A Caregivers Story

Hi I’m Tony, Jeannie’s husband and caregiver. I wrote the following about five years ago and I really don’t know why? It was just something I felt I needed to do at the time. Maybe it was frustration or therapeutic, but I had to get it out of me, which was strange as I’ve never considered myself a good writer and have always viewed it as a chore.  Anyway, here is our journey over the last 10 years through my eyes and if anything, I hope it resonates in some way that as a caregiver you’re not alone and we understand what you are going through!

On a regular day five years ago after a stressful day at work, my wife and I sat down like we had done almost every day before and proceeded to tell each other about our day. We had made a pack early on in our marriage that we would take 20 minutes and talk about the events of our workday and that would be it. Twenty minutes to bitch and then that topic is off the table for the rest of the evening, and we would move on to more pleasant topics.

After a few sips of wine and not too far into the conversation, my wife declared she had to use the bathroom and got out of her chair and proceeded to take a few steps and then suddenly lost her balance and fell headfirst into the sofa. I jumped up to make sure she was OK, and when she stated she was, I joked that we should cut her off and no more wine for her. She chuckled and as she was starting to get up, I looked into her eyes and saw a look I will never forget. A look that is hard to describe. It was an empty stare with perhaps confusion and or despair, and at that point I knew something was awfully wrong.

Prior to this episode, there had been little clues along the way, but we never thought much of them. My wife had always been clumsy for as long as I had known her, the result of a foot surgery and two knee replacements, perhaps? But this time was different, she had been having problems with her eyes and driving became difficult, especially at night and since her work was not too far out of the way from mine, I started taking her to work and picking her up.

After an eye exam, it was determined she was starting to develop Cataracts. The eye doctor assured her that a new set of implanted lenses and she would be good as new. A few weeks later, she had her new eyes and life would be good, so we thought. Even though she could see better, something had changed, and her balance seemed to get worse. When I asked her if she was dizzy, she replied no, it was more like the floor was moving and said the only thing she could relate it to, was like walking on the fun house floor at the fair when she was a child.

Slowly, things kept getting worse and I would watch her struggle to get out of the car and step up on the curb to walk into work. I began thinking to myself, something is not right. Fatigue started to become an issue and she would be totally exhausted by the end of the day. Eventually friends including a radiologist friend started to notice that she was having trouble and though we tried to blame it on the knee replacements and or old age, they were not buying it.

Fast forward to after the sofa incident, and a new symptom started to develop with extreme nausea to the point that even lying still on the couch or bed made her nauseous. At that point we knew we had to do something and reached out to her family doctor who would run some tests and determined she needed to see a specialist.

After several weeks of testing and poking a prodding, we still didn’t have a clue what was wrong. What we did know was she was getting worse, and it got to the point where she was bed ridden and needed help with walking and even doing the simplest of tasks.

After 6 months from falling into the sofa we had a diagnosis. My wife was diagnosed with Multiple Sclerosis, a neurological disease for which there was no cure; we were devastated. Disbelief, anger, sadness, depression, is just a few of the emotions than ran through our minds. Our life wasn’t supposed to end up this way. We were going to work as long as we wanted to, save some money, retire and live happily ever after.

As the caregiver, writing this is hard because I love my wife so much. Having to watch her learn to walk again, retrain her brain to do simple tasks that I take for granted is difficult. Part of her physical therapy after relearning to walk was to go into a grocery store and pick out just “one” item. Watching her struggle to maintain balance and do so was heartbreaking. But she managed to push through and do it even though the whole process made her want to throw up and she would have to go lay down for the rest of the day.

Moving forward after almost two years of PT and trying different drugs, we were fortunate enough to find a drug that has kept the disease at bay somewhat, though no one really knows what the next day will bring as the disease is sneaky and relentless. We have been to Carillon Neurology, Duke Medical Center, the Cleveland Clinic and UVA Medical Center looking for answers and treatments.

After visiting these facilities, I can’t speak for my wife as I hope l never have to experience what she’s been through, but I believe we are truly blessed as there are many we have seen that have not been as fortunate. Some are in wheelchairs, some walk with canes all the time, others have lost their sight, and some have spasticity and tremors, while others can’t speak. For some of the lucky ones depending on the day, you would never know they had it. The disease is non-discriminating, it doesn’t care what color you are, what gender you are, religion you belong to, your political affiliation, what age you are, or how much money you have.

People occasionally ask me how I’m doing through all of this, and my response has always been, it could have very well have been me and all I can do is my best to offer my wife love and support. My wife is my hero. All through this crappy hand she has been dealt, she has not once said “why me”. She has been strong, stubborn, persistent, angry, loving and kept her sense of humor at times when she probably wanted to cry. She is a fighter and I truly believe these traits have kept her from surrendering to a disease I wouldn’t wish on my worst enemy.

I share this private journey in the hopes that I can inform and educate those with preconceived perceptions that a handicapped person has to look handicapped. As I have stated earlier, there are some with this disease that on a good day, you may not be aware they even have it. Fortunately, you don’t see them on a bad day when they can’t get out of bed. To all who may read this, I wish you well and hope you never see that “all too familiar look” in your loved one’s eyes, the day our lives changed.