How will you care for loved ones through their old age or illness? Prize-winning writer Beth Witrogen McLeod says most of us avoid this question, even though we are nearly certain to face difficult caregiving issues at some point in life.
Having struggled to secure the best care for her own infirm parents, McLeod now shares her experience, resources and research with others. She hosts a caregiving forum on ThirdAge and has written a new book, Caregiving: The Spiritual Journey of Love, Loss, and Renewal.
ThirdAge: Talk about the emotional toll of caregiving -- it must be a wrenching experience.
Yes it is, it is when it's unexpected. It's very hard to see our parents and our spouses become frail.
Most caregivers suffer tremendous guilt and frustration, depression, helplessness -- because they simply have not been trained to think about taking care of parents or of spouses. We do not tend to prepare early, so this throws us into tremendous emotional trauma, and is a very embarrassing kind of situation. Unless we talk about it -- in support groups or in other ways -- we tend to sit with these issues and think that we are less than adequate, when in fact that is not true.
Most families go to heroic efforts and are very successful in their efforts to take care of frail and aging family members, but we are not supported in this by society -- it's seen as women's work. Women are in fact about 80 percent of caregivers and they take on about 18 extra hours a week caring for an aging parent or spouse, in addition to raising their own families and working. So these are issues that need to be addressed; caregivers need to have a voice and you need to be allowed to express these very difficult emotions [to carry you] through this rite of passage with great dignity and respect for everyone involved.
ThirdAge: What are some of the resources available to people?There are actually many. There is an entire network of aging services -- although it is somewhat fragmented. It is available in every community, and is mandated by the Older Americans Act. There are community and home-based resources for housing, for respite care, legal and financial counseling. There is hospice, there are home health aides and different kinds of chore services. There are volunteers, there are people who do what's called telephone reassurance. There are transportation and meal services, nutrition sites, adult day care.There are also medical societies that offer a lot of medical services, and equipment rental and support groups. Hospitals offer senior information and referral ... there are a lot of options ... in rural and urban communities for people to avail themselves of, and many are very low cost or even free.ThirdAge: Where can people find out about these services?The best source is going to be the local area agency on aging, also known as senior information and referral or the local department or agency on aging, and they're in every county in the nation as mandated. You can find out where yours is through calling the National Elder Care Locator at 1-800-677-1116.
ThirdAge: What role do you see the government taking in this area, if any, and what would be most helpful?This is a very heavily debated area and there are no easy answers, because families are not all the same.The government has been very involved through the Older Americans Act, in providing states and every county with aging network services, and I think this is well deserved kind of funding and I would like to see it continue.What caregiving families most seem to need are respite options -- that is, breaks for caregivers -- affordable, accessible and reliable ones. They need a lot more help with reimbursements for home health care, for custodial care -- that is the number one issue. If you are very wealthy, it is not an issue. If you are very poor, you get Medicaid. If you're in the middle, which most of us are, you either have to spend down to poverty level to get Medicaid, or you spend your retirement money, and your whole future, and your grandchildren's future to try to take care of aging parents.Before my parents both had to go into a nursing home, we were spending $16,000 a month on home care. We went through about $200,000 in two years and the whole family was bankrupt. This is middle class, long-term care, so this is an issue that must be addressed.