Don't Lose Heart

My sister just sent me the link to this amazing site. We both wonder if there is a way my story can be posted in order to reach other caregivers to let them know they are not alone. I wrote my story, “Afterall: Our Love Story” for my husband Brian. He was/is the love of my life.

We met when I was a freshmen in college and he was teaching the Jazz studies program for the year. It was love at first site. Brian was teaching one year at my hometown college while he prepared to audition to study with a world reknown classical saxophonist in Bordeaux, France. We were madly in love and married on the one year anniversary of our first date. Brian was accepted to study overseas so we moved to France soon after our wedding. We spent the year living in Bordeaux and falling deeper in love. Just weeks before Brian was to return home he contracted viral encephalitis–an infection in his brain.

It was a nightmare that we couldn’t wake up from. He was in a coma and intensive care for weeks the summer of 1990. The encephalitis left him unable to walk or talk. He was emaciated and bedridden. Finally we were able to fly home in October only to realize there was a waiting list for a long term rehab and the only option the hospital gave me was a nursing home. I refused. I was 20 years old, but I was not putting my beautiful and talented husband in an institution. We didn’t have insurance or money or much in the way of support, but I refused their idea of a nursing home and cared for him myself. We had a small apartment and I took him to out patient rehab until I learned how to do all his therapy myself. Medicaid funding ran out and his therapy didn’t last long. In my care his health improved. I did physical therapy with him every single day. We got an easy stand so he could stand for an hour each day too. He was happy and vocal although he never spoke again. He lived as “normal” a life as I could give him. AND HE WAS LOVED! oh how he was loved. He has been dead for 4 years now, and I still love him with my every breath!

When Brian died not only did I lose him, but I lost my job, my purpose, my reason. It has been a very very difficult 4 years, but about 2 1/2 years ago I decided that since I kept waking up each day I was going to try to make something of what’s left of my life. I want him to be proud of me. I wrote our story to keep it in my words, in my thoughts, How I experienced it. I did it for Brian and to give to my family, but as I have shared it with people I realize that people are moved by it. I don’t ever want Brian to be forgotten. Nor do I want to forget how much we loved one another. He was my life for half of my life. I met him when I was 18 and he died when I was 36 (almost to the day!)

People told me how amazing our story was but I couldn’t appreciate it from an outsider’s point of view until only recently. Now time has distanced me from the woman I once was.. for I am no longer a wife or a caregiver. Only recently can I allow myself to be amazed at the woman I was. What I did for love…it was the greatest gift…to be able to love someone so truly and purely as I loved/love Brian. I never wanted anyone to take pity on me or on us…because what those people didn’t know and I did…nothing in my life will ever bring me as much joy and purpose, satisifaction and meaning as being his caregiver…the best caregiver I could be to the love of my life, Brian. Loving him made me a better person. Most people do not get the opportunity to express or show someone just how much they love them–I did. And by sharing our story…our love goes on and on.

I still look for handicapped accessiblity, I still feel the urge to rush home to check on Brian, and I still find it strange to sleep through the night and not get up to turn him every 3 hours. All those little tricks I learned to accomplish things seem to go to waste now–things like using the rubber dishwashing gloves and baby powder to put on TED hose, or taping together 8 popsicle sticks to use as a mouth prop to push the pills down Brian’s throat so he wouldn’t have to taste those horrible things, or I’d use a suringe to make sure he drank enough fluids…I could go on and on..the B-easy board for transfers, the roll-in shower and how it changed our lives, the active catheter for men and how it too changed our lives!

It hasn’t been easy and I still have times where it feels the wind was knocked out of me the grief hurts so badly, but I go on. I studied nutrition and health for so long I studied a little more and became a certified fitness trainer. It is a way for me to help someone else live a better life through diet and exercise. Those two very important factors in maintaining our health. I especially want to encourage everyone to take their health seriously as you just never know when you may lose it.

I could go on and on as this story is now 20 years long! So I’ll share this link to help others and also because to read these stories and know I’ve been there, and gone through that, is to know me. It validates my life– this is who I am! And I’m proud I made the choices I did, no matter how difficult and scary and exhausting….most people introduce themselves and tell you their profession and I’m starting over literally. But I will always hold my head up high and be proud of being a caregiver.
Patty Bayman

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