Sunday – 17 days into IT

I started to write this several days ago as a way to describe daily routine. Like, anyone wants to know about our (my) daily routine. (smiley face) Nevertheless, routine takes on a whole new meaning when you have little social interaction with others during the day. In my case, I will make this all about me, lack of that other contact seems to cause me to focus on Cheryl and her struggles during the day.

I have been taking very specific notes about her illness, lack of illness, med schedule, eating schedule, things going on around us.

I have to note here that it is easy to “get on each others nerves”. Part of that is I can be a pain in the backside when it comes to health issues for Cheryl. Keeping her from getting any upper respiratory infection is paramount to her health. Sometimes she develops a dystonia in her chest or maybe an air bubble in her stomach that she can’t release from her stomach. Her complaint is – I feel like I can’t breathe. Not a good thing to say in a hospital ER.

On Friday we had the new windows installed. Nice. On to the search for window treatments satisfactory to us both. Not wanting to fight the lets go look somewhere argument which is winnable but not in a satisfactory and gentle way, I have ordered something for my office which might suit me if it fits. This is a way to try stuff out without wasting a lot of time in a Covid-19 ridden big box store with almost the right thing. Almost the right thing I can get from Amazon.

In the early couple days of the self-isolation I was concerned with the size of my larder and the stocks therein. I should not have had that concern. Even though our place is much smaller and I have taken over many of the cooking chores, we still tend to buy things with the idea of – let’s make that – and then we get close to eating time and decide to eat out. I imagine that is pretty common among older adults. As a result, the larder was not bare when the toilet paper rush started.

I was disappointed that the ice cream case had been devastated by the TP hoard at our local IGA. Apparently they do not fancy frozen yogurt.

I started my notes on the first full day of Spring but they are sketchy notes and as the day wears on I become interested in other diversions so my notes are more cryptic and open to refinement or just abandoned for other pursuits.

March 21st

  • up @ 7AM
  • cooked pancakes
  • felt dizzy, laid on floor about 8AM-8:15
  • shower about 9:30am
  • 10 meds
  • 10:45 am lay down complaint – chest tight
  • up 11:15Am
  • later I noted Birthday cards – okay

When I read this list and reflect on it, it is a typical sequence of activity for the first three hours of the day. This was a Saturday so pancakes are special on the weekend. This tradition goes back 50 years or so in our marriage. I remember that after about 35 years or so the electric skillet, which was a wedding present from someone, died and a crisis developed. A new electric skillet was obtained but has never been precisely satisfactory. (sad smiley)

The dizzy feeling used to occur without warning. Once she collapsed sideways and fell to the floor on top of the soft drink bottles that reside there and did a number on her rib cage with the bottle caps. The lightheadedness does not occur with consistency but it is not atypical either. We know what to do and do it. Recovery is fairly quick.

Taking medication at 10AM and having a reaction to it thirty-five to forty-five minutes later is typical if it occurs. That reaction is not always present, but when it occurs, thirty minutes recovery is the usual course.

Cheryl has taken over the birthday card activity from her mother. When Elaine passed away two years ago, Cheryl decided to keep up her mother’s tradition of sending birthday cards to the nieces and nephews, grand children, great grand children and others. It is a big deal to her. every month we go to the Dollar store to get cards. Her mom liked the cards at the Dollar store so that’s where they must come from. (smiley face) The names and dates themselves are contained in an Access database which is the kind of work that Cheryl used to do. I should note here that this type of computer activity, albeit minor, is becoming more confusing to her. This confusion is exacerbated by the fact that as her movement is affected by various dyskensia motions and dystonia non-motions the computer mouse and software react to those and stuff moves around in the file structure and software links. (angry smiley)

March 22nd

  • She got dressed in the early morning (12 – 4AM)
  • 7AM – BR
  • 8AM – sleepin
  • 9:30AM still snoring – I woke & snoring 2 min later
  • up at 10AM (7am meds)
  • Frig rolls & OJ
  • 10AM meds at 12
  • listening to old albums
  • 12:20PM feeling OK
  • snack lunch
  • 1PM meds at 2PM (lay down 30-40m)
  • 4PM meds at 4PM
  • Played Scrabble CH/wins – she seems okay, movement & mind; no stomach
  • 2 Sin @ 2PM (not 2 1/2)
  • 10PM meds @ 11PM
  • working on thread organize
  • bed 10:30PM

I did not note what we had for dinner. Perhaps it was not of great note. But after getting up in the very early morning to take a shower – this has happened before – she was very tired and slept in. She probably took a shower in her sleep and eventually awakened and returned to bed. She told me this later in the morning, so I made notes. She does not remember where she was getting ready to go to. She sat in the kitchen for a bit and looked at the table cloth that she had modified to fit the table on Saturday. It comforted her that it was complete and on the table. She sat for a bit and returned to bed.

I awakened around 4AM and noticed she had changed her clothes and was awake. She told me she thought she was going somewhere. We held hands for awhile and fell asleep again (or I did.)

In the later morning when our alarm went off at 7AM, I arose and turned it off. She said, “Thank you” as she often does. I went to make coffee for myself. She stayed in bed. I thought she might since she had been up in the early morning. I checked on her several times but lately I err on the side of more sleep if I am sure that she has been up for a couple hours in the middle. She finally got up a little before 10AM.

Betty Crocker refrigerator cinnamon rolls or a coffee cake from me or a local bakery is another treat we often have on Sunday. We watch the recorded version of CBS Sunday Morning and enjoy our treat. I drink coffee. Cheryl drinks tea. Its a relaxing morning overall.

Cheryl has planned to give a bunch of her sewing supplies, scraps, thread, etc to Anna’s youngest, Virginia. Virginia has shown some interest in sewing and other crafts.

So, there you are, a couple typical days in the life. These are weekend days at the beginning of the whole Covid-19 pandemic sit-at-home-and-wait thing but it is pretty typical. An extra virus has not changed it much if at all.

Parkinson’s sucks, big time.

Feeling Groovy / not Groovy

How do I feel today? I write little scribbles here because it is a kind of therapy. If I find a little story in my head and I think I can tell the story. I do. I do not concern myself with who reads it. It is written for me.

Lately I have been listening to Simon and Garfunkel albums. Songs from old vinyl and from Alexa. This is the music of my high school years. For whatever reason, recently, it has become the background song track of my life.

It strikes me as interesting how many of these songs I know the lyrics to. It is also remarkable how that can lift my spirits. The 59th Street Bridge song just went by and I asked Alexa to repeat it. That is a super cool feature. It reminds me what a wonderful and amazing world we live in!

Feeling groovy about that!

Covid-19 virus, kungfu flu, Chinese virus, novel corona virus, whatever you choose to call it or slander it with, it has caused virtually everything to stop. In retrospect, Parkinson’s is good training for that. Much of our “running around” life went away with Parkinson’s disease. Lots more planning is involved.

The sound track plays “Bridge of Troubled Water” and makes me mindful of how much more intimate and involved our life has become as Cheryl deals with her symptoms and I help her to do so.

When you're weary, feeling small
When tears are in your eyes, I'll dry them all 
I'm on your side, oh, when times get rough
And friends just can't be found
Like a bridge over troubled water
Sail on silver girl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
... Bridge over Troubled Water  - Simon & Garfunkel

These words, I did not copy them all, are a perfect description of the role of a caregiver. I actually teared up while Paul Simon (Alexa) was singing a moment ago. He makes me think about the importance of this job that was given to me above all my objections.

But not feeling groovy about that.

The first thing I remember
When you came into my life
I said I'm gonna get that girl
No matter what I do
Well I guess I'd been in love before
And once or twice I been on the floor
But I never loved no one
The way that I loved you
And it was late in the evening
And all the music seeping through
... Late in the evening - Paul Simon

I guess your journey through life can be happy without love for another. I am not wired that way. Each day with Cheryl is a new and valuable experience. More and more I recognize that to be an undeniable truth. It is, however, very hard to watch her deterioration.

But, all in all, Feeling Groovy. This is a great way to express my current state of mind.

Forever My Love

Words of love
Softly spoken
Like clouds above
Drift away
What shall I say?
To let you know the way I feel
Should I cry out loud that love is real?
Or simply reveal
Forever my love

Time alone will tell us
Lovers born in May
May grow bitter and jealous
Faded and gray
What shall I say?
It’s not another lovers game
It doesn’t seen to have a name
It changes and remains the same
Forever my love, my love

Yesterday’s projection will never really know
But tomorrow’s recollection will surely know
It was so
Between us
Ain’t no other way
Time has seen us
Day after day
What shall I say?
That isn’t in the way I act
That will carry through the years intact
I’m lookin’ forward to lookin’ back
From further in down the track
Together in fact
Forever my love, my love

She caught me by surprise today. Telling me about this song by songwriters Carly Simon & James Taylor. Lately occasionally in the midst of the corona virus catastrophe, she’s been playing old albums as she puts her office/sewing room in some sort of order. Various moods float through our house.

She also found this picture of us on our wedding day. (Goodness, we were thin then!) She made that dress. It was a wonderful day that I have little memory of. That is sad, is it not? I did not keep all the minutia of that day in my heart as she did. I remember it was HOT.

We were married in late August in Ohio. Long enough ago that A/C was advertised as an important feature of bars and other gathering places.

Today, almost 50 years later, I reflect on that fact and the wonderful times we have had. And look forward to the years we have left and I wonder if I am able to keep the minutia in my heart as her ability to do that fades. I pray that I can. To help her remember later and never correct her recollection, merely help her weakened mind.

Forever my love. That was our vow to each other. Forever. That is love. Her disability now is the reason we were brought together then. He knew she would need me. For that I am grateful. I did not think I would be when we first learned of the Parkinson’s but with each passing day I realize the gift He has given me.

A Kiss to Awaken

I kiss her awake in the morning. It seems kinder than other ways. A little smile appears. Is it working? I ask.

The smile becomes a smirk. No. She replies. I leave to return later and try again.

She sleeps some more. I know that because I hear gentle snoring from the other side of the bedroom door.

And then I hear water moving through the pipes. She is alert . Getting cleaned up a bit.

The door opens. She is up. My heart leaps. It’s a new day. A new beginning with less sun than desired perhaps but bright nevertheless.

I smile and plan breakfast.

Wolf Spiders…

Wolf Spider eyes

I am no expert on spiders. For that expertise I defer to my biologist teacher daughter. But to my wife I am mighty.

I call all of these fuzzy guys wolf spiders. I really have no idea if they are or even what habitat wolf spiders seek out. Occasionally one of these guys will appear in the house.

Tegenaria domestica

Yikes, eeeekk, yuh, yuh… And I spring into action. Cheryl is not able to co-habitat with domestica anything. It makes me smile and she gives me the slipper that she is getting ready to use to send it to the great beyond. She does not smile. I select my weapon of choice from the box of Kleenex on the counter. I scoop it up. It makes a pleasing crunch as I press down with my thumb. Ugh, she replies.

Lots of things fascinate me, at least, for a short time. I do not know much about spiders. In Kentucky many years ago we stayed for several days at Lake Barkley Resort Park in the lodge. Those spiders are industrious. They made these beautiful circular webs every night near the walkway lights.

The Web

This is a picture of a similar web I stole off of the world wide web. Every morning one or several of the housekeeping staff walked around with a broom or dust mop and knocked them all down. Every morning they were back!

Parkinson’s disease is like this little spider. Every morning it scrambles off to the side while some well meaning worker cleans up a perceived inconvenience to the residents. Overnight the meds wear off. The next day they are built back up. Towards the afternoon and early evening the web is rebuilt and the dopamine levels are acceptable.

All is well for a while.

Songs and meaning

You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
Every gambler knows
That the secret to survivin'
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for is to die
in your sleep   ... Kenny Rogers (the Gambler)

Who knows why songs appear inside your head? I did not shave today but as I was staring into the mirror brushing my teeth, I began to think, I could grow my beard and look like my brother-in-law or a friend of mine who both resemble in some ways Kenny Rogers the singer. I smiled to myself and the Gambler’s words popped into my head.

So, here I am, listening to Kenny Rogers on Alexa’s mix tape and thinking about “every hand is a winner and every hand is a winner and best that you can hope for is to die in your sleep”. That is a truly a sad lament. A complete loss of hope for the future but it speaks to low places that we find ourselves occasionally in life.

Parkinson’s can be a low place. It does not have to be so.

The switch to Daylight Savings time – there is an oxymoronic statement if there ever was one — is hard for a parkie. So are time zones but those one must travel through to get the unwanted benefit of messing with the meds schedule. But I have diverged. Today after having a very slow start on this second day of EDT, a day that is also warm in Ohio under a worm moon, we went for a walk in the park.

It was an animated walk. Although we are 12 or 13 years down the Parkinson’s road and she is recovering from the time zone change, she is feeling good today. We are walking not far from a neighborhood she knew as a child. The discussion was about grandma and grandpa Pabst. They lived on Pearl Street and had a dog named Moxie. The kids were afraid of the dog. It barked a lot and they sat very still on the couch until great grandma Pabst put the dog into the basement area.

I have heard this story many times over the years and in the past I have shortened the telling by saying that I have heard it before and using commentary and body language to show disinterest. Today I did not. I asked questions to get more detail. After our walk, we drove over a couple blocks to the street and drove around the neighborhood in hopes of jogging a memory or seeing the house. It is a day that she needed to conjure a childhood memory and turn it over and over to examine it. Study it in detail.

We came home and she got out pictures. Very old pictures contained in an old album with the covers deteriorated and broken. It is a good memory of people who are special to her. She was 20 again for awhile. She was telling me stories of her family as though they were still there. For her they are.

Seeing her perk up and become excited to show me something lifted me away from the place I was after listening to Kenny Rogers’s sad end of life lament — “life is hard and then you die.”

All in all a good day.

Black Underwear

In my new life as caregiver, I have developed several routines. Friday is laundry day. In the “delicates” load was a pair of black panties and a black brazier. And then my mind wandered off into the weeds.

When we were much younger and it was early in our marriage, I let slip to her that black underwear was for me a big turn-on. Through out our younger lives she kept this in her heart. She would let it be known through certain hints, glimpses in the mirror or direct conversation that this was a good night for what she referred to as intimate time.

On various date nights or other occasions the clue phrase was “I am wearing black tonight”. Somehow the wine in the restaurant tasted better. The conversation was closer. I quit seeing the surrounding tables. I quit hearing the surrounding conversation. I guess pheromones intermingled with testosterone does that.

Sometimes I would initiate the contact. Is this a black night? No, she responded, I thought red would be more appropriate. Well it was! It is hard to go slow and stay with your partner when she is wearing black underwear. Much more so when she is wearing red. Holy cow, I miss those days.

I guess she does too. A couple days ago, I do not recall where we were off to, but I was pecking away at this computer and she, after finishing her shower, stood in the doorway of my home office wearing only the two items that were now in the load of laundry I am folding to put away. “I’m wearing these today”, she announced. My brain went spiraling off into the weeds. Holy cow I miss those days. Sorry. I am repeating myself.

Even now I am distracted by those thoughts. Our intimacies in many ways are much closer now even though less sexual in nature. Love is a lot of things. Only a small part is sexual.

It is hard to express how much closer this journey has made us. It is hard to express how this illness has opened my eyes to things in her that I did not notice before. I am more aware that my words can hinder her. I am more aware that my words can hurt her.

This is an eye-opening experience for me as well as her. I have taken on many of the domestic day-to-day tasks – laundry, cooking and others. We have hired out the cleaning to my niece who has her own cleaning service going. We moved into a condo situation so that lawn care and building maintenance is contracted. I am amused by the fact that I have become somewhat protective of my own methods and how easily I become annoyed when she or anyone else critiques my method.

She takes care of me as much as I take care of her. I miss the younger us. I miss the crazy running around chasing kids sporting events. I miss the, “I’m wearing black tonight.” And the opportunity to make more kids. But I really love her in this moment. I just hope I am able keep caring for her and I as fear for the worst outcome, and cannot fathom why my feeble brain goes there, I realize how deeply I love her.

The black underwear still looks good.

Distraction from Diversity

A break up between lovers a saddening, maddening mess
Talking without listening, hearing but unheard
Love let loose to fly without another word
to return from whence within the heart it
escaped to be kept in darkness for the next
A separation of friends a saddening maddening mess
Honesty without charity, unacceptance of uniqueness
Relationship neglected and abandoned with ease
relationship nurtured with love, kindness, empathy, vision
Glad hearts darkened by loneliness and isolation
the light saved for the next
A chronic illness is this maddening saddening mess
acceptance without explanation of symptomatic defeat
failure of love to respond without bias or as unrequited
to her needs without admonishment or regret
a deep need to engender her abilities though fewer
encouragement to succeed without overwhelming
assumption of control to rest for the next
Giving care and help is a gladdening heartening task
done by one for another and back again as the cared for
returns the care and kindness shown.
Love is this, to be shared among both 
or all for the next and this returned 
to take part in and part of the care and love

Caregivers Prayer (with additions)

By Edie Kynard

Lord,as we face this day together, please help me to handle each moment with strength.

May my attitude be positive, my hands gentle when administering help and my heart full of compassion.

(Help me to understand that I do not know all the answers, that only she knows how and what she is feeling.

Teach me to be supportive when necessary, to be the explainer when asked, or to be the leader if called upon by her to do so, but instill in me the patience, wisdom and empathy to determine which of those is called for this time.)

Please lift me up when I am down, show me the humor in awkward situations and nudge me when I lack understanding. (Do not make your nudges subtle for I am male.)

Send me aha moments for us to grow through, messages from above for us to share and empathy so that I can step into his (her) shoes and readjust my attitude.

I’ve asked for a lot Lord, but the most important is my request for forgiveness when, in human error, I tread upon his (her) heart.

So please …keep my feet planted in solid faith so that I can sow seeds of kindness and not weeds of grumbling toward the many tasks at hand.

Fill me with wisdom so that when we walk this journey together we don’t get lost along the way.

In Your holy name, Amen