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The life of a caregiver

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I heard from a reader this week about a very important healthcare topic — caregiver support. Like my mother, his wife suffers dementia. He expressed deep gratitude to his children for being there for him while he tries to care for his wife, who suffers from dementia.

Despite what he's going through, all he talked about is how much his wife means to him, and how fortunate he is to have children who stop by for lunch or on weekends, and who will be there to help him make decisions as her condition declines.

I couldn't help but think about my sister in New York, who took on the burden of caring for my mother without hesitation. She looked for and found those daily blessings of getting to know our mother, and herself, better. She learned to laugh at things that used to bother her. Although dementia is a very serious thing, she kept her sense of humor about my mother's responses, which are sometimes comical. More than once, she expressed how glad she was that she wasn't an only child. She couldn't imagine doing this alone.

And now, since moving my mother to New Hampshire, my sister and brother are experiencing the same difficulties — along with the joys — of caregiving. They visit her daily, and since her stroke, it has been hard for them emotionally to see how it has affected her.

Just last week my mother could feed herself, shower, get dressed and do many other things for herself. Now, she can't talk clearly, and needs help with just about everything. She is in a rehabilitation facility, and we are exploring our options for when she stops making significant progress there.

The change, of course, is hard for all of us. But when you're right there, it really hits home. My little sister told me after the hospital moved my mother to the rehab facility and she went to visit her, my mother told her she felt like she was suffocating. She just wanted to go outside. It brought her to the verge of tears. My brother talked about the bright phosphorescent lights, the blaring televisions, the hard chairs.

Being a caregiver is not an easy job. Studies have shown that caregivers risk their own health when they decide to care for a loved one. A 2004 survey conducted by the National Alliance for Caregiving and the AARP found that many caregivers say their health had gotten worse since becoming caregivers. The most common problems were lack of energy and sleep, stress or panic attacks, pain, depression, headaches, and weight gain or loss.

Anecdotally, I've known several people who — after spending months or sometimes years caring for a spouse — suffered a major health problem, like a heart attack or stroke. It seems to happen as soon as the person they're caring for dies or is moved into a facility. As if the body suddenly says, 'OK, I'm off duty now, and here's what's really happening.'

Fortunately, there are many caregiver support groups. The Alzheimer's Association has a list of meetings designed support to people caring for someone with dementia. Other support groups are fashioned around people caring for a loved one with another disease or illness.

Unfortunately, not every care giver can take advantage of support meetings. One of the biggest problems that caregivers have is not only the emotional drain, but the lack of time they have to take care of their own health. As our reader who is caring for his wife pointed out, he's caring for her 24/7, and when he's gone, she's very anxious. He's not about to go off to a support group and leave her.