What I’ve Learned from the Family Caregivers I’ve Treated

Barry J. Jacobs, Psy.D.

Crozer-Keystone Family Medicine Residency—Springfield, PA

www.emotionalsurvivalguide.com

Who I Am The only healthcare

professional on this TEDMED panel

Clinical psychologist, family medicine educator and frequent writer and presenter on family caregiving

BUT many caregivers think healthcare pros don’t get them or understand caregiving

WHAT ABOUT HEALTHCARE PROFESSIONALS? There are many things wrong with our health

system (See my answer to Question #1) There are many times healthcare

professionals are insensitive to family caregiver concerns

But many professionals are themselves family caregivers!

MY FAMILY’S STORY

Here’s my father in his early-20s dancing with his mother. He was the apple of my grandmother’s eye. She was loathe to let him grow up and be on his own.

My father didn’t get married to my mother until he was 36. My grandmother often placed herself between them.

When I (on the right) was 14, my father was suddenly diagnosed with brain cancer. My mother and grandmother proceeded to struggle over control of his care. After he eventually died, they didn’t speak to one another again until the day of my wedding, 18 years later

My family’s caregiving experience weakened our bonds to one another. Because of the family dissension, our suffering was compounded. I grew up and became a psychologist in order to help other families handle the rigors of caregiving better than my family did.

THE STORY CONTINUES… My family experiences as a teenager inform my

clinical work. So do more recent family experiences: About two years ago, I moved my mother and my step-father, who has advanced Alzheimer’s dementia, up from Florida to live in an apartment near me. We go to doctors (many), day care programs, nursing homes.

Like many other professionals, I learn all the time about family caregiving from these frequently difficult personal experiences.

WHAT SHOULD HEALTHCARE PROFESSIONALS KNOW? As a psychologist, I

served on an American Psychological Association Presidential Task Force (2010) that created the Caregiver Briefcase website: http://www.apa.org/pi/about/publications/caregivers/index.aspx

PROFESSIONALS (cont.)

The 150-page website defines: What psychologists should know about caregiver

activities, stress and potential psychological risks Clinical techniques for helping caregivers Up-to-date research on family caregivers Providing education to psychology students about

caregivers How to advocate for family caregivers Support resources to suggest to family caregivers.

PROFESSIONALS (cont.)

As a family medicine educator, I co-wrote an article in 2008 with Montreal family physician Mark Yaffe (above) on what medical schools should be teaching budding doctors about family caregivers. Read the article here.

Among the topics we cited are: techniques for evaluating caregiver burden, family health belief models, and roles for physicians to play in order to better acknowledge and help family caregivers

WHAT PROS STILL NEED TO LEARN FROM CAREGIVERS The lived experience of providing

daily care

Practical wisdom gained through solving myriad caregiving problems

Frustrations with dealing with the healthcare system

Sources for resilience and determination

LEARNING (cont.)

I’ve learned the most from family caregivers by asking them:

“Why do you do what you do for your loved one?”

In a 2006 article on “Honoring the Mission,” I’ve recommended that all healthcare professionals start their conversations with caregivers by first understanding the caregiver’s sense of purpose and motivation. Read the article here.

THE CAREGIVER MISSION Francine, a 60-year-old woman taking care of

her 82-year-old, demented father in her home, told me:

“It gets annoying sometimes and it’s really hard. But it’s also like a privilege or a gift that it fell into my life path. That I could give back to him for all he did for me. It gives me a sense of worth to make a difference in his life”

MISSION (cont.)

Sam, a 56-year-old man taking care of his wife with kidney failure:

“Who’s going to take care of her if I don’t take care of her? Nobody. She’d be all alone and just die. If anything happens to her, I don’t want to have to feel guilty. I want to be able to look back and know I did the right thing.”

MISSION (cont.)

Frank, a 74-year-old man taking care of his wife after her stroke:

“I came up in a Christian home with good scruples. I admit there are times that I’d like to just take off because it’s been so hard. She’s been incontinent at times. But I have my morals. And she still has a sweet attitude.”

MISSION (cont.)

Tara, a 50-year-old woman caring for her bed-bound mother with emphysema:

“She never really treated me like she loved me when I was a kid. She always treated my brother much better. And now where is he? He stays away from her when she needs him. I’m trying to do my best with her. Maybe she’ll love me yet.”

MISSION (cont.)

Todd and Stacy are two siblings in their forties taking care of their demented father:

“We were always much closer to Mom than Dad. He was rough and distant. But we promised her before she died of cancer that we’d take care of him. Otherwise, we probably wouldn’t be doing what we’re doing for him now. I hope she’s looking down on us and feeling happy.”

WHAT I’VE LEARNED

A caregiver’s sense of purpose bolsters her against the deleterious effects of long and often unappreciated sacrifice

The purposes range from the spiritual to family loyalty to the avoidance of guilt

When I ask, listen carefully and honor caregivers’ missions, they allow me into their worlds of experience and emotions

LEARNED (cont.)

Healthcare pros that can connect to family caregivers on that level of meaning and emotion are in the best position to be effective healers and guides

LEARNED (cont.)

What I learn from family caregivers, I also apply in my own life—pondering my own missions, bolstering myself to do my best with my own family

Doing our best at family caregiving is in itself an enriching experience that can affect the way we view life in all regards.

Read more.

The Emotional Survival Guide for Caregivers by Barry J. Jacobs, Psy.D. (Guilford, 2006)