Question of the Week

July 9, 2007


At some point in their lives, most people will end taking care of another person -- even if just means babysitting for a few hours. Beyond a few hours, there are those whose entire lives revolve around being a caregiver.

This can be parents caring for children, older siblings caring for younger ones, grandparents caring for grandchildren, children caring for parents and/ or grandparents, or younger siblings caring for older ones with special needs.

If the person for whom the care is provided has a chronic illness or disability, then the caregiving can become more complex.

"More than 50 million Americans care for a family member or friend with a chronic illness, disability or advanced age during any given year, according to a 2000 survey by the National Family Caregivers Association. And the number of people who take on this role will likely boom: The proportion of the U.S. population who are adults 65 and older will rise from 12 to 17 percent in the next 20 years, according to the U.S. Census Bureau."
American Psychological Association

There are adults who are in the position to be caring for their aging parents and their young children at the same time. As this requires more time from the parent, the children may be asked to help with more of the care and responsibilities around the home -- as well as helping with some of the caregiving responsibilities.

"From 1990 to 2000, homes in which three or more generations live together grew more than 38 percent. The largest segment are those in which the householder lives with an adult child and grandchild, but [in] about one-third of these extended family arrangements... an aging parent joins the nuclear family."
ABC News

It would probably come as no surprise if someone were to hear of a grandparent caring for a grandchild after school or while a parent went to work. However, as more and more homes become multigenerational, it is not just the grandparents who are the caregivers. There are times when it is the children who are providing the care for a grandparent -- or other older relative -- so that their parents can go to work. Even if the parents are home, the children can be asked to help with the caregiving as part of their role in supporting the family as a whole.

It is not just aging grandparents who are receiving care. Children can also be asked to care for sick or disabled siblings or parents.

"More than 1 million children in the USA take care of sick or disabled relatives, shopping, feeding, dressing, medicating and even changing adult diapers, a government-financed study finds. It is the first to document what advocacy groups call a hidden national problem. The 1.3 million to 1.4 million child caregivers, ages 8 to 18, have responsibilities more suited to adults, the national survey says. ... It estimates that 44.4 million adults in the USA provide unpaid care for another adult. But child caregivers largely have remained hidden and often stay silent because they fear being separated from parents. ... Most care for parents and grandparents who have ailments such as Alzheimer's disease and cancer. At least 75% get some help, but half say they spend a substantial amount of time caregiving. And even those who are not the primary caregiver perform many tasks by themselves."
USA Today

In many cases, the children don't even need to be asked to help. They just do it.

"'It's my responsibility,' he told me. 'We're family.' His name is Joel and he is 11. His 13-year-old brother, Scott, feels the same way, explaining that it's 'just something you do, you take care of each other.' This is not an uncommon theme in children when they live with someone who has a physical disability or a chronic illness. Whether it's a parent, step-parent, grandparent, sibling or non-relative, children also take on the role of caregivers, though this role is frequently less distinct than that played by the adults in the home. However, children are no less affected by the life changes that come with caring for someone with chronic illness or disability..."

Whoever the caregiver, it can be an exhausting job that seems to require far more hours in the day than any person has to give to the task.

"Common signs of caregiver stress include the following:
* Feeling sad or moody
* Crying more often than you used to
* Having low energy level
* Feeling like you don't have any time to yourself
* Having trouble sleeping, or not wanting to get out of bed in the morning
* Having trouble eating, or eating too much
* Seeing friends or relatives less often than you used to
* Losing interest in your hobbies or the things you used to do with friends or family
* Feeling angry at the person you are caring for or at other people or situations ...
These feelings are not wrong or strange. Caregiving can be very stressful. Because being a caregiver is so hard, some doctors think of caregivers as 'hidden patients.' If you don't take care of yourself and stay well, you won't be able to help anyone else. Talk with your family doctor about your feelings. Stay in touch with your friends and family members. Ask them for help in giving care. Asking for help doesn't make you a failure. Look for help in your community. You may start by asking your church or synagogue if they have services or volunteers who can help you. You can also ask for help from support organizations..."

More and more, the need to support those who care for others has been recognized, but not all those who provide the care know that help exists.

The National Family Caregiver Support Program (NFCSP) "calls for all states, working in partnership with local area agencies on aging and faith- and community-service providers and tribes to offer five direct services that best meet the range of caregivers' needs, including:
* Information to caregivers about available services;
* Assistance to caregivers in gaining access to supportive services;
* Individual counseling, organization of support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to their roles;
* Respite care to enable caregivers to be temporarily relieved from their caregiving responsibilities; and
* Supplemental services, on a limited basis, to complement the care provided by caregivers. ..."
National Family Caregiver Support Program

While these services are not available to all caregivers, they are available to:

"Family caregivers of older adults (age 60 years and older); and Grandparents and relative caregivers of children not more than 18 years of age (including grandparents who are sole caregivers of grandchildren and those individuals who are affected by mental retardation or who have developmental disabilities). States are required to give priority consideration to: 1) persons in greatest social and economic need (with particular attention to low-income, minority individuals); and 2) older individuals providing care and support to persons with mental retardation and related developmental disabilities."
National Family Caregiver Support Program

Questions of the Week:
What can you do to support a friend or family member who is a primary caregiver? If you are a caregiver, where can you look for help? As a caregiver, what do you need to be doing in order to take good enough care of yourself so that you still have the energy and ability to care for someone else? If you are a child or teen who is a primary caregiver, where can you go for support? What might make it more difficult for children and teens who are caregivers to find support? What can you do to help? What support resources are available in your community (for example, respite care) ?

Please email me with any ideas or suggestions.
Note: Due to increasing amounts of SPAM sent to this account, please include "QOW" in the subject line when sending me email.

I look forward to reading what you have to say.

Health Community Coordinator
Access Excellence @ the National Health Museum

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