A Practical To-Do List For Family Caregivers

“Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” said Nancy A. LeaMond, AARP’s chief advocacy and engagement officer and a Next Avenue Influencer in Aging.

According to AARP, family caregivers “commonly experience emotional strain and mental health problems, especially depression, and have poorer physical health than noncaregivers.” And they rarely receive training in providing care. As my colleague Emily Gurnon wrote, the 2016 Families Caring for an Aging America report said family caregivers for adults 65 and older are “stressed, isolated and often suffering financially.”

Most family caregivers juggle work and caregiving. And 78% of them incur out-of-pocket costs due to caregiving, spending $6,954 a year, on average, according to AARP’s Family Caregiving and Out-of-Pocket Costs: 2016 Report.

Kaiser Health News has provided a excellent compilation of practical acts which every caregiver needs to perform:

  1. “Your identity needs to be documented in your loved one’s medical records. At every doctor’s appointment with an elderly family member or friend, check that the record lists your name and phone number, and ask that you be contacted in any kind of emergency.”
  2. “Your capacity to provide care to a loved one should be assessed. . . Speak up and tell doctors, nurses or social workers what you can and cannot do.”
  3. “Your capacity to provide care should be incorporated into your loved one’s care plan. Your abilities and limitations need to be recognized and addressed in every care plan that’s developed for your loved one. If you work from 7 a.m. to 3 p.m. and a parent needs help toileting, dressing and eating breakfast in the morning, for instance, that gap needs to be acknowledged and discussed.”
  4. “You should get training in medical tasks for which you’ll be responsible.”
  5. “You should be connected with community resources that can be of help. A variety of resources for caregivers are available in many communities: local Area Agencies on Aging, which offer assistance accessing services; centers on independent living, which help people with disabilities; and disease-focused groups such as the Alzheimer’s Association, among other organizations.”
  6. “You should be given access to medical records and information.”

I would add that you need to make sure you loved-one has a durable power of attorney or you have court-ordered guardianship.

In fact, medical institutions are obligated to hand over information when an older adult has granted a caregiver a durable power of attorney for health care decisions or a HIPAA authorization specifying that they receive access to medical materials.

Note: Alabama is not one of the 36 states which have passed Caregiver Advise, Record, Enable (CARE) Act which has been put forward by AARP.  “The CARE Act requires hospitals to (1) Record the name of the family caregiver on the medical record of your loved one, (2) Inform the family caregivers when their  loved one is to be discharged and (3) Provide the family caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.”

The impetus comes from AARP’s 2012 survey, which found that 46 percent of caregivers perform medical tasks, such as giving injections, most without any training or guidance from medical professionals.

“This is a very important bill,” said Benton, co-director of the Los Angeles Caregiver Resource Center. “This really puts the pressure on the hospital to actually identify the caregiver and try to meet with them according to their schedule.”

Note that Congress passed some legislation in December which might lead to additional helps and support:

The RAISE Family Caregivers Act requires the U.S. Secretary of Health and Human Services (HHS) to develop, maintain and update an integrated national strategy to support family caregivers. And that support is sorely needed.