extra care

The Last Day of April

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A Happy Birthday celebration — a week or so early. A poorly written sonnet:

Tis the last of April, just beyond reach

is May the tenth the date of your birth

it’s said by some, it may have been breach

No matter the details, my life gained great worth

That night that we met, our story yet untold,

unknown at the time how beautiful our life;

no one but the Great One could have foretold,

the thrill in my heart when you became my wife

Here surrounded by loving and caring siblings

To celebrate another year past with great glee

I wrote this sad poem, earnest and small scribblings

with the deepest love. I hope you agree

Our life together is amazing as your mom would say

I think so too, so, Happy Birthday!

– Paul

Carpe Diem

I Have to get the Article Written

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With that thought she got up at 1:30-ish in the early morning. It has come to me that when her dreams become real, I have to just go with the flow. I tell myself that our experience has shown that this episode will last about two hours, so be patient and helpful during that time. Some might to this as a prayer but I think of it as description of what I need to do to help her get through this nuanced dream she is experiencing right now. (And Carpe The Damn Early Morning Diem. 🙂 ) I suggested that she should have something to eat and she would be more alert, her mind would work better while she was writing the article. She agreed with that and asked what we had.

I suggested cereal with a banana cut up on top and some o.j. She took her vitamins. Later after she decided a piece of coffee cake from yesterday morning would be good also, we discussed how she could get started. She looked at the two-day old paper on the kitchen table for I bit. Maybe she was thinking about what to write? She did not tell me.

I suggested we watch TV for a bit while her thoughts gelled. We watched a couple TV shows that were previously recorded. After a few minutes as was our previous experience she became tired again and we returned to bed at 3 am.

The alarm went off at 7 am and I fetched her morning meds and we returned to bed for a little longer as we usually do. Twenty to thirty minutes is usually enough for her to get moving. I fell asleep a little more soundly than ordinary.

I woke up and realized I could not hear her. I got up and put some clothes on. I searched the condo and could not find her anywhere inside. The front door was unlocked. This morning when she got up, she left the house.

Did the rapture happen? It scared me. It is my greatest fear, not the rapture, the fact that she had wandered off looking for something she could only see in her mind. Fortunately she was just outside the front door to our building and it was not raining.

Later as she was laying down to rest she told me, she was looking for anyone awake. She was scared that no one was here. She had decided to go look in the next building for anyone. She asked me if that woman who runs things here was around – whoever that may be. I left, “What are you thinking about?”, unsaid and suggested we go out and get some sun. Take a walk. Maybe we could have lunch.

I felt bad that I fell asleep again.

Carpe Diem.

Always Learning

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One can always learn new things if you open your heart to the experience.

Recently we met with a dementia specialist. It was not intended on my part to be one on one but as it turned out it was. She had several key points to deescalate frustration and anger. Like many things that happen these days with Cheryl and me, I often forget which people and services I have investigated before. Theresa Youngstrom is a nurse and a dementia specialist. In a previous post I quoted these points from her website.

From Theresa’s website;

  • Always approach from the front.
  • Watch your body language and tone in addition to the words you use.
  • Smile and wait until they acknowledge your presence before touching them.
  • Validate their point when they are upset even if they are wrong.
  • Say you are sorry at the first sign of their frustration to keep situations at a minimum.

After we talked for a bit the other day, I realized that I had already learned a lot from her about deescalation of frustrating and angry situations.

I am sure there is more to learn.

Carpe Diem.

That Last One

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The previous post was self serving but I would like to have my old life back. I would like to have my young body back too. That is not going to happen anymore so wishful and wistful thoughts are not going to be helpful to looking ahead. Let me face forward and move on.

As hard as it is I want to try a new tactic. Much of my anxiety about Cheryl is fear for her failure and subsequent embarrassment. I project that on her. She is not concerned. She is talking about apple pie again. Today we bought more apples and she chopped them up to make an apple pie for Easter dinner.

Last night or perhaps the night before her confused head decided that she should call her sister Deb and chat her up about making an apple pie for the Easter gathering. As time moves on she seems more and more confused about what and when and who. I have explained that we are going to our daughter’s house for Easter dinner. Somehow that gets converted into Nancy and Jan and Deb.

Nevertheless I asked my daughter-in-law Mavis to come and help Cheryl finish the pie. She readily agreed.

I am hoping for a new experience and memory.

Carpe Diem.

Deli Conversations

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What gets people even total strangers to talk to each other? And what gets them to talk about intimate subjects?

The other day I was in our local IGA waiting for the deli guy to get finished with an earlier customer and I noticed that I was not next I was three from next. A woman came in behind me pulled number 20 out of the number dispenser and looked disgustedly at 16 displayed on the Now Serving display. She seemed in a hurry. It was lunch time and people working nearby often come in to pickup something for lunch. I pegged her for one of those people. I traded numbers with her. I told her she seemed in a hurry and I was going to do some other shopping while I was waiting for my number to come up.

I walked around the fresh fruits and vegetable area near the deli while waiting for 20 to get close. I got the other items I needed in that part of the store and found myself waiting while 18 was displayed as Now Serving. She initiated the conversation. I was only going to get cheese. I replied me too. I told her that I needed some Hoffman’s American cheese because I had planned on making macaroni and cheese. It had to be Hoffman sliced american cheese because in the past our daughter had related a story to Cheryl about our grandson Max telling his mom how he liked grandma’s macaroni and cheese better because grandma used special cheese. And why couldn’t she get some of grandma’s cheese to make macaroni and cheese with?

At our house we now call Hoffman’s cheese “Grandma’s cheese.”

She laughed and offered to give back 19 because she too was going to buy some Hoffman’s cheese. I replied no, that is okay I have plenty of time. I am retired. She told me that she was retired also and that she had worked in administration for Maple Knoll retirement community. She went on to tell me that she had cancer and was in treatment. So far, it was working. Her cancer was in remission.

I asked her if she knew Lynette Petersen, our friend that had recently passed away had worked as the executive chef at Maple Knoll. She had been retired from Maple Knoll for a few years. Number 19 had probably left Maple Knoll shortly after Lynette started there. She said the name was familiar but she did not work with her.

We exchanged other pleasantries and discussed other cheeses and how it seemed that Boars Head was taking over the deli case. She was not satisfied with Boars Head and I agreed.

But what would make her want to tell me about her cancer? That seemed a left turn in the conversation about retirement and its features. That seemed to me to be intimate information that one might not want to pass along to a total stranger. I was an empathetic face because I exchanged tickets with her?

Perhaps I was a friendly face and my kindness persuaded her to tell me about her current crisis.

I was an ear so she could expose her anxiety and worry without consequence and without concern about getting perhaps unwanted and unsolicited advise from family or a close associate. At that moment I was a help to her.

And she got her cheese before me.

A mitzvah outside of religion.

Carpe Diem.

I AM ENOUGH — Care for Parkinson’s

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Sometimes while caring for someone with a degenerative disease, we have occasion to doubt ourselves. To think we are the wrong person for the job. To think God must have made a mistake – surely someone else could do better. After all, we are so imperfect. Our loved one is not getting better. (We knew […]

I AM ENOUGH — Care for Parkinson’s

Whenever I am looking for alternative inspiration I read this blog.

Carpe Diem.

Last Night I Tried Something Different

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Last night was one of those sleepless nights for Cheryl. I think I am learning when she will have a sleepless night or sleep fitfully overnight or sleep for a bit and then be awake for a couple hours. And the next day she has no memory being awake or thinks she slept soundly.

She went to bed a little early at nine but she had complained of being tired at eight while we were playing Uno. I got her bedtime meds and we played another round of cards. (I am losing this marathon game.) She insisted she was tired, so, I helped her find pajamas and opened the bed. I kissed her goodnight and read my book for a bit. Nine o’clock is too early for me to go to bed.

I went to bed at about eleven and slept for about an hour. At twenty minutes or so after midnight, she was up. I thought initially for a trip to the bathroom but she was up with conversational gibberish about work and school and children. I left her to put on clothes and I put on a sweat suit to go read some more and wait to see if she needed my help. (Her motion is good and she seems steady with no hint of Parkinson in the middle of the night.)

When she came out of the bedroom dressed for work, I got her some cereal and orange juice. She also ate a piece of coffee cake. She wanted to look for the morning paper and pointed out to her that the paper would not appear for several hours. She seemed to accept that and sat back down to re-read the Sunday paper. After breakfast we played a couple more rounds of Uno. In conversation before and during our card playing I was able to convince her that we had no appointments today. After a while she decided that she was very tired again and we went back to bed at about 2:30 am.

In previous episodes like this I admit to being Mr. Cranky-pants. Rosie showed me a different way to respond to her at night. We both fell asleep quickly and the LOUD AND ANNOYING alarm clock woke me at seven for her morning meds.

I would like to report that she is okay today and I am rested but I am not. I am a little tired but coffee helps. She is still a little confused but not any more so than normal lately.

She has a rash that appeared a couple days ago. This afternoon I made an appointment with our primary care physician to look at it. Hopefully it is nothing other than hives. I wish I knew what new thing is irritating her skin. She does not complain about it. (Update: Shingles. She has shingles. In some people it does not hurt. Damn. Another reason to not get old.)

In writing this little piece I googled “a different way” in the hunt of an image to use as a header picture. This hip-hop song popped up DJ Snake. I am not a consistent listener of hip-hop music but much of it is very good and has a happy beat. This video is very creative.

A Different Way – DJ Snake, Lauv


Could you believe I could be different?
I’ll be the difference, I’ll lift you high
And I understand your hesitation
Our reputation, it’s no surprise
So let me redefine you
And you can see the tide move
Just like tears in the eyes do
And when you’re feeling alone
Oh, baby, I’ll be right here
Between the sea and silence
So breathe easy my dear
You can find sunshine in the rain

I will come running when you call my name

Even a broken heart can beat again

Forget about the one who caused you pain

I swear I’ll love you in a different way

I know that love is so unforgiving

You’ve been a victim too many times

And I’ll be the thread, hold you together

I’ll be forever, will you be mine?

So let me redefine you

And you can see the tide move

Just like tears in the eyes do

And when you’re feeling alone

Oh, baby, I’ll be right here

Between the sea and silence

So breathe easy my dear

You can find sunshine in the rain

I will come running when you call my name

Even a broken heart can beat again

Forget about the one who caused you pain

I swear I’ll love you in a different way

Hey, hey, hey

I swear I’ll love you in a different way

Hey, hey, hey

I swear I’ll love you in a different way

Source: LyricFind

Songwriters: Edward Christopher Sheeran / Ilsey A Juber / Jonny Mcdaid / Lindy Robbins / Steve Mac / William Grigahcine

A Different Way lyrics © BMG Rights Management, Kobalt Music Publishing Ltd., Sony/ATV Music Publishing LLC, Spirit Music Group, Universal Music Publishing Group

There is always something to learn on the road of life.

Carpe Diem.

Lunch with Rosie

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Cheryl went to high school with Rosie. Rosie went on to become a Sister of St. Francis. Cheryl went to the prom with me and four years later we married.

Yesterday after many scheduling issues we hooked up for lunch. Cheryl was moving very slow that afternoon. Rosie moved very slow with her and very gently held her arm into the restaurant and over to the table. In conversation, Rosie, the quiet calm and gentle person that she is with her own health issues, gently took Cheryl down a memory lane of remembrances from their high school years to their current time.

I slowed a bit and observed. Slow and gentle were Rosie’s movements, her companionship, her conversation. I learned something.

When we got home Cheryl rested for a bit.

I realized that Cheryl needs to go at her own pace. I always knew that she did but I did not always observe that pace or make myself slow to her pace. Cheryl’s pace is principally Parkinson slow with occasion spurts of Parkinson fidget and sprinkled with Parkinson frantic and a little normal motion and conversation.

She did not seem really very tired or ready to go to bed at what I think of as her normal ordinary bed time of 9:30 – 10 PM. I tried to exercise what I had observed earlier in the day and suggested we play a card game or work a puzzle for a while. She said let’s play Uno. We played with half the deck. She shuffled the cards and asked, Does everyone get seven? I said yes and she did not deal any extra players. Uno for those who do not know has a simple theme. Follow the color or follow the number. She could do that for about an hour or so. She began to notice on her own when she could not tell the difference between red and green. She declared herself tired about 11:30 PM and we got ready for bed. She slept soundly for several hours — all at her own pace.

Rosie taught me something. Let Cheryl set the pace. And if she is not around, think about letting God set the pace. Life is peaceful at Godspeed. Life at warp-speed requires quick reactions and having your shields up at all times.

Carpe Diem.

As We Get Older

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As we get older and this goofy damnable disease takes more from her I find that is more important to find those gems of experience and good times.

I did not realize how important that is to me and to Cheryl. Today was a pretty good day. I expected it to not be so. Cheryl slept little overnight.

Ordinarily when that happens she is tired and lethargic the next day or maybe that is just me. Today she got up and had some breakfast. She took a shower with no help from me. We went to exercise class.

I made dinner that evening. I made a Betty Crocker noodle thing that I had not done before. We had our neighbor Jane over to eat with us. Both Cheryl and Jane pronounced the recipe good, so, I will make it again.

At exercise class we were reminded that this evening the Parkinson Community Fitness is having a Beach Party theme party that evening. So after dinner and Jane returning to her condo, I reminded Cheryl of that and asked if she wanted to go. She said yes if it was not too late. It was not so we went.

At first she seemed iffy as the seven o’clock meds shook her well being for a bit but she came out of it okay and had a good time. As you can she by the picture, she had her smile on. We both had a good time and we even got to dance for a bit. (It was more like a sway. :-)) — Thanks to another Jane at PCF we have these great pictures on our Frameo electronic picture frame.

Cheryl and Paul, 2022

In both of these pictures, she has her smile on. Carpe Diem.