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 3^rd, 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.