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When the Caregiver Path is Not Clear

By Suzanne Mintz, president and co-founder of the National Family Caregivers Association

At age 91, my mom fully understands caregiving. She cared for my dad for four years after he had a stroke. He was ambulatory, but the stroke caused dementia and made him lose some of his inhibitions. He became a kleptomaniac. My mom was sure he would be carted away one day after he walked out of the Office Max with boxes of pencils, pads of paper and other things he just blithely picked up and put into his pockets. We laugh about it now, but it made her a nervous wreck at the time.

I'm still amazed at how much my mom did to take care of my dad. She needed lots of emotional support, as you would imagine. We talked a lot on the phone, and I visited as often as I could, but it was she who did the day-to-day caregiving. Despite this, she has a hard time believing that she may need that type of care some day, that she may not be in charge of all her faculties at some point and that she'll need help with personal care as my dad did.

Blindsided at 91
Until the middle of 2007 my mom was a poster child for what it meant to be dynamic in later old age. She volunteered on the pediatrics ward in the local hospital once a week, was active in her synagogue, went to the opera, and walked back and forth to the supermarket, the bank and the pharmacy.

Then she had her first attack of vertigo at age 91. It landed her in the hospital and then to myriad appointments with doctors, who prescribed a variety of medications and some balance training. Serious attacks made her very nauseous and dizzy, unable to function at all. She hasn't had a serious attack in a while now, but she does get bouts that still debilitate her, and she doesn't know when they might come. This keeps her in a state of perpetual unease and uncertainty. Despite her years, she said she never used to feel old. Now she says she does.

What if mom needs care?
We have of course talked about what to do if and when she will really need care on a full-time basis. She insists she wants to stay in her apartment in Florida and that she can manage with the help of an aide. "That's fine," I say, "as long as you are mentally competent. What about if you start to lose your edge? You won't be able to manage the aide on your own then."

I know my mom would love to be a snowbird; she'd continue to live in Florida in the winter, but then have an apartment here in the Northeast close to me and her wonderful grandkids. She doesn't have the funds to carry two residences, and none of us are really in a position to help that much. I'm already a caregiver for my husband who has MS. I can't handle caring for two. My daughter's house is tiny and although my niece's house is large enough, there wouldn't be any community there for her. It is a neighborhood of young families, very suburban. My mom would be pretty isolated, and that would be true if she moved in with my brother and sister-in-law in Atlanta. In Florida she has some friends, her activities, the life she has known since her mid-fifties.

The security of nearby friends
Two sisters, Ida and Diane, each with their own apartment, live on the same floor as my mom, one to her left, the other to her right. They have been her lifeline ever since the vertigo attacks began. When family members do not live near their parent, and that parent is still independent enough to live on his or her own, it is comforting to know friends can and will check in. I live in the D.C. Metro area, as do my daughter, son-in-law and granddaughter. My niece and her family live about half an hour to the north. My brother and sister-in-law live in Atlanta. That is the extent of our immediate family, and none of us live close to mom.

Without the help of Ida and Diane, I'm not sure my mom could continue to live on her own. During the worst of her attacks, she did have a home health aide stay with her 24/7, in part because we were all afraid she might fall down at any time.

When the path isn't clear
At this point in time there are no decisions to be made. We know what my mom wants and we've thought through the contingencies. We have the basics covered to get through an initial crisis. As a family we have thought about how to handle things if we get that call in the middle of the night. The first step is to decide which family member is best able to get to your parent in an emergency. We've all agreed that my brother would be the first to go to Florida. He is the least encumbered of us all.

Once a family member is able to evaluate the situation, then together you have to determine the best ongoing living situation. In my mother's case, if she isn't capable of being on her own, unable to manage help, then the only logical solution is to move her closer to one of us. Exactly where is an unknown. So much will depend on her actual condition. Where she'll end up living if she needs to move from her apartment is something we'll all have to decide when that possibility starts ebbing closer to reality.

Before crisis time, family members should gather together important items and paperwork. We do know that my mom's legal paperwork is in order, and we all know where the safety deposit box key is kept. She has told all of us more times than we can count. My brother and I can sign her checks, have a key to the apartment and know where she wants to be buried.

So far my mom's financial situation is manageable. She has home healthcare insurance, which certainly was essential when she first became ill.

For now she is not as spry as she was a year ago, certainly more cautious, and she won't fly on her own anymore. But for 91, she is still quite remarkable. Except for the vertigo, which the doctor says may go away as suddenly as it came, there really isn't anything wrong with her except for some minor arthritis. We all hope she will stay healthy and independent for quite some time, and we believe we are ready to handle the situation if things change and she needs our care.