Caring for the Caregivers
Caring for a terminally ill loved one is often a wrenching experience. As the baby-boom generation enters its golden years, these experiences can only become more widespread.
According to a landmark study published in a 1999 issue of the New England Journal of Medicine, society seems ill-prepared for this trend. The study is one of eight research components jointly funded by the Commonwealth Fund and the Nathan Cummings Foundation.
Among the study's findings:
"What's quite clear from the data is that families bear a huge responsibility in caring for people who are dying," says lead study investigator Ezekiel J. Emanuel, M.D., Ph.D., chair of the department of bioethics at the National Institutes of Health.
- Female family members, wives, daughters and sisters are the primary caregivers for millions of terminally ill patients. They often serve as the sole providers of an array of homemaking, transportation, nursing and personal care needs.
- Less than 20 percent of patients received paid caregiving services in addition to family assistance, and the proportion of assistance provided by non-family volunteers was negligible.
"In effect, they have developed into a separate, unpaid service sector, filling a tremendous need that is not falling on the commercial or the pubic health care sector."
But the demographics of families are changing: More people need to work full time, the divorce rate continues to be high, people are living longer, and more people are moving to different parts of the country. These factors make it more difficult for family members to provide care.
As a result, Emanuel says, he believes it is likely that an increasing number of terminally ill patients will rely on paid caregiving assistance.
"The problem then becomes who will pay for these services once family members are no longer available to provide them?"
According to Emanuel, this is an issue that insurers and health care policy makers will have to consider for the baby-boom generation.
In some cases, Emanuel says, the burden of caring for a terminally ill relative may be too much; it may tip the balance to where it's overwhelming for the caregiver.
In these cases, it often makes sense to consider placing the patient in a nursing home or other health care facility.
The following are some tips to help primary caregivers cope:
- Seek respite.
Don't let caregiving overwhelm you. Use hospice services. Ask friends or other family members to take your place for a day or a half-day every week. And don't use that time to run errands, either. Do something for you. Go to a museum, take a day trip, see a movie, dine in a restaurant, go clothes shopping, play your favorite sport or pursue a hobby.
- Communicate with other caregivers.
There are hundreds of caregiver support groups around the country. Some are sponsored by hospitals and community centers. The Internet has chat rooms, discussion groups and Web sites galore devoted solely to supporting caregivers.
- Record the patient's life story.
If your terminally ill loved one is lucid enough and willing, consider recording his or her life's story into a tape recorder. Use a simple question-and-answer format, where you write out some questions in advance. Use short, open-ended prompts, such as "What are your earliest childhood memories?" "Tell me about your wedding day," and "How would you like your grandchildren to remember you?"