a truck driver on amphetamines
  • Restful as an old man with the bladder storage capacity of a peanut
  • Satisfying as a rock star on speed
  • Quiet as Michael Jackson after practice for a concert
  • As restful as an hour after sixty-four ounces of colonoscopy prep
  • Rejuvenating. Much like being chased by a mother bear after you’ve noticed her cub behind you on the Appalachian trail.
  • Adrenalin rush leads to melatonin misfire

Last night was a particularly unsatisfactory overnight experience. It seemed as though Cheryl did not sleep at all nor did I. I tried a new idea out on myself. Instead of becoming angry with her disease, her insomnia and myself for getting angry I laid alongside of her thinking of funny ironical and satirical ways to describe insomnia. It is hard to be creative at 2AM. I kept falling asleep. When I awakened again, perhaps an hour later, feeling a little guilty for falling asleep, I was worried that today would be especially bad.

Yesterday we had dinner with my cousin and his wife visiting from the west coast. It was a pleasant afternoon and evening full of catching up and conversation. Cheryl seemed to enjoy it even though her evening meds attacked her and she sought refuge on a couch in the back office of my cousin-in-law’s condo. I think that embarrassed her even though we assured her that she should not be.

On the way home she expressed how much she enjoyed herself. When we got home she hunted for comfy clothes and we watched a favorite show together. She went to bed at her normal time around 10PM and I sat up to read for awhile. When I went to bed later she was still awake but that is not unusual. She is often awake for a bit after she lays down. Sometimes it is a long bit. Last night it seemed to be all night.

Early this morning she told me that the kids needed breakfast. I think I raised my voice when I told her that there were no kids living with us but she had left the bedroom. I am sticking with that excuse.

Someone said that you can sleep when you are dead. What a morbid thought that is. So, I began my thought experiment. Some of them I remembered this morning.

Haiku: Adrenalin rush; Sleep is disturbingly sad; Melatonin fail. 🙂

Perhaps I will get my sonnet maker out and think about that for awhile. Or I could read a book and nap later today.

Carpe diem or carpe nox. Carpe whatever you want.

Frustration and Anger

Lately I have been experiencing a bit of what I think of as Caregiver Burnout.

We seem to have repetitive conversations about where we are, where we live, who is here, who is not, where we are going today or not, when church is or etc. I admit to raising my voice in a natural inclination to getting the conversation to stick in her head. I can hear myself getting louder and cannot seem to resist. Later when I reflect on it, such as now, I want to remain calm and discover a quiet informative way to convey the same information to her in a way that helps her to remember. I find it to be doubly frustrating. She cannot remember so she will ask again. I repeat the information about dates and times and where. She cannot remember so she will ask again. (Urgh!) When I raise my voice, she thinks I am angry. I know I am frustrated. Maybe I am a little angry. It is hard to not be angry with this annoying disease.

Her inability to remember conversation and detail just an hour later is frustrating to her as well. She makes little notes to herself to help her remember. The next day or two or three days later she will ask me what I wrote her this note for as she holds up a note that she previously wrote to herself as a reminder. She does not recognize her handwritten messages. Parkinson jitters and stiffness has destroyed her calligraphy. She seems to not believe me when I tell her that I did not write whatever note she is holding in her hand.

I kept this particular note. I cherish it. She struggled very hard to remember how long we have been married this year. Along with all the other things our family calendar has become meaningless to her. The other picture is a sample of what her handwriting used to be. I have kept all of our letters we exchanged in high school. I suppose that makes me a romantic. 🙂

An added frustration is her complete inability to remember medication coupled with my occasional failure to also do so. I have set her phone to alarm for each medication time. She sometimes resets the alarm and does not take the meds. Occasionally I miss that. It is a constant battle between her Parkinson and my old agedness.

Over time I have taken over the duties that she used to do in our home.

In this second year of the pandemonium the pull between now and what was before is infuriating. Keeping track of her stuff and mine reminds me of how things used to be. She used to tell me what we were doing and where to go to next. Now the shoe is on the weaker foot. Occasionally that foot hurts.

It’s hard to enjoy the journey if you can’t see the road. It is so intensely unsettling to travel an invisible road in the dark.

At least we are vaccinated and boosted. The road is pretty long even when not visible.

Carpe Diem!

October

Holy Moly it is October.

The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.

Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.

Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.

Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.

Carpe Diem. Happy October.

An Odd Conversation

It is an odd conversation for two people who have spent the greater portion of their lives together but these days it is less so. Last evening Cheryl was lucid in her confusion. She was unsure of where she was and she was unsure of who I am. We calmly discussed those things. She seemed to know that I am Paul and that her husband is Paul but was unable to associate the two concepts in her mind. We talked around those concepts for some time. She expressed the fact that it was sometimes a little worrisome that we were staying here for long periods of time.

The conversation changed to; if you could take me home then I could get some rest. I think I am very tired. A friend and work colleague had told me a story recently about a similar experience with his mother who had Alzheimer’s disease. He got her to put on her coat and rolled her around in her wheelchair and announced, “We’re home!” I tried a similar tactic.

I got her to bring whatever she needed with her and we got in the car and drove around about a four mile long rectangle. On the last leg we turned right onto our street in the same way we might have come from other short trips to take a walk or visit the kids, she said when we get home to the condo, I am going to get ready for bed. She had recognized the approach to our home from the west. Her mind said to her – we are home – I guess. She was okay when we walked in the door.

As I went back out to the garage to turn off the lights and lock up she said to me,”You’ll call me when you get back home?” This is something her mother always wanted the kids to do. Cheryl always called her mom when we arrived home after we left her house to say we arrived safely. I do not know if the other kids did this or not.

I told here that I would stay with her until she was settled in. I did not ask her – who am I? I have done this in the past and although it sometimes bumps her into current reality it was not working tonight.

Earlier she had told me; you are Paul but a different Paul. It seemed as though she was offering an answer that she thought I wanted to hear much like a child trying to please a parent would do. After “taking her home” I did not want to disturb that. I told her again that I would stay with her that night and she seemed satisfied with that.

Sometime you have to drive around the block to get to the start and when you care deeply about a person you love you can easily go the extra four miles.

Carpe Diem.