Déjà vu - Caregivers
I recently stumbled upon a Caregiver’s group on Face book (Caregivers
Support Group for Myotonic Dystrophy) and felt compelled to join it and at
first I wasn’t exactly sure what prompted me to do it. I certainly wasn’t familiar
with this particular disease and I’m not presently facing the challenges and
pitfalls of caregiving, but I still think about my stint in that caregiver role.
Caregiving is caregiving, no matter the situation and this brings back old
memories, stirring those of mama…daddy…granny. It’s hard to believe that it has
been eleven years since I lost both mama and daddy and ten since losing granny,
the toughest eleven month span of my life. When I think about the term
caregiver I can’t help but smile. The corners of my mouth are not turning
upward from remembering my role at the helm but envisioning mama’s. Her vow
still haunts me, ‘I will not place Thomas or Mama in a nursing home.’
Bad nursing homes have certainly given good ones a bad reputation in general,
but then, that’s another story. One thing for sure, vows were kept, promising
actually. I don’t regret following her wishes but I still regret she made me
promise, taking that choice out of my hands.
For those of you who haven’t read my journey, seen the
underbelly of careless giving and come away with a better understanding of how
I had to do it my way, then this might sound like rambling gibberish, a man
still coping with his demons, but I assure you it is anything but that. Quick recap
for those who haven’t read The Caregivers Son, Outside the Window Looking
In, my memoir is not a how to for caregivers. I had no targeted
audience when I wrote it. Heck, I had no aspirations for ever publishing it.
Mary Elizabeth Winn was my mama, an only child as am I. When my daddy’s
illnesses reared their ugly heads, Alzheimer’s and Parkinson Syndrome, sending
his life of retirement bliss spiraling downward into a pit he would never
ever emerge, mama decided then and there that she would care for him at home.
He was after all, her husband, my dad and she certainly had a choice in the
matter. She embraced her role, caregiver extraordinaire, had it down to a tee,
putting his life ahead of hers literally. She had been healthy as a horse all
her life and fit for the job ahead.
Mama was ill prepared for the real journey though. No
caregiver who takes their role seriously can ever grasp the concept. The
next half dozen years would take its toll on her, my daddy eventually spending
the last few years bedridden, unable to do anything, including communicate his
feelings, his thoughts, his likes, his dislikes. He was trapped inside a shell.
He was fed what his caregivers wanted to feed him. He was moved about from room
to room when the caregivers decided that was what they wanted to do. He was
forced to live, to survive, his home healthcare nurse and friend making sure
his life, such as it was, remained a healthy existence. He was loved whether he
wanted it or not. Choices, he had none, other than live as he did or face the
alternative. Ironically given the conditions inflicted upon him by the
ravishing diseases his vitals were that of a healthy person. Go figure.
Daddy would look at us, follow us with his eyes and even
attempt to form words on his lips. Sadly in his bedridden grip, he couldn’t
move or articulate. I often wondered if we were doing the right thing. How
could we possibly know? The intent was to make him comfortable, feed him, clean
him, see to his bodily functions and watch him simply exist. Demeaning, maybe,
but that was my perspective. Possibly he was just happy to be alive in any
shape or form or maybe he wasn’t. I certainly can’t make that call now any
better than I could back then. Second guessing really serves no purpose and
isn’t relevant to where my head is right now. It was but a passing thought.
Thinking about stuff only leads to thinking about more stuff so it seems.
Who would have ever thought that the super caregiver, my
mama, the rock, would have gotten diagnosed with stage four pancreatic cancer
just days after Christmas 2003? After all, she had been the one who had decided
to keep Thomas Jefferson Winn, my daddy and my granny, her ninety year old
mother, Ruby Bowie, in her home and out of any assisted living facilities; not
that they couldn’t afford it but because she wanted to do it. The caregiver now
required the services of a caregiver too. An only child and his wife got a
reality check, not because we had to but because it was the right thing to do.
Trust me, I am not singing my praises by any stretch. I had flunked royally as
the caregiver supporter. My wife had done a much better job and had been more
supportive in that role than me. That old what
goes around, comes around saying never screamed louder.
Mama lost her battle with cancer three months after we
received that awful news. She died sitting up in her single bed, in her
bedroom, me holding her in my arms as my daddy watched from across the room in
his hospital bed. Her last words to me before taking that last gasp of breath,
‘I love you sweetie.’ Four words I will never forget. We think a blood
clot took her from us, actually saving her from the likely suffering ahead from
a painful disease. Daddy had never been more alert as he had been watching his
wife pass before his very eyes, unable to even say goodbye; at least not
verbally. Mama had been the caregiver but I in my substitute role ironically had
completed the worst part of the journey, watching HER die. Little did I know
the worst was not over by a long shot?
Most people, including myself, don’t quite grasp the entire
scope of the caregiver. Let’s just say I didn’t when I was on the outside
looking in and only in the sub role. A caregiver can often give up everything.
Lost in the shuffle by those just visiting or staying on the sidelines, is the
reality of the sacrifices the caregiver has made, putting their love one or
patient first, themselves and their health second. Mama had basically ignored
the warning signs her body was screaming at her, putting daddy and granny
first. Such is the life of most that are caring for others unable to care for
themselves. Mama might still be here if she had seen about herself before
it was too late. Early detection is the best prevention, right? Caregiver
support is a vital peace of the puzzle. You cannot walk in those shoes 24/7 or
YOU WILL pay the price. I confess. I didn’t initially get that either.
Lessons learned too late can be costly. Lessons never learned are inexcusable.
I had to do things wrong first to learn how to do them right.
Daddy died three months later while under our care. Doctors
and home health care nurses had warned us that in his current condition that
aspiration was always a possibility. That’s why we took every precaution when
it came to feeding him his pureed meals. When it struck like a lightening bolt,
we were ill prepared just the same. Watching your daddy choke and not being
able to stop it is a helpless and hopeless feeling. Frantically my wife and I
were trying to contact home health care, the ambulance, anyone who could rescue
my daddy. Time is never on your side when these things happen. I held my second
parents’ hand in his bedroom, across the room where my mama had just died three
months prior and watched him breath his last breath. There were no words
spoken, no formal goodbyes; he was just gone within in precious minutes.
Promise fulfilled, daddy as mama, had not gone to a nursing home. An only child
in three short months had lost both parents. I could have never imagined a
worse scenario. With every life is a promised death. These were just way too
soon but aren’t all of them?
Then there was granny, 92 years old, having witnessed her
only daughter and now her son-in-law perish before her elderly eyes. The
matriarch of our family had outlived many and it was hard to fathom just how
she was going to cope after losing mama and now daddy. Cope she did,
defying the odds. Her mind had always been sharp, even after her body had long
ago failed her. Five or six months after my folks death I had an opportunity to
start a new job. This would require us moving from Abbeville
S.C. to Myrtle
Beach , 4 ½ hours away. Would granny consider going
with us? We were her caregivers now. Long story, short, she did relocate with us,
moving away from where she had lived her entire life. Even before the move we
had noticed her health declining, bits and pieces, here and there. I’m sure the
heartfelt burden of her only child’s death weighed heavy on her heart and her
mind, faced with the fact she had outlived mama and now daddy. Two months after
moving to Murrells Inlet she gave up her good fight and joined the others in
heaven. My aunt, my daddy’s sister said she completed the journey to the beach
just to make sure I was okay and then her job was done.
Eleven months and now they were all gone. Little by little
I sank into a very dark place, oblivious to the fact that I was tittering on
what might be described as depression. My wife would later say that I had never
really had the opportunity to properly grieve over mama’s death before being
faced with daddy’s and then granny’s passing. Mentally it was just too
much in too short of time span. Everyone has to face these consequences in
their own way. For me, I turned to writing. I’ve always seemed to be able to
put to paper what I can’t express and share openly. So I wrote and I wrote and
I wrote, bleeding my roller coaster ride of emotions on my laptop. I did this
for me and nobody else. Guilt, grief, happy times, sad times, could have,
should have, didn’t, I pretty much let it flow, and in some cases taking myself
to the wood shed over poor decisions and uncaring choices. Selfishness, self
centered, living life for me had been a piece of cake, that is until I treaded
down the path of the caregiver. Sometimes you really do have to do things wrong
to finally get it right, rung like thunder in my ears and my heart.
I called my journey, my self assessment, my beat me down
and pick myself back up, The Caregiver’s Son, Outside the Window Looking
In. Nope, I was not an accomplished writer, not an author or had
ever published a single stinking thing, or had I ever tried to publish
anything. Like I said, this was for my eyes only and remained at such for
nearly eight years. Fate will find a way. Purely as true chance, Bob O’Brien, a
neighbor I had never met, showed up at our front door in 2011 holding his book,
The Toppled Pawn in his hands. He looked at me. I looked at him.
He finally admitted he had expected to see the previous home owner, not
realizing that we had purchased the house. He apologized saying he had just
wanted to show that guy that he had published his first book because apparently
his ex-neighbor had shown some interest in writing. I told him I dabbled in
writing. Bob asked if I had a manuscript. I told him I had ten but no one had
ever read any of them. He placed his hand on my shoulder and said ‘son we need to get you published then, I
just started my own publishing company.’ You can’t avoid signs from above
can you? I looked at my wife saying what are the odds?
I know what you’re thinking. I then chose my caregiver book
and published it. Nope, instead I picked a fictional novel, Road Rage
as my first. I published my very first book at age 57 ½. I next published Dark
Thirty, my fictional novel about Bullying. In 2013 I was about to publish my 3rd,
North of the Border, a sequel to Road Rage, when I
mentioned to my wife my caregiver story. Again, no one, including her, had ever
laid eyes on it. I wasn’t even sure I was ready for even her to read it. After
all, it revealed me inside those pages, a ME with emotions, thoughts and
so forth that I had never openly shared with anyone. I eventually consented.
After she read it she told me I needed to publish it. She said she cried, she
laughed, she relived much of it. I ended up publishing it along with my other
choice, a two-for so to speak. Friends, family and strangers loved it,
experiencing the same waves of emotions.
Originally I had no targeted audience other than me. I
thought after publishing it, it would serve as a good tool for caregivers and
actually I dedicated it to the caregivers, the true unappreciated heroes. I was
wrong. Not to say that those who haven’t walked the caregiver path can’t relate
and fully understand my journey, they certainly can. If I had a mulligan I
would say it was better targeted at the caregiver supporters, those who don’t
understand what it takes to be a caregiver and what the caregiver really needs.
Many have said this is my best work, their favorite. It came from deep down
inside and not one of my fictional spins. Did it land on any best seller list?
No, I never expected it to because I never expected anyone to ever read it. For
those who do take time to read it, I hope it opens their eyes and their hearts.
It’s no how to book. It’s more of a how not to, an awakening, one
man’s way of dealing with life the only way he knew how to, and yes, I had to
do it my way, the good, the bad, the ugly and then the right.
For those of you who don’t know them, that’s mama and daddy
on the cover. It is the last best photo ever taken of them, my daddy already
suffering from the diseases that would eventfully take him down and mama
enjoying her last ever cruise with him. It challenged him, her and us by taking
them on that trip but it was what they loved in life to do. Enjoy them while
you have them. Poof, they can be gone in a blink. An only child continues to cope
nearly eleven years later. The difference is my memories are filled with joy,
laughter and very few tears now, every memory precious as they all should be.
This was probably my blog to top all blogs but as mentioned, writing about it comes
much easier for me than talking about it. For every THE END there is
always a new BEGINNING. I’m creeping up on 62. The journey is never over. I
love and miss you sweetie.
Myotonic dystrophy (dystrophia myotonica, myotonia atrophica) is a chronic, slowly progressing, highly variable, inherited multisystemic disease. It is an autosomal-dominant disease.
It is characterized by wasting of the muscles (muscular dystrophy), cataracts, heart conduction defects, endocrine changes, and myotonia.
There are two main types of myotonic dystrophy. Myotonic dystrophy type 1 (DM1), also called Steinert disease, has a severe congenital form and an adult-onset form. Myotonic dystrophy type 2 (DM2), also called proximal myotonic myopathy (PROMM) is rarer than DM1 and generally manifests with milder signs and symptoms. Myotonic dystrophy can occur in patients of any age. Both forms of the disease display an autosomal-dominant pattern of inheritance. Both "DM1" and "DM2" have Adult-Onset forms.