For Better Or For Worse: The Real Story

For Better Or For Worse: The Real Story

For Better Or For Worse: The Real Story

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For Better Or For Worse: The Real Story
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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.

In the apartment it's difficult to do anything for myself when I'm on duty with Scott. If I try to do something for myself, like read, he can't tolerate it. So, in the interest in loving what is, I don’t try to read when he's with me. That's what it means to adjust, to adapt.

Part of being in a relationship is creating new memories and Scott can't, while you can.
We're out of synch as far as the memories. Scott has long-term memory. He remembers the number of the motel room where we first made love back in 1950, but he has no concept of the future he can't even imagine what making a plan looks like. He is totally disoriented in space and time.

In your book, you talk about the sweet things Scott says from time to time. Is that the same old Scott or the Scott after the accident?
He's the same person. I'm the same person. We've just moved into a different place in our lives with different capacities. When Scott sees me his face still lights up with happiness and he says "Oh, look who it is! It's my beautiful wife." After the accident he reverted to his former self, always asking me out to lunch because he couldn't stand to see me cook since I made him into somewhat of a feminist. But now when he asks, I can say "Sure, later," and he won't remember when later comes along.

When did you realize Scott wasn't going to fully recover?
After the first year, I realized I had to change our lives from trying to heal Scott to trying to make both of our lives as satisfying as possible. For me that had to include my writing; my work is not over. I still have a lot of books waiting to be written.

At some point you say there is an equal chance that something like Scott's accident could happen to anyone in a long-term relationship.
When you marry or commit yourself forever you think about how you are when you make the commitment. If your relationship continues into old age, one of you is going to be healthier than the other. One of you is going to wind up taking care of or surviving the other. And when that happens you must adapt, and hope adaptation won't feel like a sacrifice, just a new way of living. When the time comes, it's helpful if you have the kind of commitment and love that Scott and I had.

You say you don't think it's a sacrifice, but you are sacrificing what you like and would rather do. Would you say on the ultimate level, it is a sacrifice?
I can't use the word sacrifice, since I don’t think I'm giving up anything of myself. I know he would do it if the situation were reversed. Scott is completely dependant on me, which means that I'm dependant on him, because if he needs me I can't be elsewhere. It’s a mutual dependency. Caring for somebody disabled is an interference with the life you might have if you weren’t a caregiver, and sometimes if feels like a burden, but that's not a sacrifice.

What did you learn from writing your story?
There is nothing so wonderful as a really deep long term commitment. I've been married three times. I've had many, many affairs. I've embraced the sexual revolution and the feminist revolution. But permanent deep love is one of the best things there is. My book is a story about embracing what is, not what could be not what was, not what might be, but what is. Anything else is kind of a waste of time. Regret is a waste. Feeling sorry for yourself is an interruption of a nicely flowing life. So the big lesson I learned is that it is possible to embrace what is.

For more from Alix Kates Shulman, check out Tango's video interview: True Love, Caring for My Sick Husband.

Click here to purchase Shulman's book, To Love What Is: A Marriage Transformed.

This article was originally published at . Reprinted with permission from the author.
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