memories

So many times in the evening

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She asks me if we are staying here tonight. It is a repetitive theme in her thinking and confusion. Not knowing any better I try to answer her honestly and without any teasing (which she does not understand anyway). Looking at my old notebooks and blog posts it seems that this particular confusion and some others, who I am, for example, have a cyclic appearance.

That was last night. This morning she wants to pack a suitcase for college. The idea that she needs to get ready to go off to college is totally new. The college she wants to go to happens to be the one I am a graduate of and our grandson has been accepted into for the Fall semester. These facts are probably all tumbled up in her head and sort of explain her confusion.

Another interesting nuance is conversing with me as though I am an acquaintance, someone she has not spoken with for some time. We are catching up. We spent most the of the day talking in the third person as though acquaintances. It was a warm late winter early spring sunny day so we took a walk in the park. We talked about many things. We talked about the weather of course. We talked about how far you used to be able to see across the little creek we were walking next to. On the other side of the creek is a concrete and asphalt reclamation business with mountains of paving to crush and recycle. It once was a smaller pile of refuse.

We talked about children. She told me about hers and asked me about mine. She was amazed and intrigued by the fact that our children had the same names. It seemed that the only difference was that her children were in their teens and twenties and my children were middle aged. (smiley face here) It was unimportant to her that these teenagers had children which were her grand children. These conversations were hard to follow but I was able to ask questions and find out more like any good friend would. Most of the time I was able to keep the tears out of my eyes as we created a memory of a good day for her.

She suddenly switched topics and talked about what to do about Thanksgiving dinner. I gently pointed out that it was barely March and Thanksgiving day plans were several months away. Undaunted she replied that it would be here quicker than you think. There is a lot of truth to that last comment. I have noticed as I get older the year goes by quicker.

I promised to get right onto organization of who does what. I fired off a text message to our family text-party line and got positive responses from everyone. Our daughter volunteered to host.

Carpe Diem

Teasing. Do You Want Some Coffee?

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Cheryl does not drink coffee. She never has. I do. When I make a pot of coffee I ask her in a teasing fashion, do you want some coffee? I made a pot. She says, nope. No coffee for me thanks. it is a conversation we have had for fifty plus years. I love her. Sometimes she will ask for something else; tea, juice, Coke and I will get that for her instead. She seems to be back in this time and place now. Earlier she was not.

This morning that seemingly innocent exchange stuck with me. Her early morning sun-downers syndrome was staying with her and the sometimes accompanying hallucination was staying with her. It made me nervous. I had purchased a couple apple strudels from Marx Bagels the day before and kept them aside for a breakfast treat. Lately she is only interested in doughnuts for breakfast. That part of the breakfast was okay but she kept offering some to someone named Tim. Tim who? I asked as I had not heard that name before. Tim Fiebbig, I go to school with him, she said.

She thought the strudel was okay but she was hoping for doughnuts. I told her that if she really wanted doughnuts I would get some but do not leave until I get back. I zipped out to a nearby UDF for a couple doughnuts and some coffee. Back in a record fifteen minutes with three doughnuts and fresh coffee. While I was gone she sat with Tim in her office to chat until the doughnut man returned. She broke one up into little pieces and offered it to Tim.

In an effort to understand where she was in her mind I quizzed the siblings. This was (is) an elaborate illusion for Cheryl to set up a chair in her office so that she could converse with Tim her imaginary friend from her childhood. She did not seem puzzled that he was in her office. I hoped that it would pass and left her to talk to Tim for a bit. After a conversation of several minutes she came back out and sat with me to watch the morning not-so-newsy news program on CBS.

It is later in the day as I write this and she is still struggling a bit with the images and memories. Those seem to be easing and she went to shower and put on clothes. She seems to be back.

Some is, no doubt, grief caused by family circumstances. Paul Welch, our son-in-law’s father passed away yesterday. He had Parkinson’s disease/ Lewy body dementia also. An incredibly aggressive version apparently because he was only diagnosed about two years ago.

As we head down this road of Parkinson, it is helpful for me to understand what she is remembering. I am often unsure of what to do with that information. Sometimes I turn it into a conversation about that time in her life and let her reminisce for a bit. Sometimes it works and she gently realizes that she is reliving a memory. Sometimes it does not work.

It is a twisty-turny journey. My training many years ago as an engineer has been poor preparation for this time in my career. Spiritually it is a challenge. Engineers want to fix things. This appears to need a total redesign by the Chief Designer.

Carpe Diem.

I Often Read Maria Shriver

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She writes uplifting and spiritual thoughts in a weekly email newsletter she calls “Sunday Paper”. Today she writes about changes in life. She struck a chord in me but probably not in the way that she intended.

This Parkinson thing is a dramatic change in our life. Maria uses as her focus a friend that is moving far away and talks of pivoting toward the future. What struck me is Cheryl is moving away inside. Not purposely of course but this morning the conversation centered on location and space. She believes inside her head that we are far away from home. She asked are we going home today?

Home is a concept different to everyone. I told Cheryl as I always do when she asks this, we are home. We live here. Sometimes I go into more detail and tell her when we moved. She has a puzzled look on her face when I tell her those things. Sometimes I regret moving out of our big old house in Pleasant Ridge when we have these conversations but I have no basis for regret. She is confused now and most likely would be if we were still living in the big old house.

To me home is not so much a place as a situation. If one “googles” home the famous web search returns thousands of pictures of various houses in various places but a building is not home. Those houses may or may not be home to others.

Cheryl is where I am home. Our life was unimaginable to me when we got married 51 years ago.

On this snowy slowly warming February Sunday I am reminiscing about life and home and the twisty turny path we all follow though life. And that is my concept of home.

She sometimes thinks that we are not home. I am as long as I am with her somewhere.

A boy, a fox, a mole and a horse – great book for meditation

Carpe Diem.

January Eight

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I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.

Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.

So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.

Guys chasing a suspected super nova…

The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.

Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.

Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.

As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.

Carpe Diem!

HAPPY new year and other Random Thoughts

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It was a miserable eve.  Cheryl has had her meds adjusted a bit to help with creeping dementia issues.  The doctor has been slowly increasing the dosage to creep up on the optimal dose. The most common side effect is nausea and vomiting. The new prescription is at the optimal dose and it appears Cheryl cannot tolerate it at that level.  She has been sitting on the bathroom floor on and off for most of the afternoon. 

As she was building up to this dose for the past  several months, I expected to see some behavioral changes.  I have not. As the situation got worse I terminated giving this med to Cheryl.

But last night (New Year + 1) was very difficult and very different. I thought that perhaps this drug did not work for her but it did reduce and eliminate the strange compulsive behavior that she exhibits. She also became delusional. She was certain I did not belong here.

On the next day, Monday, I called the doctor’s office and got her nurse practitioner on the phone. It is hard to explain how excited I was to have someone call back that knows Cheryl and her condition and has seen her on a regular basis. I explained what Cheryl was going thru and that I had discontinued the medication to relieve the symptoms. The NP recommended that I adjust one of the meds she was already taking with no ill physical effects and perhaps Cheryl would sleep solidly through the night and do better the next day. It worked.

Still searching for clues at the scene of the crime (Joe Walsh).

It’s a new day.  Today is football day.  Seems like everyone everywhere is tuned to some kind of football game.  It used to be, many years ago, a time to visit our in-laws.  Our niece’s birthday was January 1st.  She died a year or so back not from the Covid dilemma but from other health issues.  She had not been well for some time. We have not celebrated her birthday for some time.  Families are complicated and estrangement is often part of the complication.

It’s a new month.  January is often cold but it seems to take winter some time to get started. This January is no different. It is rainy and poopy outside today and the temperature is expected to drop into the upper teens overnight. I am so glad we live in the times we live in. It will not be necessary for me to add coal to the fire for overnight nor will it be necessary for me to huddle underneath a buffalo skin.

The current federal administration authored a congressional bill referred to as “build back better”. The previous administration had a motto of “make america great again”.  Both of these are ludicrous. Both imply that there is something not quite right with now.  That is absurd. Nothing is wrong with now.  We are not heating with coal or huddling under buffalo skins. Slowly, ever so slowly we are converting to electric powered transportation.

Now is not perfect, of course, but it is greatly better than what was. We often think what was is better that what is. Still searching for it, clues, that is. Try to enjoy and be in the moment.

It’s a new year and thank God for that.

Resolutions? Yep. Do better at living now not ago. Try to not get fat living now.

Carpe Diem.

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

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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.

Spelling Bee

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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)

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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?

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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.