Heidi Godman

When caring for a loved one, many caregivers go it alone

History is repeating itself in my family. My mother has Parkinson’s disease, and my father is her caregiver. Forty years ago, my mom was the caregiver for her own mother, who had advanced Parkinson’s disease and dementia.

I didn’t know my grandmother before she became frail and sick, but I knew that her children adored her. They couldn’t bear to place her in a nursing home, so they took six-month turns caring for her in their own homes. Every day, my mother would bathe my grandmother, dress her, feed her, and make sure she took her medications. She had no additional help, and no support from my grandmother’s doctors. It was exhausting for my mother, and I felt her anguish.

That was in the mid-1970s, when being a caregiver wasn’t a defined role. Now it’s so commonplace that researchers study caregiving. They estimate that 43.5 million people in our country provide in-home, long-term care for older adult family members with a chronic illness. There’s even an entire industry of services tailored to aging in place.

But despite the awareness of these roles, and the support services now available, the attention paid to caregivers isn’t much different than when I was a kid. In fact, a report published today in JAMA finds that many physicians overlook caregiver burden.

“Most physicians haven’t been trained to ask patients about it, and it’s a new clinical habit that you have to consciously adopt and work on,” says geriatrician Dr. Anne Fabiny, medical editor of Caregiver’s Handbook, a Special Health Report from Harvard Medical School.

The authors of the JAMA study found that caregivers are typically women who spend about 20 to 40 hours a week providing care. They also found that most caregivers feel abandoned and unrecognized by the health care system. Spousal caregivers face greater challenges than caregivers helping a parent for a variety of reasons, one of which is that they tend to be older.

Of these caregivers, 32% have a high caregiver burden. There is no medical classification for “caregiver burden.” But it’s generally known as the toll that caregiving takes on a person. It can manifest in many ways, including physical ailments, mental illness, social isolation, and financial problems. “Caregivers get depressed. Then they neglect their own health or they miss doctor appointments because they can’t extract themselves from their caregiving role. They just don’t have support, so things like exercising, getting enough sleep, or engaging in a social life all fall away,” says Dr. Fabiny.

The JAMA study cites cases of elderly caregivers who are so distraught that they try to commit suicide just to get out of the situation. The authors of the JAMA report and others are urging physicians to help prevent or reduce mounting desperation among caregivers by playing a part in assessing the caregiver’s health during regular clinic visits for the person who is chronically ill.

Physicians can evaluate the caregiver by asking:

  • How are you coping with these responsibilities?
  • How would you describe your quality of life these days?
  • How often do you get out?
  • Do you have your own physician?

The answers can help physicians direct caregivers to various services and support systems. These include:

  • respite for the caregiver, in the form of a home companion or an adult daycare program for the patient
  • help with non-medical services such as housekeeping and cooking
  • counseling about caregiver stress and its consequences, from either a therapist or support group
  • training so the caregiver learns how to care for her or his loved one without injury, such as learning how to lift the person without suffering back strain.

It’s the type of support that would have eased my mother’s burden when I was a kid. And it’s especially important to me now that my parents are in a spousal-caregiver relationship. I might worry about my father, a prince who never complains, except that the situation is a little different this time around. First, my mother is not as ill as my grandmother was. Second, my parents have me, a bossy health reporter, who is aware of support options and quick to arrange them. Not everyone has that kind of inside scoop.

So I’m grateful that the medical community is stepping up to the plate and shining the spotlight on caregiver wellness.

“The person you’re caring for is only as good as you are, and if you don’t take care of yourself, you can’t take care of the person you love and are responsible for,” advises Dr. Fabiny.

The Caregiver’s Handbook includes a detailed questionnaire to help caregivers identify problems and solutions for their caregiving situations. It also offers suggestions for legal and financial planning and tips for taking care of yourself as the caregiver, with emphasis on your own health and remembering to exercise, eat right, and see friends and family.

Comments:

  1. www.gabiklaf.com

    i believe that these old respected people with dementia or Alzheimer can be well treated at homes to and their own children can be the best caregivers to them. your post was worth reading Heidi, specially for those like me who give care to their ill-elders at home.

  2. Paul

    I’ve found that a of caregivers can ease the stress of these big responsibilities by allowing themselves to “get out” of the home every once and while. By using some sort of CCTV video monitoring system you can easily watch over your loved ones. I recent bought my own system so that when I’m out of the house I can watch over my grandma even with audio. I bought a system for about $600 with installation. Do yourself a favor and your loved and make the investment.

  3. daycareinventory.com

    all will come back to us, when we can take care of our parents with love, I guess indirectly we will also teach our children to love us, and this will be very useful when we are old, our children will be happy to take care of us

  4. It’s sad to see. My mother took care of my grand father (dementia) and I had a close family friend whose parents took care of their grandmother (Alzheimer’s). It’s sweet to see people rally around their family, but it’s sad when you see people going it alone.

    All the best,
    Laura

  5. Carol Anne

    Having helped my mother care for my dad until he died, and now faced with helping my elderly mother, I don’t think our society has perceptibly changed since my mother cared for both of my grandmothers. If you can afford it, you can hire care. My father’s care cost $50,000 out of pocket in his last year of life. Fortunately, my mother had me to get him a wheelchair when he couldn’t walk, pick up his medicines when he was running out, help her plan his funeral one Christmas eve. Medicare covered his hospital bed, but as for round-the-clock care, my mother was on her own. We checked with agencies, the VA, and others and we did not find anyone who could provide relief for my mother. My husband and I were the relief while working full time and raising three children. The stress on all of us was huge, even on my children who couldn’t understand why I was never home during the last six weeks of my father’s life. At that time, my supervisor pressured me to be more productive. I don’t regret anything I did during my dad’s illness to help my parents. But when someone is seriously ill or impaired, you are on your own.

  6. Mmelinda Smith

    Ironic isn’t? I was a health reporter too, but I had to leave my job because I had been absent or late too many times because of emergencies caring for my mother, brother and now my father. Employers have their limits on tolerance despite the benefits of the Family Medical Leave Act. In my situation, the care of my mother and brother went on for several years before they died within a two year period of each other. Now the focus is on my very elderly father with dementia. I have had a wonderful caregiving assistant to help me five days a week. Even with supposed tax breaks for “out of pocket” medical expenses for their care, I still had to dip into savings to pay her while I worked full time. I don’t know what I would have done without her, but paying her salary has meant the complete drain of my retirement savings and now the sale of the house my family has lived in for more than 60 years. Now here’s the irony: I had a demanding career in journalism and never married or had children. So, after caring for everyone else, who will take care of me when my time comes?

  7. Thank you for the good advice.

  8. Preisvergleich

    I think the people have to care about themself and forget the sugar. Thank you for the good advice.

    Regards Klas

  9. jphbear

    “elderly caregivers who are so distraught they [attempt] suicide just to get out of the situation.” No one attempts suicide to “just” do anything. Perhaps part of the medical establishment’s problem with overlooking caregiver burden lies in the enduring stigma against mental illness. Your article, although meant to raise awareness of the sacrifice and struggle of those who care for ailing family members, perpetuates the negative bias against those who are mentally ill.

  10. fairnesstips1

    Agree with Dr. Fabiny.
    good article.
    thanks

  11. Good advice and information thanks

  12. https://www.youtube.com/watch?v=pJlbMnwnYFw

    Thank sticking to all the information