March - April 1999
ĎThank you for
A tribute to CFIDS caregivers
Who cares? Family and friends often
do, beyond the call of duty,
beyond the duty of love. And for a person who is chronically ill and disabled, that care makes all the
Last fall, we asked you to tell us
about your caregivers. You told
us stories about extraordinary dedication, of patience and endurance in the face of great uncertainty,
of unwavering love and life-sustaining companionship. You recognized that caregivers often experience
the same loneliness, frustration and losses that PWCs feel, and they make great financial and social sacrifices,
essentially sharing this illness with their spouse or family member.
Your message to caregivers
was clear and consistent: We want you to know how much you are appreciated for all you do, especially
for believing in us and sharing our frustration.
Another message caregivers need to hear
is one that PWCs say is vital for them, too: "You are not alone." The National Family Caregivers Association
(NFCA) estimates that more than 25 million Americans are providing primary, daily care for a family member
with a chronic illness. In a survey conducted by the NFCA, these caregivers said they had discovered an
inner strength from being forced into their new role and that they had developed closer relationship with
the person they cared for, but they also suffered more personal illness, depression, sleeplessness and
great frustration. More than 40% of those in the survey provided constant care, and nearly half were caring
for their spouse.
Here are two organizations caregivers may find helpful. The Well Spouse
Foundation, which like The CFIDS Association recently celebrated its 10th anniversary, can help put you
in touch with support groups and provide general support and advice through its newsletter, Mainstay.
The organization can be reached at 610 Lexington Ave., Suite 208, New York, NY 10022, by phone at 800/838-0879,
or by E-mail at email@example.com . The web site is www.wellspouse.org
The National Family Caregivers'
Association can be contacted at 10605 Concord St., Suite 501, Kensington, MD 20895-2504, by phone at 800/896-3650,
or by E-mail at firstname.lastname@example.org
. Both organizations are similar to The CFIDS Association
in their education,
advocacy and support missions. Each November, they honor and draw attention to caregivers through National
Family Caregivers' Week.
On the following pages, we share sentiments and photographs of those
who wrote to convey their appreciation for those who care.
Ten tips for family caregivers
- Choose to take charge of your life, and donít let your loved oneís
illness or disability always take center stage.
- Remember to be good to yourself. Love, honor and value yourself.
Youíre doing a very hard job and you deserve some quality time, just for you.
- Watch out for signs of depression, and donít delay in getting professional
help when you need it.
- When people offer to help, accept the offer and suggest specific
things that they can do.
- Educate yourself about your loved oneís condition. Information is
- Thereís a difference between caring and doing. Be open to technologies
and ideas that promote your loved oneís independence.
- Trust your instincts. Most of the time theyíll lead you in the right
- Grieve for your losses, and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and a citizen.
- Seek support from other caregivers. There is great strength in knowing
you are not alone.
Reprinted with permission of the
National Family Caregivers Association.
NFCA is a not-for-profit, national membership orgainzation striving to make life better for all of Americaís
family caregivers. For information on NFCA, call 800/896-3650.
The person who loves and supports
me through my struggle with
CFIDS is my husband, Barry. For almost 10 years now, we have endured all of the ups and downs as a team.
He always lets me know that "we are in this together." He doesnít go overboard with pampering me. He seems
to instinctively know when to step in and help me complete a task and when to just hold back so I can
get the satisfaction of doing some things for myself. He lets me know through his actions that although
I have experienced much loss due to my illness, who I am can never be lost or taken away. He still respects
me, he still enjoys being with me, he still needs the love and support that I give to him, and he is still
physically attracted to me. He is my best friend and I love him with all my heart.
In the five years since I was diagnosed
with CFIDS, my wife,
Ann, has been the light in my valley of CFIDS. Ann has never doubted that I am ill, and she has given
up many personal leave days from her teaching job to carry me to doctor appointments. God has blessed
me to have such a wonderful, loving caregiver.
Don Sprayberry, Anniston, Ala.
His name is Harry. My husband takes
me at my very worst. He is
willing to sacrifice his lifestyle to fit my needs. He grows with me.
Sue Bazemore, Fort Pierce,
I will never be able to explain
the real hero I am married to.
Iíve been ill for as long as I can remember but became disabled in 1994, the year we got married. As newlyweds,
he supported me through all the insensitive doctors, misdiagnoses, tests and the many symptoms, and often
stayed up late with me trying to massage away the muscle spasms, cramps and pain. I feel, through it all,
instead of destroying us, this has made us stronger and closer.
Tracy in Missouri
My poor husband, Ray, is showing
the wear and tear of my CFIDS
over the last 15 years. We were always going places and doing things, but I have managed to find the strength
only for three trips, two years apart. If anyone deserves a reward besides the one he will receive in
Heaven from Jesus, itís him.
Opal Stokes, Fresno, Calif.
My family has never doubted the
existence or the severity of
CFIDS. This has been a great help to me emotionally. I owe a special debt of gratitude to my mother, Georgina
Sanchez-Tugman. At a time when she should be enjoying her golden years and life with my stepfather, she
has sacrificed her own needs to become my advocate, nurse and confidant. I could not have endured these
past five years of disabling illness without her loving, selfless care.
Marcia Sanchez, San Diego,
Lucie and Dr. G. Ross Roy, my parents,
Nursed me when I was mostly
bedridden, and they are supporting me financially again as I struggle to find work. They have never
uttered a reproachful word, only words of encouragement. Is there any greater kindness?
C. Roy, PhD, Scottsdale, Ariz.
My parents, Jean and Paul Behrens,
have sacrificed both financially
and emotionally for the 11 years that I have had CFIDS. They gave of their time, energy and resources.
And they have done it with respect, kindness and humor. They cared for me when I was bedridden in their
home. And for years since then, they have continued to do things that make it possible for me to live
on my own again. These good people are also great advocates for all PWCs. They educate many people, and
they subscribe to and read the Chronicle.
Judy Rogers, Versailles, Ohio
Scott, Karin, Briana and Brandon
Waller have loved me when itís
been hardest to love myself. They have taken care of me, even providing much custodial care before SSA
acknowledged the disability was real. After being seriously ill for nearly 10 years now, I am accepting
myself as I am and learning to live as the person I am, thanks to family members who never stopped believing
in me, pointing out my value, valuing my presence and perspectives.
Rhoda B. Donovan of Ardmore,
David, my husband of 19 years,
is the most perfect man ever.
I went from mother of four, a full-time job and a very active wife to an almost vegetable. In the two
years Iíve been ill, heís been wonderful. He talks me through my panic episodes, tries to keep my mind
up-to-date, makes meals when Iím unable (which is often), shops, cleans and runs our children wherever
they need to be. He also works a full-time job and a part-time job to make up for my loss of income. He
never pressures me to do more than I can and tells me when Iíve overdone it myself. I thank God every
day for him, his love and support.
Deborah Ann Lowery, Deptford, N.J.
As I struggled with CFIDS since
1986, my father, Michael, stood
by me. He took me to all of the doctor appointments and stood up for me when they and others said it was
all in my head. He spent countless nights sitting with me when I lost all cognitive functioning, had endless
pain and wished I could be as I once was. He kept me from giving up on the way to the pharmacy when I
had lost faith that yet another drug might help (that time, it did). I cannot forget the times he would
heat up soup for me when I was too sick to cook, even though he did not know how to cook. Soon after I
won my disability benefits thanks to his support and encouragement, he suffered a stroke and it was my
turn to be caregiver. We fought together. Finally, at age 83, Dad passed away. I am still fighting CFIDS
and fibromyalgia three years later, but I can feel my dadís spirit with me each day. He is still urging
me to keep up the fight.
Diana George, Dayton, Nev.
My primary caregiver is my sweetie,
Phoenix. The amazing thing
about Phoenix is that she is also disabled by lupus and rheumatoid arthritis and is in constant pain.
In spite of this, she helps me with nearly everything I do, all day long. I am functioning now at a fairly
low level, and I require a lot of assistance. Phoenix is always there, always with a smile or a laugh,
always trying to keep me from doing too much. I donít know how she does it. I know that she feels awful
most of the time.
Cindy Brown, Port Townsend, Wash.
Days ran into months and months
into years. Isolated, barraged
with symptoms, housebound for days and weeks at a time. Calls to physicians, rejection and derision, hopelessness,
despair, false hopes -- and she was there. Their lives confined, defined and restricted by CFIDS, the
trips and relaxation and time together were gone, yet she was there. Devoted, committed, doing what she
has to do because thatís the way she is, those are the vows she took and she faithfully, lovingly and
patiently fulfils them each and every day, each and every hour. He knows that no matter what, she is there.
Ives, Canton, N.Y., about her Aunt Marge Reilly, who cares for her Uncle Ed Reilly. Carol, like her Uncle
Ed, has CFIDS.
For my fiance, Rick: Thank you
for believing in me when doctors
didnít; for driving 160 miles roundtrip to doctor appointments every six to eight weeks for the past 2Ĺ
years; for encouraging me on the many days when I felt that my existence anchored in bed was meaningless;
for calling, visiting and bringing meals to my bed the first year of my illness; for shopping, cooking,
cleaning and doing yard work when you have your own household to maintain; for your continuing love, patience
and understanding; for your ongoing faith that I will one day be the active, happy and enthusiastic woman
you once knew.
Lori Meyers, The Dalles, Ore.
My husband, James, my friend, my
lover and my caregiver, married
me knowing I was ill. He was able to look past it and see the true me. He is always there for me, holding
me when I cry, encouraging me when Iím down, helping in whatever way he can. He does not complain, despite
all the pressure he must endure working and caring for me and for his daughter. I am not sure where I
would be without his constant love and support.
Diana Whiting, Atascade, Calif.
by winterís mask
and foliage stand barren by still
While deep inside she cries out, Leave me
this is my body, and yet
The chronic fatigue syndrome lays never still
every moment of her being.
Her husband beside her
trying to understand,
understanding very little.
She searches every corner, every Chronicle,
everything in print
While carrying the CFS like a bag of rocks
she goes onward just one step at a
Never giving up hope,
or trying not to,
hope is the only thing that will lead
her back to the beauty of spring.
One day she believes
she will wake
to the feelings of rest and walk onto the day,
Robert L. Allen of Coon Rapids,
Minn., wrote this poem for his
wife and shared it with others, "to let them know the ones without CFIDS do feel the pain and the loss,
and we care."
Caring for a person with CFIDS
CFIDS Association offers
a free brochure, "For Those Who Care," which describes the effects of CFIDS on a patientís life and relationships
with others. Written by psychologist Katrina Berne, PhD, the brochure offers many suggestions specific
for friends, partners, family members and caregivers. To obtain a free copy, send your request with a
self-addressed, stamped envelope (33 cents postage) to The CFIDS Association of America, PO Box 220398,
Charlotte, NC 28222-0398.