busy mind

Sunday Awake Day

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My cheesy grin

Today is Sunday. When I was here earlier Cheryl was dozing. She had taken her meds earlier and ate a little breakfast. Often when I come over on Sunday afternoon she is alert and  active and talking to someone else who is invisible to me. This day is no exception.

She let me sit with her and hold her hands for a few minutes. Now she has rediscovered a knitted fidget that has beads, a pocket, a loop and buttons. Cheryl discovered this shortly after she moved to Bridgeway Pointe and it seems to keep her interest for long periods. She is struggling with the loop to hook it over the bead and button.

The loop is the most fascinating thing. She loves to loop it around her fingers.

I take every opportunity to hold her hand.

Carpe hand holding Diem.

The Day You Are Born and The Day You find out Why

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The two most important days in your life are these two days.

I was watching a piece on the Sunday morning news magazine about a man who studies burrowing owls out west. He made the comment that I used for the title.

Makes one think. I have been thinking about it all day.

I have written many times before that I think my purpose for existing is to take care of Cheryl. I imagine that thought is prevalent in any long marriage relationship. We are partners. These days she needs a little more help than she did a year ago.

Many years ago I was the one who needed a little more help than I needed a year previous.

It is a partnership.

Carpe Diem.

Make a List

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Cheryl makes many lists. Early on when she was still working and Parkinson was not a friend, she made TODO lists for work, school activities and whatever was coming. These days with Sam’s disease (Samuel Parkinson) such a big part of our lives making a list is more nuanced. The next day one must remember what the list is about.

In May two of the grandchildren marked significant events in their education. One matriculated from university and will begin contriting to the business world after this family vacation. And one graduated from high school and has her sights set on university in the fall. Cheryl made a list to mark both events. We were only able to attend one of the graduations but both celebrations. The list worked but I had to remind her what her notes meant.

Vacation view

In another part of the family, preparation is happening for a family reunion style gathering with no funeral attached. Cheryl wants to be very involved although her organizational skills are mostly gone. Her head however is jumbled with ideas.

“I need to make a list!”, says she.

“Try to relax and enjoy the beach.”, he replied.

“I will after I make a list.”

Sam this disease of yours is so much more than we had hoped for in our lives. (sarcasm)

CARPE DIEM (dammit)

Longing

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Last night when I came to bed Cheryl was still awake. I asked like I always do if all was well. She replied that yes she was okay. She said, “I was thinking about Mom.”

“What were you you thinking?”, I asked.

” I miss talking to her.”

It was an incredibly lucid moment of which there are fewer and fewer. We talked for a bit about our mothers. She missed Elaine in that moment but she was not sad. She was thoughtful. Elaine is very present to her. Most days Cheryl wants to call her and tell her about what is going on. When we go somewhere, Cheryl wants to make sure someone is attending to her mom’s needs.

Day Three

I suppose that time for relaxation and thinking and memories of her childhood and past good times bubble up in her thoughts when she lets go of control for a bit. Last night was one of those. She was not upset. If anything she was relaxed and pleasantly fatigued from the day’s activities.

Lately I have been giving her a chance to talk about her thoughts as she goes to bed. If I read for awhile before coming to bed and she is still awake I encourage her to tell me what she is thinking about. Sometimes many anxieties are jumbled up in her head. Sometimes, like last night, she is thinking pleasant thoughts. Sometimes she longs for Auld Angsine. (Sp?)

The crabcakes were good and it was breezy on the pier. The shore birds where grabbing any of the small bait fish that they could find.

Today is a new day.

Carpe Diem.

Leading Indicators

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She did not sleep well because of thinking about anxiety for family and  staying up late – past 11. She was off most of the previous day. More sleep into the morning is impossible.

All indications of the day to come?  She is very tired. At 8:30am, I help her back to bed for a nap.

At 10:15am, oh what a beautiful day! She is awake and only off schedule for meds by 15 minutes.

Interesting conversation when she came out — Isn’t it amazing how much this place looks like ours? She said. Whenever I come out on this floor I’m amazed.  All the same pictures like we have are hanging up. I agree it is amazing. I say it is very much like our old place.

In our old house we had two floors.  She still uses this terminology and I do not correct her. Maybe I inadvertently promoted two floors in her mind? She complains of hunger but is unsure of what will satisfy that hunger. I suggest a couple of the cookies we made a special trip to buy yesterday. She brightens and says yes to that idea.

She is improving while I watch her eat some cookies and OJ.  Working the puzzles in the newspaper is her favorite awakening activity.

She seems okay for the moment.  I will go back to my baking. When I come back from assembling the fruit pocket with yellow crumb topping the conversation turns to Catholic church and thoughts of a female priesthood.

She ponders the future of any of that and compares it to our used-to-be Sunday dinners. A reminiscent memory of times past brings forth tears of regret and sorrow over experiences lost to time. At our old home – a five bedroom house with plenty of space for kids to roam and adults to sit and converse around the table while waiting for digestion to make room for dessert – we often had many for Sunday dinner. Those days are happy ones. They are fond memories.

These days of a smaller place and dealing with Parkinson’s disease do not allow for that in our home. (It is perhaps time for the children to start that tradition but they seem uninclined to do so.) It is understandable. Their families are young and vibrant. Many distractions occur on the weekend. Feeding old folks is not one of them.

The oven beeper rings out its merry song! The baking is done! The baking is done! Come get the baking. It is done. (smiley face) Here is a picture. The only thing left is the icing but they have to cool for that to occur.

Cherry pocket Coffee cake: undefined my drizzle got away from me.

I like to bake. On another part of this blog I published my Cinnamon rolls. I could go through in laborious detail how I make these coffee cakes. They have become Cheryl’s favorite. I make them often.

In the midst of this scribble my sister-in-law in Florida announced she is negative for Covid-19. That’s really good news but her doctor believes she may have clots developing in her lungs. That is ominous.

She walks by to announce she is taking a shower to get cleaned up. We have our listening for thumps segue and she goes to get cleaned up. All was going well again, but, alas it was time for the 1PM meds. In fact she was late taking them.

This has turned into a rambling account of a day in the life. I did not intend it to be but this day, for whatever reason, is hard on Cheryl. I think that even though she knows there is little she can do for her sister from so far away, she is very anxious about her.

These two women slept in the same bed as children. Often in Cheryl’s dreamlike state in the middle of a semi-dreaming world she will see her sister. She has several times asked me in the morning if Jan had gone home or when did Jan leave? Jan is part of her hallucination that occurs often in the early morning brightening gray light. Their connection is strong through PD and yet their symptoms and treatment are so dissimilar.

We are able to take a walk at about 2:30PM. I admire her persistence. It can be hot in Ohio in July. So we take a walk of about a mile around this little park nearby. It is slow going but we get through it by resting in the shade occasionally. The reward is a stop at a nearby creamy whip ice cream store.

We have decided on waffles with fruit topping for dinner. That was going to be breakfast, then lunch. It became dinner. (smiley face) Things take a little longer in the parkie world. Sometimes you get waffles for supper. Other days not. She is laying down again.

No more pertinent updates from the Florida chat line. The text messages have gone quiet for a while. Perhaps we can sup at 6PM.

Time to get started just in case it happens.