My search for grace and meaning after a former care partnering life with a wife who suffered from Parkinson's disease and dementia giving her a confused and disorienting world.
This person is the love of my life. My companion, my confidant, my support, my cheerleader, my lover, the mother of our children, the person who fills me up, the person where I am home.
Parkinson’s disease has stolen the soul of her being and it sucks. This is an old picture. We made a trip with friends to Grand Canyon National Park and Arizona. She saw the Milky Way one warm clear evening in the desert. We walked, talked, enjoyed some ice cream. It was a great trip. We thought one of many to be had in our later years as we grew older. We intended to savor life, enjoy the activities and antics of grand children and slowly fade away to the grand march of time.
I long to see this smile. This is one of the few pictures I have with Cheryl smiling naturally, not posed, not requested. Occasionally I would get lucky with my camera. Parkinson’s has stolen her smile and it sucks.
Early Monday morning 3/25/19 Cheryl experienced hallucinations again. The hallway became a beach. Kids without faces were running around. The bed sheets became liquid like water. Ceiling tiles squiggly lines like snakes. She told me that I had on funny clothes, but I had on jeans and a shirt.
She is sleeping now. It is 5:57AM. She just snored. She seems peaceful now.
What is love?
It can be many things. In the darkness of the night, perhaps it is patience. With little sleep comes paranoia, delusions and confusion. Love is staying awake to protect her, so she can sleep.
What is love?
Delusions come and are temporary. Love is a lifetime.
What is love?
It is simply putting someone else first. Yourself second.
What is love?
It is a mental state. It is more than physical. It is a devotion. A consuming ideal of dedication to another person’s well-being. Words provide little justice to the state of love.
What is love?
It is not that giddy giggly fealing inside when you see the one you love, that is prescient to the knowledge that you are both here, together in the state of love.
What is love?
Love is a collection of feelings too complex and too simple for an easy description. It is a communion of emotions and actions. It is bazaar in its entanglements. It is a devotion to someone not you.
It’s hard to get away from the fact that Parkinson’s doesn’t define your life and your spouse’s life when it consumes so much time. Today was a consuming day. Cheryl is oftentimes frustrated by the fact that what worked previously to help her feel better does not work this time. The principle medication Sinemet is only 60% effective. She has a symptom of being unable to release gas bubbles from her but without a great deal of effort.
Most of us burp and fart with ease. It’s a natural and normal activity. If it’s loud and offensive we excuse ourself politely and are slightly embarrassed. In Cheryl’s case it is painful, nauseating, and debilitating. All activity stops until the situation is releaved. On some days Coca Cola works to provide the relief needed. Some days it is Tums. Some days it’s laying down. Some days all three. It is consuming.
James Clear says you should write one line per day. Here goes. Parkinson’s disease is a humbling experience. Cheryl is dealing with it as best as she can. Her caregiver (me) is not dealing with it well. During her good periods it is easy to forget how it affects her. The switch from good to bad occurs rapidly enough that you can miss it . Thinking that you are still in the good period when she is not. Frustrating for both of us.
The end of 2018 – here is a collection of random jottings and notes.
After having spent some time reviewing old journal entries and notes it is apparent to me that I will never be a continuous writer. In fact evidence shows that I am not even a contiguous writer. The pages and ideas and essays I reviewed were disjointed pieces and parts of stories – as so is this.
A sample of these is here –
Sunday, August
08, 2010
This day is new.
It is the second day that I have taken simvastatin in the evening
before bed. I did some minor exercises when I got up. I slept
really well. Something is different. Attitude?
Friday, August
20, 2010
Tomorrow is my
birthday. I will be 61. How do I feel about that? I do not know…
What’s
happening in my life? Tonight I will stay at SWC until 9 pm. It is
my late day.
I have decided I think to learn Java. I need
some mental stimulation. I also need some physical stimulation. My
stimulator is getting old and tired. Lots of random thoughts come
out about that.
Friday, October
15, 2010
So as you can
tell I am not a consistent journal writer.
Yesterday series
of unfortunate events occurred in class that has caused me to write
my thoughts.
The first
activity was a “one minute” paper (quiz) which promotes students
writing their thoughts and then sharing those thoughts with other
students and the class. Regina Morris remarked that, “They were
going to have to interact with other students in the class even
though some students did not want to do that.”
During the second
activity, “a search and find” to answer the chapter questions and
email the answers to the instructor, Regina Morris allowed her inner
anger to boil over into action against the computer system that was
operating too slowly for her satisfaction. She threw the mouse on
the table and broke it.
As I approached
her to calm her other people in the room chided her for being
incomprehensibly angry at an inanimate object. The response was the
“ain’t nobody talking to you” retort and the inner anger easily
shifted external.
Regina was wound
up. She could not be calmed. She did not understand why the
assignment should be submitted in the method prescribed by the
instructor. After waiting some more time for Yahoo mail she left
class.
There was half an hour to go but class was
destroyed. Other students left.
The IT guy will
need to find a mouse for the computer.
Monday, October
18, 2010
What Causes Arthritis? A man, who smelled of liquor, sat down on a subway next to a priest. The man’s tie was stained, his face was plastered with red lipstick, and a half-empty bottle of gin was sticking out of his coat pocket. He opened his newspaper and began reading. After a few minutes the man turned to the priest and asked, ‘Say Father, do you know what causes arthritis?’ The priest replies, ‘My Son, it’s caused by loose living, being with cheap, wicked women, too much alcohol, contempt for your fellow man, sleeping around with prostitutes and lack of a bath.’ The drunk muttered in response, ‘Well, I’ll be,’ then returned to his paper. The priest, thinking about what he had said, nudged the man and apologized. ‘I’m very sorry. I didn’t mean to come on so strong. How long have you had arthritis?’ The drunk answered, ‘Oh, I don’t have it, Father. I was just reading here that the Pope does.’
MORAL: Make sure you understand the question before offering the answer.
Thursday,
November 11, 2010
If you put the
date
111110 it looks like 52 in binary… I finished the last day of our
last mid-start orientation at SWC today. Next year the college goes
to 6week sessions. Hold on to the ropes boys the fighting is just
beginning.
I sent everyone taking the test tomorrow a text
via Google voice.
Word Problems…
What is the
question asked directly or hidden in the words?
What do I (we)
know?
What do I not
know?
What do I need
to find out?
Friday,
December 31, 2010
The last day
of the year… Yesterday I learned that Bob Schmalz was terminated
from SWC. He is the guy that hired me. He was the Night Dean. I
guess since the school is getting smaller not as many admin people
will be needed to run the school.
In GED,
Michele has two classes to teach. I have two to teach. Stephanie
has none. Audrey is the admin person, the go to meeting person, the
face of GED to the administration that is upper management.
I suspect this will change more as we move
through the year. I think will look for other work as we go through
the year.
Sunday, July
24, 2011
Many months
have passed and I don’t work for SW anymore. In Feb. I started
back to work with Armor Metal. Maybe I can ride this horse to the
grave.
But I think,
so far, this is a good job, an easy job mentally. I get to travel.
I get to fix things and make people happy.
Saturday,
September 03, 2011
As I look
around the desk here I wonder where I am in life. This I is the
festival weekend at Nativity. Mom has-is nesting at Seasons
retirement community. Maybe this last is a good time maybe not. I
cannot get unfocused from cost. It is a lot $1950 + utilities/phone.
I will take
another chair over to her today. That way she will have more than
one to sit in when she wants to. It seems that she wants to have
more places to sit. I think she misses the clutter of her house.
The house is where I can get enough money I hope to take care of her.
The
out-of-town sibs are sometimes helpful sometimes not.
Joyce and I
fought viciously when we moved Mom. I have not felt that way since
childhood. It still makes me feel odd when I think about it.
I feel oddly
disconnected when I think about it
Saturday,
March 24, 2012
Well time does
fly!
Three weeks ago on Wednesday Ted – my boss at Armor, the guy that hired me was let go from Armor. To add stink to the fire I was conned into taking over his duties.
will try it for a while to see if I can straighten things out. In addition our group has gotten a new leader. A FOJ but that is his prerogative. Joe is pres. of it all. Rick is pres of us.
Heart felt thoughts…
I am going to
spend much more time with Cheryl. She has decided to collect SocSec.
early. I miss her when I am on the road.
1/1/2013
Well another
new year. I have decided to pay careful attention and lose some
weight. My goal is 25 pounds by 12/31/2013.
1/26/13
It has been a
few days. I think a lot about food. I have not formulated a plan.
Mom is in the
nursing section of the Seasons – the Courtyard. She’s not
happy. I’m not sure what she wants and she doesn’t seem to be
able to vocalize it. I think eventually she will need more help.
Boss man at Armor – Rick – seems to distrust my abilities. BUT I aim at good customer service.
9/16/13
What a
difference 9 months can make. Rick sometimes gives me the impression
he can’t do without me. Maybe it’s a scam.
Mom is off one of her BP meds.
I love Cheryl more than anything.
January 9,
2014
Where has the
year gone? I found this text hidden in my files:
It’s
amazing actually. We met on a blue moon. Look at the chart of the
moon’s phases below. It came from stardate.org. I looked for the
information after Cheryl and I took a walk in the park. The park was
Winton Woods. It was the place where we first met.
Moon phase chart – August 1966
Her memory is one of a big full moon. I don’t remember that. My mind was on other things that night. Finding a girl was not one of them. Being cool and one of the guys was. Oh well, a busy life and many years gets in the way of memory.
Her memory may
be better.
Regardless of
any of these thoughts we figured that we met on a blue moon. It is
now 2010. We are still together. Proving what? Perhaps it is
important for the first night to be special. It probably is for all
but they don’t notice at the time. I know I did not. Fortunately
Cheryl did.
It got me to
thinking; perhaps I should put down my thoughts before I don’t have
any more of them. And, I never did lose weight.
I have not had a cigar in two weeks. It takes
small baby steps and less beer.
May 19, 2014
I am not very
consistent at writing this journal. But, here it is again.
Gave up on the
cigar thing for now. I like them too much. I have tried to take
beer out of my diet on a regular basis. I think this will reduce the
number of extra calories that I take in. Maybe…
My car is
broke. Dan has had it since last Thursday. It has a bad instrument
panel. I also asked him to put on tires for me.
SO – as a
result of not having a car I rented one to drive up to Muncie for
Audrey’s first communion. BMW – fun to drive, uncomfortable to
ride in.
I have figured
out many nuances to the whole Java thing. Every now and again there
is a LITE that pops on.
That’s all for now.
November
27, 2016
Took a walk with Cheryl at Otto Aimleider park. One+ miles. She “ran out of gas” for the last 3 tenths of the mile. (so a little more explanation – Cheryl has been diagnosed with Parkinson’s Disease. Not a death sentence but annoying in the extreme.)
Prayer For Today – Lord, help me to be more accepting of the situation I have been given in this life.
November 29, 2016
We closed on the house. Ron and Amanda moved in yesterday. It was a nice day today. 62F or so. Cheryl seemed generally up all day. (Some days she runs out of gas easily.) Finished the latest Virgil Flowers book. Good job, John Sandford.
Blessed are the tweet makers for they are the makers of news and commentary and entertainment.
Blessed are the poorly educated –
Blessed are the poorly educated because Trump loves them.
Blessed are the Hillary voters –
Blessed are those who voted for Hillary Rodham Clinton for president for they now understand the workings and the purpose of the Electoral College.
Blessed are the Donald voters –
Blessed are those who voted for Donald J. Trump for president for they now understand the workings and the purpose of the Electoral College.
Blessed is the fourth estate –
Blessed are the writers and journalists of the legitimate media outlets for their writings have been restricted to those who read with purpose, thoughtfulness and altruism.
Blessed are the drive-by media –
Blessed are the pundits, commentators and talking heads of the cable news services for they interpret and filter the profundity and blather of the tweet makers.
Blessed is Rush Limbaugh –
Blessed be Rush Limbaugh for he hath warned of these days while rallying the conservative movement which had heretofore been constipated in a non-movement state.
Blessed are the retired generals –
Blessed are the retired generals and hawks for they shall be nominated for high office in the Cabinet. They will cause bills to be passed and create high drama as the Senators must now reconcile decisions and duties to their constituencies.
Blessed are the completely retired generals –
Blessed are the completely retired generals for after having served and served and served again they are free to fly-fish and enjoy other stereotypical retirement activities that were previously unattainable while pursuing high drama within the Senate chambers.
Blessed is the middle class –
Blessed is the middle class because few exist in it, many strive to attain it, fewer still have managed to rise above it, but all maintain that vision of the American dream.
How is it that folks who live in condo and other private communities feel that they can tell others what to do? There are about three basic tenets that all the religions tell us to live by. You know them – Do unto others… Talk to others… Pull up your own socks… Eat some pie each day.
If we generally lived our lives this way, what a beautiful world it would be.
It occurs to me that today is Laura’s birthday . She was so much younger than me. Never really a part of my life but near the end of her time on this Earth and unbenounced to me I began buying her lunch on her birthday. Then she became very I’ll with MDS a variety of leukemia. She’s gone now. I will never be sure how I feel about that.
Great day today. Cheryl was struggling for a while with her Parkinson’s but she is better now. Evening is best for her. Right now she’s exercising on the floor. Planning to make goetta later-probably tomorrow.