Gail Sheehy: Sooner or later – much later – it dawns on you that your life is changing
radically, too.
You are developing a new role – caregiver.
And the biggest hurdle is that most people don’t identify as caregivers.
Women say, “Well, it’s just what I do as a daughter or as a wife.”
But it is a profession-level role today.
And, boy, do you need a circle of care.
Because this is a job nobody applies for, nobody’s been trained for it, you don’t
expect it.
A West Coast woman entrepreneur told me about the shock she got when her mother was immobilized
after a fall.
The entrepreneur said, “You know, I had nine months to prepare for the birth of my
child.
I had about nine hours to prepare for the dependency of my mother.”
In one in four American families, somebody is performing the role of family caregiver
for another adult who used to be independent.
And the average family caregiver today is a 49-year-old woman who holds a paying job,
spends at least 20 hours on the role, still has a child or children at home, and this
is all at the expense of her teenage children, her mate, her friends, and, most of all, at
the expense of her own health and wellbeing and future financial security.
More than half of American family caregivers hold full-time jobs and the caregiver spends
an average of five years in this role with the needs escalating.
She often has to give up her job and sacrifice her own future financial security.
We all feel like, “What am I doing wrong?”
The answer is nothing.
You're doing so much right.
I know you know that the presence of a family member who will act as a fearless advocate
is a matter of survival.
Well, the secret of caregiving success took me years to discover.
Quite simply, we cannot do it alone.
No one can.
We must create a circle of care.
And that’s why I wrote my book, “Passages in Caregiving” -- to try to show how.
Creating a circle of care means growing a network of family, friends, neighbors, colleagues
from work, and, most important, most valuable, veteran caregivers because they can show you
the ropes.
And maybe finding college students who are studying nursing or health sciences and who
would be willing to volunteer or might be able to gain credit for helping a family caregiver.
I recently learned from Dan Sokolow, who is director of the MacArthur Genius Awards, about
a unique, two-way communications platform that’s available on the patient’s smart
phone or on a landline.
It connects doctors and a long-distance caregiver in a healthcare team to create a network specific
to the individual patient.
Early Bird Alert – it’s called – is free and is provided only through approved
healthcare plans.
So it’s something I think you should check out.
As people are living longer, the global sweep of Alzheimer's will come with astronomical
costs for families and for public health budgets.
This is becoming a problem in every country in Europe and in Asia where the expected lifespan
is beyond 70 or 80.
Japan and a lot of European countries are aging faster than we are even here in America.
Dr. Sam Gandy, a neurologist and psychiatrist at Mount Sinai Hospital, is an international
expert on Alzheimer's.
I met with him this week to learn about a new test he’s pioneered that can pre-diagnose
the disease years before – maybe even decades before – the first symptoms appear.
He began our conversation with this sticker shock I’ll never forget: Every family member
who develops Alzheimer's will cost somebody a million dollars.
A milliondollars.
Why?
The average lifespan after diagnosis is ten years, and many Alzheimer's patients are perfectly
healthy in almost every other regard.
The caregiver can easily spend $100,000 a year to take care of a stricken spouse or
parent or in-law.
This epidemic is so disturbing that we mostly deny it and fail to address it.
But now there’s also some good news.
The onset of memory loss can be delayed and once the person has the diagnosis, the progression
can be slowed.
It’s very recently been proven that exercise has a delaying effect.
The best prevention is thirty minutes of cardiac movement or strength training at least three
times a week.
You’ve heard that before for many other illnesses, but also for delaying Alzheimer's.
The delaying tactic is mental engagement, but it has to be mental engagement with some
activity that the person really enjoys so that they will do it regularly.
And here is hopeful news for the caregivers of Alzheimer's patients: You can still interact
with a loved one who has mild to moderate disease by introducing creative activities
that are nonverbal.
There’s good evidence now that encouraging Alzheimer's patients to make art, to make
music, to sing, or to listen to music can bring them back to greater consciousness.
These nonverbal activities can call up memories they still do hold, usually from childhood,
and get them thinking about it and expressing it, and light up the part of the brain that
is least and last affected by the disease – the parietal lobe.
And that reduces the amount of drugs sufferers will need.
So, this is the wave of the future – nonpharmacological treatment – using the chemicals that are
naturally present in our brains.
But let’s be frank.
The Alzheimer's epidemic isn't going to be solved by running treadmills or doing crossword
puzzles.
It’s only going to be solved in the lab.
And so we must all advocate for a race to the cure of Alzheimer's.
And I mean advocate as loudly as AIDS activists did until public and private efforts turned
that terrible scourge of death into a manageable chronic illness.
Right?
Oftentimes, men don’t change until they hit the most serious of deadlines – a life-threatening
health crisis.
I’m going to close with a story about my husband to illustrate the point.
In his mid-sixties, my husband had radical surgery to remove malignant lymph nodes in
his neck.
He was upbeat all through treatment but afterward he slumped into depression.
It’s very common.
His former life as a magazine editor and publisher was unrecoverable in many aspects.
He found it hard to adjust to this new normal.
Two years later we were in another oncologist’s office who was telling us about a new cancer.
He said this is a low-grade non-Hodgkin’s lymphoma.
The median survival rate at your age is ten years, but since you have no symptoms and
early treatment does not improve your lifespan, I’m going to leave you alone.
Well, we said, “What, non prescription?”
And he said, “No.
My advice is go out and live your life, the two of you, and do something wonderful you
wouldn’t have dared before, and do it together.”
Well, we sat stunned.
This wasn’t the usual ten-minute consult with a physician talking to a dehumanized
patient.
This doctor was talking to my husband man to man, as a person of action and intelligence
who was just depressed by losing his former way of life.
And he was including me, the caregiver, as a full partner in our goal of healthy living
with cancer.
Well, we walked out of that office on a cloud.
But, clouds don’t hold you up for very long, so we had to act, strike out for some new
way of living and life that would stimulate and mobilize us.
Well, my husband spent a lot of time trying to get at what it was about his work that
he most loved.
He was a magazine editor.
He had been stripped of title.
Upsetting.
And I think anybody who has been through the first assaults of aging and disease needs
to go through that exercise.
Find out what is really, really important about you and what you and only you with your
unique concatenation of talents and experience can bring to the rest of your life and to
others.
We made it an exercise we often did together on long walks.
The answer for my husband took a whole year in coming.
And one day finally he said, “I love identifying and shaping young talent.”
Well, that suggested a teaching role, but an active teaching role.
And it was his circle of care – writers and artists and editors whose careers he had
nurtured – who took it from there.
They came up with the idea for getting a university interested in establishing a magazine center
where Clay could work with students, hands on, to learn how to make magazines.
The University of California-Berkeley was excited about it.
All we had to do was tear up the life we’d spent decades building in the dense world
of New York publishing and move three thousand miles to start over in the Bay Area living
like graduate students.
Well, we moved into a faculty apartment, we went back to the brick and board bookcases
and fighting over one bathroom, and then we found a running track overlooked San Francisco
Bay, and suddenly our horizons were unlimited again.
After running we’d walk down to a sidewalk café for lattes and hot oatmeal, and as East
Coasters, to sit outside in the winter reading the New York Times is a little like heaven.
Well, we were young again.
And we were in love all over again.
And that passage brought passion back into our lives – professionally and personally.
We were full of aliveness and hope.
The mind-body cure worked for us.
That lymphoma never came back.
We had a bonus life together of another ten years.
Well, I hope I’ve encouraged you to use a major passage as a transformative moment
to educate adults from their earliest to their latest years, how to make healthy passages
across the lifespan and how to create their circle of care.
And I hope each of you will start today – right here in the middle of your professional network
– to reach out and start building your own circle of care.
Thank you.