‘Thank you for caring’
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 difference.

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 wellspouse@aol.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 info@nfcacares.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 don’t let your loved one’s illness or disability always take center stage.
• Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.
• Watch out for signs of depression, and don’t 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 one’s condition. Information is empowering.
• There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
• Trust your instincts. Most of the time they’ll lead you in the right direction.
• 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 America’s 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 doesn’t 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.
Lynn Nelson, Concord, N.H.

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, Fla.

I will never be able to explain the real hero I am married to. I’ve 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, it’s 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, Calif.

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?
Madeleine 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 it’s 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, Pa.

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 I’ve been ill, he’s been wonderful. He talks me through my panic episodes, tries to keep my mind up-to-date, makes meals when I’m 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 I’ve 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 dad’s 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 don’t 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 that’s 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.
Carol 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 didn’t; for driving 160 miles roundtrip to doctor appointments every six to eight weeks for the past 2½ 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 I’m 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.

Free
Crystallized by winter’s mask tree branches
 and foliage stand barren by still
While deep inside she cries out, Leave me alone
 this is my body, and yet
The chronic fatigue syndrome lays never still
 engulfing every moment of her being.

Her husband beside her trying to understand,
 but understanding very little.
She searches every corner, every Chronicle,
 everything in print for answers.
While carrying the CFS like a bag of rocks
 she goes onward just one step at a time, sometimes.

Never giving up hope, or trying not to,
 for 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,
Free.

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
The CFIDS Association offers a free brochure, "For Those Who Care," which describes the effects of CFIDS on a patient’s 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.