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by Tina Wellman, PNE., Ph.D.
Hanging in the Balance
When the toils of eldercare endanger
the health of the caregiver
Life is a journey. It unfolds and occurs in successive phases,
which we try to guide with planning. We plan our education, our
career, our family, our children’s education, our retirement, and
our twilight years. As life unfolds, we can encounter some unexpected
and unanticipated detours.
A most profound detour one’s life can take is to care for a
dying loved one. Not for days or weeks, but for years at a stretch.
With the exorbitant cost of nursing home care, a great many will
experience a long term, in home caring for one or both parents.
This can lead to a life-on-hold.
Most of us have computers. They are impossibly complicated
and come with minimally useful instructions. The support hotline
number is supposed to save us from endless frustration. Then we
discover the “Dummy” manuals at the bookstore, and the light
comes on. There we find instruction books we can understand,
like Internet for Dummies or Tax Preparation for Dummies. What if
there were a manual titled Caregiver Safety for Dummies? Such a
book could save the exhausted, war-weary, caregiving veteran a
multitude of sorrows and endless frustration.
Jacqueline Marcell, former TV executive producer and current
national spokeswoman and advocate for caregivers, has taken
this journey.
Jacqueline sacrificed everything: career, opportunity, and most
importantly, her own health to help her ailing parents. And now,
the author of the best seller Elder Rage has granted totalhealth
an interview that should be a wake-up call to the whole baby
boomer generation. Jacqueline gave up her life to care for her
parents. And now she is fighting for her life.
CARE FOR THE CAREGIVER
Tina: Jaqueline, what has happened to your health since publishing
Elder Rage?
Jaqueline: I developed breast cancer. It was during Breast Cancer
Awareness month (last October) that I spontaneously announced
my battle with cancer. Quite timely, since November was National
Family Caregivers Month. And, yes, I was taking advantage of the
momentum while the media was still open to discussing the
issues.
Tina: Do you relate your present health crisis to the stress incurred
from caregiving for your parents?
Jaqueline: I think my own rage and the stress of caring for my
parents for several years, while foolishly ignoring my own
health, contributed to the breast cancer I’ve battled all year. But
finally, I’m back to my advocacy work on behalf of caregivers but
with an added insight and mission.
Tina: In many cases, people will withdraw socially and embrace isolation
when faced with the increasing workload of caregiving. What
prompted you to make your personal journey public rather than
putting it behind you?
Jaqueline: Overwhelmed caregivers have a 63 percent higher
premature death rate than their peers because of stress and
inattention to their own health. I was under the most incredible
stress of my life while caring for my parents (both with
Alzheimer’s disease), and I was so infuriated I wasn’t getting
the help I needed from the professionals I turned to. That’s why
I wrote Elder Rage, so that no one else would have to go through
what I did.
Tina: What is first and uppermost in your mind to mention to our
readers regarding deferred health maintenance for caregivers?
Jaqueline: Pay attention to your health and take advantage of readily accessible information resources including my book
and radio show. Everyone asks if I will write Cancer Rage next.
No, but I am including the topic in my speeches, interviews, and
on my own Internet radio program, "Coping With Caregiving,"
heard worldwide on www.wsRadio.com/CopingWithCaregiving.
Over 600 interviews with health care professionals are available
for free, online listening-on-demand. Since my illness I have featured
numerous breast cancer specialists, because I know I can
help prevent others from going through what I have, and even
save lives.
Tina: Give us some numbers. Some statistics, that is. How many of
us is this affecting? Are the chances of contracting cancer escalating
in proportion to our involvement in caregiving?
Jaqueline: It seems odd, but I never felt better than when I was
diagnosed with invasive breast cancer. I had no symptoms whatsoever,
until I felt the lump myself—my "light bulb" moment as
Oprah would say. I've had so many false alarms over the years
with cysts that were always benign, so I assumed this was just
another one. Since there was no history of breast cancer in our
family, I mistakenly thought I was immune. I was so stunned to
learn that 85 percent of women who develop breast cancer have
no history of it in their family, and that more than 1.2 million
women worldwide will be diagnosed this year.
Tina: What is the most serious issue confronting the caregiver?
Jaqueline: In a nutshell, caregiver "stress," incurred by the awesome
responsibility assumed in a caregiving role. In the natural
progression of caregiving, the caregiver can readily arrive at
their wit's end, as they cope with an elderly loved one who
makes unreasonable demands on their time, suffers memory
loss, yet refuses treatment, becomes depressed, manipulative,
distrustful, critical, or hostile. Elder Rage teaches the caregiver
how to obtain an accurate diagnosis and treatment for
dementia (Alzheimer's is one type), and techniques for managing
difficult behaviors. It includes resources for navigating
the maze of eldercare. The caregiver however, must manage his
or her own health care in tandem so that they can function at
their peak in their caregiving role and survive in good health
once this role is completed.
Tina: What about those for whom the helpers are few to none?
How does a caregiver find respite from caregiving if he or she is the
only source of care for the patient? Where do caretakers go to access
the best support given their caretaking situation?
Jaqueline: Now, with caregiver stress and breast cancer added
to my missions, I emphasize the importance for caregivers to:
1) Attend a support group as soon as caregiving duties begin; 2)
Enroll elderly loved ones in Adult Day Care; 3) Ask for specific
help from family and friends; 4) Closely monitor their own
health and 5) For women, perform regular self-exams and have
yearly mammograms no matter how busy they are.
Tina: And what about those who cannot afford to place their loved
one in a nursing home or in a board and care facility? How does one
conserve and yet provide adequate care?
Jaqueline: Ask for help from family, friends, professionals.
Additionally, refer to my book (I wrote it specifically to provide
caregivers resource information) and tune into my radio show
for caregiver tips from a variety of health professionals well
versed in their field.
Tina: When one year becomes ten: How does the caregiver break
the cycle of depriving one's self of a health maintenance routine?
Jaqueline: Hopefully sharing my testimony will inspire others to
take preventative measures. After surviving a lumpectomy, six
months of dense-dose chemotherapy, a double mastectomy
(with complications), and 28 radiation treatments, I feel compelled
again to turn a devastating experience into something
positive by telling my story to help others. My doctors say stress
probably didn't cause the cancer directly (the cause of breast
cancer is unknown), but that the prolonged stress of caregiving
compromised my already weakened immune system (from a
series of stressful situations). Then I foolishly put off my own
checkups and mammograms, which let the cancer grow
unchecked for several years. I payed a big price for delaying my
own health care.
Tina: Any closing thoughts? What is your message of hope and
inspiration for other caregivers? And for the public—how do we
increase public awareness and sensitivities for what caregivers are
now (or soon to be) going through?
Jaqueline: That is the purpose of my public forum, to be a voice
for caregiver advocacy. That is, my missions have been: funding
for and the importance of early diagnosis of Alzheimer's disease,
prevention of elder abuse, neglect and exploitation, care
for the caregiver, and funding for Adult Day Care Services. I testified
before the Assistant Secretary on Aging about the need for
more national funding and delivered a keynote address to the
Florida House of Representatives on this and numerous eldercare
issues.
The National Association of Women Business Owners
(NAWBO), honored me with Advocate of the Year at their
Remarkable Women Awards, and the National Adult Day
Services Association (NADSA) presented me with their National
Media Award. Its been wonderful to be recognized for my work,
but when a life threatening illness strikes and you lose your zest,
not to mention all your hair, the honor you want most is the
Lifetime Cancer Survivor Award and I am going to do everything
in my power to make sure I get that one!
I learned caregiving the hard way, and now breast cancer the
hard way, and I'm committed to bringing attention to these
issues on a national scale.
Tina: Thank you, Jaqueline, for sharing your very personal struggles
and triumphs with our readership. Your message underscores a
theme in totalhealth magazine: to practice "preventative health"
in order to avoid catastrophic health maladies. We wish you the best
of health and continued success in your professional role as caregiver
advocate.
For further information, read: Elder Rage, by Jaqueline Marcell.
Web sites: www.ElderRage.com and
www.wsRadio.com/CopingWithCaregiving.
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