January Eight

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

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.

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

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.

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.

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