Aging Parents: How Dangerous is Caregiving to One’s Health?

11% of family caregivers report that caregiving has caused their physical health to deteriorate. [The National Alliance for Caregiving and AARP–2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] – Updated: November 2012

Family caregivers who are in good health are in a better position to help parents age well. No surprise here.  Reading the statistics about family caregivers’ health several years ago was sobering. The Family Caregiver Alliance’s  2012 “Selective Care Statistics Fact Sheet,” reports: “of those caring for someone aged 65+, the average age is 63 years with one third of these caregivers in fair to poor health.” The November 2012 report’s fact sheet is easy-to-read but long. However, it’s well-organized by topics–eg. gender, age, impact on working female caregivers, gender and care tasks–making selective reading easy. Example:

Impact of Caregiving on Caregiver’s Physical Health

While researchers have long known that caregiving can have deleterious mental health effects for caregivers, research shows that caregiving can have serious physical health consequences as well, 17% of caregivers feel their health in general has gotten worse as a result of their caregiving responsibilities. [AARP Public Policy Institute Valuing the Invaluable: 2008 Update. The Economic Value of Family Caregiving] – Updated: November 2012

Research shows an estimated 17-35% of family caregivers view their health as fair to poor. (Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. AARP Public Policy Institute.)  Updated: November 2012

Those who are more likely to rate physical strain of caregiving “high” are female (17% vs. 10% males) and older (21% are 65+ vs. 11% at 18-49). They have lower incomes (19% vs. 11% of those with an annual income of $50,000+), a higher level of burden (31% vs. 9%, of those with a moderate level of burden and 5% of those with a low level), and are living with their care recipient (29% vs. 11% who don’t live together). (National Alliance for Caregiving and AARP–2009, Caregiving in the U.S., A Focused Look at Those Caring for Someone Age 50 or Older, Bethesda, MD: National Alliance for Caregiving, Washington, D.C.) Updated: November 2012

Read Selective Care Statistics Fact Sheet

Who takes care of the caregiver? Or must we find ways to take care of ourselves?

Related Posts:

Aging Parents: Becoming A Caregiver–Life Changes in the Blink of an Eye

Another Christmas gift idea: A gift we give ourselves or others who are caregivers (and don’t already own it)–Passages in Caregiving.

As readers know, Help! Aging Parents takes no ads and rarely reviews books. That said, we’re always on the lookout for gifts to help parents–and elders we care about–age well. Books that help us as caregivers, translate into helping those we care about and care for.

Gail Sheehy’s book, Passages in Caregiving, was published in 2010. Research skills.The ability to ferret out what works. Commitment. Add these to Gail Sheehy’s creativity and journalistic experience. All contributed to one goal: to navigate through the healthcare challenges and maintain quality of life for her and her husband, following his surprising recurrence of cancer. Her book recounts their journey and more.

Many know the accomplishments of Gail Sheehy and her husband, the late Clay Felker. I wondered how applicable the book would be to “normal” people, who lacked the advantages of this couple. No need for wondering. Excellent writing skills and the ability of a seasoned journalist  who’s “been there,” produce a sensitive personal narrative. It also seamlessly combines interviews with diverse people involved in various caregiving situations with a wealth of factual information, helpful resources, plus distinctly-formated “Strategies” pages for many chapters–a comprehensive, interesting read.
*     *    *

Gail and her husband, who had been declared cancer-free after surgery to remove a “benign cyst” two years before, were suddenly jarred out of complacency and a very good life by “The Call” from the doctor. Clay’s cyst had come back bigger than ever, reported the doctor. That dreaded phone call, experienced by so many of us, changes life as we’ve thought it would be, or expect it to be, or have plans for it to be… in the blink of an eye.

“Dizzy from conflicting opinions, many delivered with more egotism than expertise, I didn’t know whom to trust. It began to dawn on me that my life, too, had changed radically. I had a new role.
Family caregiver.
I didn’t expect it. I wasn’t prepared for it. Nobody briefs us on all the services we are expected to perform when we take on this role……
…And I had no idea that nearly fifty million other American adults were stumbling along the same unpredictable path…..” (pp. 9-10)
*        *      *

Note: I planned to give my copy of Gail Sheehy’s book to a caregiver friend several months ago. Having moved to NYC 3 years before, remembering which unpacked box it was in proved a challenge. Once located, I reread it and decided not to part with it. It’s a keeper. Indeed, you will find snippets from it in future posts. (PS–my friend will get a new copy.)

Check out “Newsworthy” (right sidebar). Links to timely information and research from top universities and respected professionals, plus practical information–to help parents age well.

Aging Parents Needing Extra Care–Who Helps Best? Us? Others? What We Need to Keep in Mind

8 Things to Keep in Mind

1. “Take care of yourself before assisting others.” It’s important advice for plane passengers, and equally important for family caregivers.

Visiting my hometown, I find a neighbor, in her 70’s, caring for her husband 24/7. Their only-child daughter, in her 40’s, helps. She has moved to the house. Because of the physical (definitely not mental) impairment, she and her mother are doing their best giving 24/7 care. They try to “spell” each other so both get a break. Not easy. Think moving a grown man from, for example, home to car for appointments. Hadn’t seen this neighbor in a year. She looks very tired; another neighbor made the same observation.

2. Assisted living, in addition to cost, requires a move; and we know transitions like moving are difficult as one ages.

3.  Home health care 24/7 may not work well due to the relationship  between that caregiver and the adult children. Children may feel they’ve lost some of the special relationship with their parents if the health care person is the kind who takes charge and controls.

4. Parents may not like the caregiver, even when they’ve helped make the selection.
A good friend of Dad’s died a few months before Dad needed anyone. We learned his caregiver was available and were overjoyed. (It didn’t work out, Dad ultimately didn’t like him.)

5. Finding capable and honest caregivers is a necessity.
We all know stories about caregivers taking/stealing. It’s sometimes as difficult to distinguish if older people’s accusations are fact or fiction, as it is to prove honesty or dishonesty.

6. Agency caregivers are–or should be–bonded. That should eliminate vulnerability to taking/stealing.

7. Friends may know good, honest caregivers who are available.

Male caregivers are usually physically stronger and more inclined to talk about things that interest men.

Dad wanted–and had–male caregivers with him 24/7 during his last months. Options were limited. Friends knew someone who knew someone and things began to fall into place: one male caregiver 6 days and another on Saturday. Dad loved having guys to talk with–sports, cars, fixing things. And their physical strength enabled Dad to be up and walking a lot, so he regained his once-strong legs. The caregiver Dad liked best came after my phone call to a church (waiting for permission to hopefully state which one). While they have no “agency” I spoke with their volunteer employment specialist.

On the other hand, we had no stealing problems when caregivers were referred by friends or the church–but we may have been lucky. Friend-recommended caregivers are undoubtedly less expensive than agency caregivers. Obviously the agency charges more than they pay the caregivers–otherwise agencies couldn’t survive.

One size doesn’t fit all. What does fit all is the fact that 24/7 good family caregiving can’t always be good. We get tired, frustrated, concerned and cranky. We are emotionally involved. Many of us don’t think of–or if we do, don’t act on–the theory that we must take care of ourselves first, if we want to do a good job of caring for others. In short, respite and organized time off are legitimate and help family caregivers function better and thus, help parents age as well as possible.

Can Caregiving Families Do it All? 1
Can Caregiving Families Do it All? 2 Formerly Nat’l Family Caregivers Assn. Good resources here

Note: Link to UCLA’s “Management of Medical and Psychiatric Problems in Dementia” Free Webinar on August 21st. Details at right (Of Current Interest)

Help Aging Parents, Grandparents, And Loved-Ones: Can Care-giving Family Members Do It All? Continued

It brought back thoughts of Mother’s experience with a temporary feeding tube. Although we had someone to help part-time at home, I could manage it better (especially if it got clogged), once I learned how; yet I don’t remember how I “learned how.” What I do remember is that I could do all the stuff, but the thought (even before the doing) of causing any pain or hurt to someone I cared about, bothered me the most…and of course, still does.

So we learn our limits and our tolerance and our skills, but unless our calling is nursing-related (OK, I did want to be a nurse from ages 5-8), caregiving can involve so much more than we originally anticipate.

The New Old Age column states more than half the respondents undertaking these tasks felt they had no other options–either nobody would do them or insurance didn’t cover So caregivers just did it. More than half said they had no training from any source.

“How has doing these medical/nursing tasks affected your quality of life?” is the last survey question mentioned. “57% said “they felt they were making an important contribution;” 45% said “they felt closer to the loved one they were taking care of;” “40% suffered symptoms of depression;” 1/3 said they were “constantly waiting for something to go wrong.” Lastly, 1/3 described their own health as fair or poor.

Going back to the grateful old man with the white hair and kind eyes, takes us to his insurance. Based on the nursing tasks caregivers assume, it would seem caregivers need others to help shoulder some of the responsibilities. And since most lay people aren’t familiar with the details of President Obama’s healthcare plan, we have another responsibility: to learn if it provides ways for family caregivers to get some additional inexpensive help.

For many, caregiving is a part of helping parents age well until the end and we want to do our best. And when we invest a lot of ourself in something it’s difficult to let go. That’s normal. On the other hand, we need to know–and plan–how we can have some respite to keep ourselves healthy–physically and mentally. To quote the flight attendant on the airplane before take-off: “Make certain your oxygen mask is secured, before helping others.” Excellent advice, but perhaps easier said than done for family caregivers.

Related: Formerly Nat’l Family Caregivers Assn. Good resources here

Photo credits: Family Caregiver Support Program and
*                         *                            *
New: “Of Current Interest”(right sidebar). Links to timely information and research from top universities about cancer, dementia, Parkinson’s, plus some fun stuff–to help parents age well.

Help Aging Parents, Grandparents, And Loved-Ones: Can Care-giving Family Members Do It All?

The New Old Age column from a 10/16/12 NY Times recently surfaced. Its subject: family caregivers and the fact that they do many nursing tasks formerly assigned to professionals.

Speaking of “nursing tasks,” the Visiting Nurse Service of New York ran some–I think–wonderful full-page ads. For example, a photo of a nice-looking, elderly gentleman with kind eyes and white hair. The ad reads:

He’s 95, Takes 10 medications, Needs help bathing, walking and dressing,
And feels deeply grateful.

He’s “grateful to the physician who helped him get all the care he needs to stay out of a nursing home, with Medicaid Managed Long Term Care (MLTC) from VNSNY.” This is followed by text enumerating the Medicaid-covered home care and long-term care services, basically nurse care management and home health aide services.

Back to the New Old Age column. It enumerates the tasks family members now do (eg. give injections, manage feeding tubes, manage complicated medications), with “little training and no backup.”

According to the column, in December 2011 researchers commissioned an online survey, involving 1,677 caregivers for adult relatives or friends. Findings: 46% took on medical/nursing tasks in addition to providing ADA (activities of daily living) help.

Of these, 3/4 were managing–often 5-9–prescriptions, which could involve IV lines and syringes. More than 1/3 used meters and monitors. More than 1/3 “took on wound care and described that as particularly difficult.” That resonated! Thoughts of R’s recent non-healing wound.

I watched the unwrapping, cleaning, and rewrapping of R’s wound at the hospital wound care center this winter.  Cleaning the wound area of “debris” as they called it (I’d call it removing unhealthy and dead skin) was done only in a macro sense by those trained to do it. The area was tender initially and even removing the wrapping hurt. Indeed ultimately the truly wonderful doctor himself, took over cleaning the any remaining “debris” and putting on the ointment.

This is getting long. Conclusion tomorrow.