Caregiver Reflections: A Blessing and a Curse

I have chronicled my experiences as a caregiver for my fiancee Tracey here right up until her death from MS-related respiratory failure two and a half years ago, and shortly afterwards. I have wanted for some time to write about what I have learned, and how this experience has affected me but didn't quite know how I wanted to frame it. But I think now I know.

How I met and feel in love with Tracey

I met Tracey in 2006. At that point, she had suffered from SPMS for 12 years and was in a wheelchair. She was a single mom raising a 16-year-old daughter. Her boyfriend had abandoned her shortly after her diagnosis and did everything in his power to avoid paying child support, leaving her truly on her own. Tracey was also a gifted writer who had published three books of poetry mostly dealing with her MS diagnosis and how she dealt with it. It was through her poetry that I grew to understand her, and it wasn't long after spending time with her that I fell deeply in love with her.

Becoming a full-time caregiver

For the first six years, we had a happy, fairly normal life. The MS was slow to progress, and we traveled (cruising was our favorite), went out to movies, shows, restaurants, and a few trips to Florida to visit her mom. Then she developed bedsores, spending six months in the hospital where she lost half her body weight. When they stabilized the bedsores, she came home and I became a full-time caregiver. She had a visiting nurse and part-time attendant, which allowed me to keep my job for a while, though in a diminished capacity.

I learned all about wound care, catheter care, and how to move her in and out of bed without aggravating her wounds. By this time, I had acquired a full size conversion van with a wheelchair lift, so she could stay in her chair while we traveled to my house in Pennsylvania on the weekends, a much-needed break from her apartment in New York.

Tracey became completely disabled

In 2016, two years after I left my previous job, I took a dream job with a startup company near my home, and we moved to Pa. permanently. By now, Tracey was completely disabled, and could not do anything for herself. I got up very early every morning to change her, bathe her, flush her catheter, redo her wound dressings, feed her breakfast, and sit her up in her bed. A neighbor would come to give her lunch, reposition her in bed if necessary, and generally keep her company while I was at work, with instructions to call me should anything go wrong. At night and on the weekends, we would be together constantly. We would go out when we could, but mostly stayed in the house, her in her bed or in her chair. I would read to her almost every night, tell her jokes when she needed to laugh, and even taught her to speak some French. Sometimes, I would scoop her up in my arms and we would dance for as long as I could hold her.

A level of love and intimacy I never knew was possible

It wasn't easy for either of us, but looking back, I have no regrets. Donna Steigleder summed it up in her recent article when she talked about how two lives become one in the caregiving process. Tracey and I became one, and I felt she helped me to become a much better person as I absorbed some of her better traits, which I had previously lacked. More importantly, I was able to experience a level of love and intimacy I never knew was possible.

It was truly a blessing.

The sixth stage of grief - guilt

When two people merge themselves into one, what happens when one of them dies? The five stages of grief are skewed somewhat, as we both knew this was inevitable. Acceptance was the only stage that applied, along with that sixth stage caregivers feel, i.e. guilt. But the guilt is temporary. You, as a caregiver, had done everything that was asked of you, and you must get on with your life.

The patience I learned as a caregiver

The afterlife of a caregiver is one that is different than one might imagine.
I thought I would just get on with my life. I still had a great job, and a few months later, I began dating again and thought that everything would return to normal. Professionally, I had risen to the top of my field as a cosmetic/personal care chemist. I threw myself into my work and was very successful making this startup company grow. After years of dealing with the petty concerns of vain people, one day I decided I'd had enough. I left that job, and have not looked back. Today, I have a second career in childcare, specifically for children with disabilities, and I am much happier. The patience I learned as a caregiver made this possible.

The void that is left

After casually dating for a while, I met a wonderful woman who had recently lost her husband. Hers was a different experience, as he was very abusive towards her. But she understood what I had gone through, and I really thought I had found someone to accompany me through the next part of my life. But it wasn't the same, I knew I could never feel the same with her as I did with Tracey. We remain good friends, and she has moved on with her life.

I will keep looking, but it's not looking good. When two lives merge into one, and you must separate yourself again, the void may be too great to fill.

This is the curse.