Family Caregivers

When family caregivers have to make tough choices

Family caregivers should be open to support and resources when making tough choices

By Sandy Mau

In many ways, Suzanne Mintz fits the profile of the lion's share of the nation's 50 million-plus family caregivers. She is a woman, employed, and cares for her loved one at home. Her resources are stretched: time, money, emotions and strength.

But Mintz, president and co-founder of the National Family Caregivers Association (NFCA), can quickly tell you that trying to pinpoint an "average" family caregiver is a futile exercise. Each brings a unique outlook to the task, and a different mix of support and resources. Those who successfully move through the daily challenges seek help when things get tough.

"Unlike when someone dies, the grief family caregivers suffer goes on and on," says Mintz, whose husband has been in a wheelchair for more than 15 years with multiple sclerosis. "Each time there is a worsening in health one grieves anew. Life gets harder and it is sad to watch a loved one decline."

Other caregiver struggles can be counted. According to figures from the National Alliance for Caregiving and the AARP, half of the nation's family caregivers spend 20 hours a week in the task, but 17 percent are providing 40 hours of care a week or more. Research from the U.S. Administration on Aging suggests one-third of all caregivers give up work either temporarily or permanently, or take a leave of absence. Twenty nine percent of regular caregivers report physical or mental health problems.

Mintz says caregiving is more than a one-person job and caregivers shouldn't wait until they are experiencing extremely high stress levels or have a health issue of their own to seek help. For the patient, changes in physical health may point to the need for extra help or a transition to senior housing.

"Patient safety is always an issue, but so is the point when doing more really puts the caregiver's own health at risk," Mintz says.

Senior housing offers a range of options, from assisted living and continuing care communities to nursing facilities and group homes. The mistake many caregivers make is talking their loved one into senior housing, rather than presenting the facts so they can make their own decision.

"We can suggest, we can research the options, but ultimately the decision is theirs," Mintz says.

Mintz offers these six tips for family caregivers considering a move:

  1. Let the right person make decisions. "The first thing a family caregiver needs to recognize is that they can't control their parents or loved one -- after all, it's their life," she says.
  2. Plan ahead. Discuss, research and even visit senior living facilities before there's a need to move. Don't wait for a health crisis. Especially in the case of early or mild dementia, the family should openly discuss options with the person who is ill and with each other early, so preferences are known, noted and followed.
    The NFCA web site, www.thefamilycaregiver.org, includes a resource section for caregivers researching senior living transitions. It includes a link to the NFCA Senior Housing Locator, powered by SNAPforSeniors, www.snapforseniors.com, a current, comprehensive and objective resource of all licensed senior housing in the U.S. The Senior Housing Locator makes it easy to start the search online. For nursing home information, users can link Medicare's Nursing Home Compare and also review comments about the listing.
  3. Be realistic about finances. Your loved one may be able to afford a private pay facility in the short-term, but what happens a few years down the road? Many facilities don't take Medicaid. Speak to a financial advisor before making a transition and consider all the options.
  4. Location matters. Family caregiving doesn't end when a loved one moves to senior housing. Will friends and family find it easy to visit often?
    "You need to think through things like public transportation, especially if it is Dad moving to senior housing and Mom can't drive anymore," Mintz says.
  5. Get the relevant information up front. Some facilities offer only limited care and assistance. Find out what happens should your loved one's condition worsen, and whether they can remain or will have to move again.
  6. Ask those in the know. "The voice of experience holds many truths," Mintz says. Get facility references from other family caregivers, the local Area Agency on Aging, your loved one's doctor or care manager. Then visit the facilities on your short list and speak to the residents there.

This article is provided by SNAPforSeniors, the most current and comprehensive senior housing resource in the nation.