For Better Or For Worse: The Real Story

By YourTango

For Better Or For Worse: The Real Story
An author talks about caring for her brain-damaged husband.

In her book To Love What Is: A Marriage Transformed, Alix Kates Shulman writes about sticking with her husband after a fall left him permanently brain-injured. Here, Shulman talks to Tango about how she copes with aging, care-giving and embracing her life, as is.

Did you have a sense when the accident happened that your lives would be changed forever?
Yes, I had that ominous feeling. But life is full of those changes--choosing a mate, choosing a career, having a baby. If you adapt, you'll be okay. If you don't, it's going to be bad.


When you were on the phone with 911 after the accident, the operator used the word "elderly" in reference to Scott. Why did this surprise you?
It was shocking to hear us described as elderly. He was 75, I was 72, but we were just ourselves. We had fallen in love when I was 17 and he was 20 and in our own minds we were still the same people we'd always been. In my book, I do a lot of examination of the whole concept of aging and what these things mean. Young people think well, older people have lived a long life and they're not exactly living anymore. But in fact, that's not true at all. You have your same self. You feel some kind of abstract median age. You are usually surprised when you look in the mirror and you don't look like a 40-year-old anymore.

You call one chapter in your book "The Calling." What you were called to?
Once we left the hospital, I was called to take charge of Scott's recovery. I was the only one who could do it. I've raised two children it's not all that different. You have to be able to put your own other desires on hold while you care for them. I think a purpose and the ability to fulfill it is what makes for happiness. Even though I hadn't expected to have my purpose, from the age of 72 on, be caring for my husband, it turns out to be rather satisfying to make him happy.

What is your daily life like, living with Scott?
It's very hard to be a caregiver of someone whose memory is gone and whose cognitive abilities are extremely compromised. A lot of people have jobs they love but they hate the hours they put in, and that's what it's like to be a caregiver. The good parts and the bad parts are so intricately connected that you can't separate them.

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