I used to be married and now... I'm not.
I married young and was married for a very long time -- 24 years -- before a largely unanticipated separation; one that eventually, I guess, couldn't help but happen.
My husband was diagnosed with Parkinson's disease just after he turned 40. A talented long-distance runner and veteran of many first-place race finishes and successful marathons, he was an extremely athletic and healthy man. When his foot started to drag and a tremor found its way into his left arm and hand, I somehow knew he had this disease but had no idea just what the implications might be. An initial diagnosis inferred that he was pronating and needed new running shoes. I insisted he be referred to a neurologist instead, and another potential diagnosis of a possible brain tumor ensued. However, it was Parkinson's disease, strange given his relatively young age, but still there it was.
And there we were, sitting in the car in the parking lot before making our way home, trying to grasp the news. It was Halloween and we had four kids, age 12 to just a year old, waiting for dinner and to go trick-or-treating.
We both were in tears. It wasn't the end of the world by any means, but we didn't really know what it did mean or how quickly it would progress. We would get a second opinion and most important, we would remain optimistic. We were in this together.
My husband was a man whose first thought in the morning focused on what he would do with his kids that day. A stellar father, he would work long hours in retail, and come home and play catch, read bedtime stories, put aside yard work because his daughter wanted to go in the pool or go for a bike ride. If he were working a late shift, he'd do bus-stop duty, take kids to kindergarten, plan a special breakfast out with one of them, or assist at a soccer game before embarking on an hour-long ride to work. He brought pizza home late at night, and woke all the kids up to have a slice and visit with him.
So it was natural that one of his first thoughts did not involve himself as much as how this would affect his kids. He thought about his youngest, not even 2 years old yet. "What if someday I won't be able to play ball with him?" he asked. We were both in tears, and he vowed he'd fight this disease for all he was worth.
And he tried to.
Medications often made him sick, dizzy and lightheaded enough that he would have to pull over on the highway on his way to work. Symptoms escalated pretty fast. Snide comments were made on the work front. He had recently started working for a national retailer and had been quickly rising through their management ranks when the diagnosis finally was made. He didn't want to let on he had anything going on in case it might slow his ascent down. Eventually it would. At 44, he was forced to go out on permanent disability.
I told him not to worry. I would go back to work and take care of everything. I was 36 years old. My husband's disability was turned down twice by Social Security although his doctors and former employer were firmly behind it. In a very short time, he had significant physical and cognitive issues, the latter, which we had never even known to expect, let alone have any idea how to deal with.
For almost a year, we lived on meager savings and my low pay. I appealed to then-State Senator Judd Gregg to please look into his case. Within a week, we got two phone calls on the same day -- one from the senator's office, ready to assist. The second from our lawyer. My husband's disability was approved. Apparently, no one over the course of the year had looked at all of his paperwork at one time. When they did, it was obvious that he had legitimate reasons for the disability request.
All of this took a terrible toll on my husband, emotionally as well as physically. Although he tried to do the best he could for a long time, his symptoms increased and his illness eventually consumed him. He refused to accept any limitations imposed upon him (which seemed positive, but in time led to some serious safety issues), and his cognitive loss created situations often beyond anyone's control. The kids and I never knew what to expect or what we might come home to.
The dedicated, loving father lost his ability to put anyone or anything first anymore, beyond than his own illness and needs. He was in survival mode, and as many caregivers can attest to, the playing field was no longer level. It was difficult to judge what was illness-based, what was behavioral, or what was what anymore. His children could no longer look toward their father for help or care; the positions had reversed.
We involved many, many professionals -- from neurologists and a psych-pharmacologist to physical/occupational therapists and adult daycare facilities -- in dealing with the issues at hand. There were many, including medication misuse, behavioral problems, speech issues, car accidents, hospitalizations and rehab due to injuries, cognitive impairment, and huge safety concerns. Our lives became crisis central and escalated to a degree that only we can truly understand. Very few people outside of our immediate circle of family and friends had any idea what we were all going through, and even then, most of it was learned secondhand. The man that we knew and loved deeply had become a stranger to us, and it broke our hearts.
I operated as a single parent for many years before I legally was. Throughout all of this, my children rose to challenges that I could never have anticipated they would ever face. They once had this amazing father, and although he is still alive, it's not a role he has not been able to maintain for many, many years now.
We continue to grieve. No matter how much we love one another and appreciate what we have as a family, there is a still an empty chair at every special occasion, at every family dinner, and in every quiet moment together. More than anyone, I know how much he would have loved everything in our lives, and even when we are with him, he doesn't really interact for the most part -- I think we overwhelm him at times.
We also grieve profoundly for what's happening and has happened in his life. We feel incredibly guilty although no matter how much any of us has tried to do, or can possibly do, it's not enough. We can't change things enough, nor could we ever -- no matter how hard we tried. And believe me, I tried everything. I thought we were in it together, and if I tried terribly hard, I could make it right for him and make it work. I couldn't.
He is in an advanced stage of Parkinson's disease now, lives in a managed care facility and is believed to be afflicted with Lewy Body dementia as well. Although he has significant cognitive issues, it's not like he isn't aware of what's going on. He knows and it's a very hard life for him. Our two oldest children are now his legal guardians.
I used to be married to this man, and now... I'm not.
The man that I deeply loved is missing. Every now and then, a remnant of him surfaces. It might not be evident to anyone else, but I see it and I know him. And sometimes, he looks at me and he remembers, too.
Follow Pamme Boutselis on Twitter: www.twitter.com/pammeb