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Dear Dr. Phil: This Is the Reality of Caregiving

In the March 12 episode of “Dr. Phil,” the popular TV host told a struggling young couple point blank not to combine caregiving duties and romance, after Harley had become a fulltime caregiver for her boyfriend Bailey, who was quadriplegic. Here’s what I want him to know.

Dear Dr. Phil,

When I watched your recent clip telling a young woman involved in a relationship with her quadriplegic boyfriend, “You can be his lover or you can be his caregiver, but you can’t be both… It won’t work, 100 out of 100 times this won’t work,” I got a little nauseous.

How dare you sit in your high and mighty place of privilege and tell families like ours what we can and can’t do?

I met my husband over 30 years ago in a recovery fellowship. We were both early in our sobriety journey and the cards were stacked against us from the very beginning.

We got married a few years later and have had a lot of ups and downs. We’ve raised a family of four kids with a number of medical needs and disabilities. My youngest son was born with a major congenital heart defect and Down syndrome in 2001.

All four of our kids were patients at the Shriner’s Hospital at one time or another. I’m familiar with just about every medical plaza in our area. It took me a while to come to terms with the responsibilities of being a mom to kids with disabilities, but I eventually learned that this was a bend in the road, not the end of it.

A few years later I was sitting at a Down syndrome conference where a speaker stated that if we lived long enough, disability would eventually affect every single one of us. I was only 47 at the time. I didn’t realize just how soon it would happen to me.

During the summer of 2010 I started having horrible neck pain. I quickly became incapacitated and soon learned I had developed cervical dystonia, a neurological movement disorder that affected my neck and shoulders.

I went from caregiver to patient overnight. I couldn’t even stand up to cook a quick meal. My neck was cocked and twisted to the right. I lost my ability to drive. My body shook in a way that resembled Parkinson’s. This was the most devastating thing that could happen to me as a mom to kids with disabilities.

My son at that point was still on the years-long waiting list in Florida for social services. We were fortunate that we had my husband’s law enforcement pension because he not only had to become my son’s caregiver, but also mine. He had to sell his business. I had to be driven everywhere. (He jokingly called me Miss Daisy.)

Because of the severity of my condition, we were finally able to access social services including respite. But you know what? Just because you have access to social services doesn’t mean there are qualified caregivers around.

Your comment to Harley about finding alternative caregivers was discouraging. Do you have any idea of how hard and expensive it is to find quality caregivers you would have the peace of mind to leave your loved one with? Do you think any of us has the extra money around to hire the best help? I wasn’t qualified to take care of a baby with a heart condition either. Guess what? I learned.

It took years of Botox shots and lifestyle changes to get me to a better physical place where I could resume being a “normal” mom. And then life happened again. Last year I got diagnosed with ulcerative colitis. Know what that means? Lots of poop talk, beginning with my ER visit where I discovered I crapped my pants after passing out in a restaurant.

This has meant still more lifestyle changes and regular GI updates. And from now on, yearly colonoscopies. Through it all, my husband has never made me feel like I was any less desirable than the day he met me.

When we got married in 1989 we promised to stay faithful through sickness and in health, til death do us part. We meant it. Is it always easy? No. Is the romance always there? No. Sometimes we have to hunker down at opposite ends of the house for breathing room.

Our faith, friendship and commitment to each other is what carries us through even on the toughest of days.

P.S. To those living with disability of any kind — know that you are worthy of love and sacrifice. With enduring love you can move mountains.