Survey Shows Children Pick Up Some of the Caregiving Load

  • From the third annual Alzheimer's Foundation of America conference (AFA) ICAN comes the not so surprising news that children in sandwich families generally become caregivers for their grandparents. An article about the survey titled "New Alzheimer's disease survey reveals children of sandwich caregivers assist with loved ones' care," gives some interesting insights and statistics.

     

    According to the survey, "Investigating Caregivers' Attitudes and Needs Survey suggest that Alzheimer's disease care is a family affair. Most "sandwich caregivers" - the parents or guardians of children under 21 who also care for an aging parent, other relative or friend with Alzheimer's disease - say their children are assisting with caregiving responsibilities that range from attending doctors' appointments to feeding and dressing their loved ones."

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    When my grandmother came to live with us (long ago), I was a teenager. It was a given that I was one of Grandma's caregivers. She tried her best to contribute to the family, and was able to do some things, but for the most part, she was the one who needed help. I had an older brother and a toddler sister (no one between).

     

    A few years ago, my now adult sister reminded me that I'd started my caregiving career as a twelve-year-old, the day she came home from the hospital. It hadn't really registered with me in that way - it was just a part of my life.

     

    However, when I think about it, I remember the responsibility I felt when I was home alone with my toddler sister and my crippled grandma. Grandma didn't have Alzheimer's disease, but her mind was slowing down and she was severely crippled by rheumatoid arthritis.

     

    I didn't resent the responsibility, but I felt it keenly. I worried about what I would do if my little sister needed help at the same time Grandma did. Now that I think about it, that combination of responsibilities was a big deal for a kid. My brother wasn't around much, as he was working or in school. And, of course, I was the girl, so it made sense (in those days) that I would be the one responsible, when my parents were gone.

     

    I spoke to a group of college students just last week. They use my book, Minding Our Elders, as a text in their gerontology class, so I make a visit each spring to chat with the class. The first year I spoke to the class, I was surprised at how many of those students, who have chosen some type of gerontology as a career, have already been caregivers for their grandparents.

     

    Since that first year with the students, I haven't been surprised at all. Every year is much the same as the one before. A large percentage of the students have been part of a family caregiving team.

     

    One wonderful young lady told me last week that she doesn't even remember her grandma without Alzheimer's. We joked that there should be a place in the "Guinness Book of World Records" for her grandma, who seems to have had Alzheimer's for twenty years. However, this young woman was passionate about caregiving for elders and she adores her grandma.

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    Not all young people will react the same way. Some, who have been in caregiving situations for what seems like their whole lives, will be resentful. I don't know that it's that much different than a child who is raised with a handicapped sibling. The person who has special needs - whether an elder, a parent or a sibling - gets the lion's share of the family's attention.

     

    Some children's personalities respond by getting engrossed in the process and feeling fed by the rewards of caregiving. Others respond by feeling neglected by his or her parents. They may understand why the parents have little time for them, but that doesn't mean that the "well" child doesn't feel neglected. This can even happen with spouses, so why not children?

     

    My oldest son needed to take the backseat, at times literally, to his younger brother, as my youngest son has many health issues. Both of my sons had to occasionally have their needs put on the back burner, as our elders' issues became more demanding. We all had to give. We all had to cope.

     

    The AFA survey wasn't huge, but their sample says that nearly 90% of the teens in these sandwich generation families visit and entertain a loved one with Alzheimer's disease, and 85% pay visits to those with the disease.

     

    My oldest son would bring his clarinet to the nursing home to play for Grandma and Grandpa. Both kids would bring school projects. Sometimes the visits were lovingly planned. Other times they were a "duty." Seeing their grandparents in the different stages of dementia was very painful, and kids are kids. Each son was different and each went through stages. But they did visit. They did entertain. That was part of what being in our family entailed.

     

    The AFA survey found that caregivers want more education and support for themselves and/or their children. That, too, isn't surprising. Education helps, when it comes to caring for a loved one with a disease. Education also helps when trying to help children respond to and cope with a beloved grandparent in decline. Support groups help. Counseling can help. When years of a child's life are taken up with caregiving, it's bound to change who they are. Outside resources can be a big plus.

     

    Having children help as caregivers, in the sandwiched families, truly helps the parents and the elder, especially if the child has a willing nature. If the child is resentful, then it can also create problems. However, most kids seem willing to help in some fashion, and all caregivers can benefit from nearly any help they can get.

     

    To learn more about Carol, please go to http://www.mindingourelders.com/ or http://www.mindingoureldersblogs.com/.

Published On: March 28, 2008