For Caregivers

When a loved one falls ill with a chronic illness, it often falls on family members or a spouse to provide care. In the case of ME/CFS, care can be required for a few months, or years, or it can be life-long. This can be taxing for both the person with the illness – who often feels guilt at imposing such a burden –  as well as for caregivers, who feel helpless and may simply do not know what to do.

WHEN YOUR FRIEND IS ILL

Friends are especially important to people who fall ill with ME/CFS. As well as being incapacitating, ME/CFS is a terribly isolating disease. People with the disease tend to lose friends rather quickly once they are no longer able to participate in social events.

How you can help your ill friend:

• Believe he or she is ill. Over the past three decades the media, as well as many doctors, have promulgated the view that ME/CFS is “all in your head.” It isn’t. When your friend describes a symptom, don’t attempt to talk him or her out of it. Just listen.
• Unless you have experience treating ME/CFS, don’t offer treatment advice. What works for other diseases doesn’t necessarily work for ME/CFS.  Some of those treatments, no matter how benign they may sound, may make the illness much worse.
• Offer concrete help. “What can I do for you?” are golden words. If your friend is too ill to ask, offer your services. You can offer to take him or her to the doctor, or help with housekeeping. You can make sure your friend is eating properly. Your friend may also need help filling out forms for disability or insurance forms.
• Avoid comparisons. While it may be tempting for you to share that you also feel fatigued, or that other people are even worse off than your friend – don’t. Your friend is experiencing something that you have not. The only thing you can do in this situation is to listen and try to understand.

WHEN YOUR PARTNER IS ILL

Unlike relationships between children and parents, or between friends, relationships with partners imply mutual dependence. One partner may have taken the lead by being providing emotional support, consolation and encouragement, while the other has provided material support, or has been a sounding board for making decisions. However you have arranged your partnership, ME/CFS will force it to change.

Strong marriages and partnerships will survive a chronic, debilitating illness, but only if both partners are willing to let go of some of the assumptions inherent to their relationship. In this respect, ME/CFS is a challenge like none other.

What you can do:

• Don’t panic. Your spouse is still the same person he was before falling ill. He is just dealing with an awful illness, which may lead to some unpredictable behavior. As he recovers, he will be more like himself.
• Don’t pressure her to get well. It is natural to want to be a “cheerleader” and encourage your partner to “fight” in order to get better. But remember that nature has a hand in the course of an illness. Too much cheerleading will result in feelings of guilt or failure if a treatment doesn’t work.
• Help him or her to plan treatment decisions. Having a plan is one of the best ways of coping with treatments.
• Let go of expectations. This goes for both of you. The more you expect your relationship to be as it was, the less it will be.
• Believe your partner. All those strange symptoms are real. Your partner is not making any of them up. Just listen, and try to help figure them out by reading as much as you can about the illness. (Ignore all articles that say exercise and therapy will fix this illness. Neither of those has proven effective.)
• Get educated. It will help tremendously if you learn about the illness. Your spouse may be too ill to read.
• Go to doctor’s appointments with your spouse. This is especially important if you are a man and your partner is a woman. Doctors tend to treat female patients less dismissively is there is a man listening.
• Stay calm. Feelings of anger and frustration are normal when one’s spouse suddenly becomes incapacitated. You can express these feelings to other people, but not to your spouse. While ME/CFS is not caused by stress, it is certainly exacerbated by it. Maintaining a calm environment is essential for recovery.
• Have faith. People recover from ME/CFS, even after long periods of time. Let your partner know that you believe she will recover.

WHEN YOUR CHILD IS ILL

There is nothing worse than watching your children suffer, and if they are very ill, your heart will break on a daily basis. The heartbreak becomes even more terrible if you are ill yourself, and truly understand the kind of pain they are suffering.

It is not uncommon for a parent and a child, or even several children, to have ME/CFS simultaneously. While some people consider this to be proof of genetic involvement, it could just as easily be exposure to the same pathogen. In either case, you, as a parent, must not blame yourself for your child’s illness.

When a child contracts a serious illness, responsible parents to feel as if they have somehow let their children down. Mothers will frequently go back to their pregnancies. Was it something they took, or ate, or were exposed to that set their child up for this illness? Was it something in their genetic code that they passed on? How did they fail to protect their child?

While all of these questions are natural, they are fruitless. ME/CFS can strike anyone, at any age, of any race or ethnic group, at any time. During the Lyndonville, NY outbreak that occurred between 1985 and 1987, 200 people were affected. Thirty-six of those were children. Their parents had done nothing wrong, in fact, in most cases, one of the parents was also affected. They were simply in the wrong place at the wrong time.

What you can do

• Don’t blame yourself. Your child will realize this if you do, and it will make life harder for him or her.
• Become your child’s advocate. Most school systems to do not consider ME/CFS to be a “real” disease, or don’t acknowledge that it can strike children. School officials may say your child’s illness is psychological (“school phobia”), or will refuse to uphold the provisions of the Americans with Disabilities Act, or other national governmental mechanisms that are in place for helping ill children. You will have to fight for your child, even if you are ill yourself.
• Don’t hold your child to previous standards. “You can’t see your friends until you do your schoolwork” is a phrase that must be abandoned. It is more important for your child not to feel isolated than to complete homework.
• Don’t let your child see that you are distressed because he or she is ill. In the case of children, honestly is not always the best policy. Try to be their rock in a stormy sea. They need you to be calm, competent, and in control, because they aren’t.

Parents of patients with ME/CFS bear an especially heavy burden. Not only must they care for their ill children, but they suffer right alongside them. There is nothing more heartbreaking than watching one’s own child suffer. Spouses and partners also suffer when former companionship is reduced to the bare minimum. In both of these situations care must extend, not just to the person who is ill, but to the caretakers as well.

WHAT YOU CAN DO FOR YOURSELF

When your child, spouse, partner or friend is suffering, you will feel it too. And with the additional responsibilities of caretaking, you may feel overwhelmed. There is so much to contend with.

• The health care system, with all its complexities and faults, is deeply frustrating both to patients and to the people who love them. If you have never dealt with insurance companies before, you will feel like tearing your hair out.
• The stigma of ME/CFS may rear its ugly head when work associates, friends, or even family members suggest that getting well is just a matter of willpower, or that a little exercise will fix the problem. You may want to strangle them.
• The disease may change the way your loved one behaves, and there may even be times when you won’t recognize him or her. This is deeply distressing to family members, especially to children when a parent falls ill.

All of these experiences are common among caregivers, not just for ME/CFS but for all chronic, debilitating illnesses, and the same rules apply to all caregivers.

• Be flexible. What doesn’t get done today will get done tomorrow.
• Get out of the house. Doing something that doesn’t involve caregiving will help you retain perspective.
• Eat nutritious food, and get as much rest as you can. It is important for you to attend to your own health.
• Allow yourself to experience pleasure. Even though the dearest person in the world to you is ill, there are still things that you can enjoy. You will not be betraying your loved one if you do things you find pleasurable.

Further Reading

Living Well With Lyme Disease: 5 Tips to Be a Better Husband in ‘Sickness and in Health’ – This article was written by a man whose wife has chronic Lyme disease, but what he says applies to anyone with an ill spouse.

Resources

The Gurney Guide – Severely ill patients can’t travel upright. Neither can they sit in a waiting room. The Gurney Guide offers a complete set of resources to help caregivers transport their loved ones safely (and horizontally).

Caregiver Guidance (from the Bateman Horne Center) – What to do when someone with ME/CFS crashes.

Caring for people with ME/CFS who are bedbound – An 8-page fact sheet from Emerge Australia.

Effective Communication Strategies For Carers. ME/CFS article from Emerge Australia

ME/CFS Explained For Carers. This page will provide you with information to help you understand the symptoms people living with ME/CFS experience and how they might affect their ability to participate in everyday life. It will also provide guidance on the available supports and some practical steps to help you manage.

Caregiver resource kit – This site is geared towards Medicare, but there are also personal stories, tips on how to take care of your own needs, and how to care for a loved one with a chronic illness.

ME Partner Caregivers Support Group – This group is sponsored by MEAction. See schedule for dates and times.

Family Caregiver Alliance supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions.

Empowering Caregivers provides a safe, nurturing site for all caregivers with emotional and spiritual support and as well as online and off-line resources for caregivers.

Caregiving.com is a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family.

CFS Caregivers – CFS-CARE is an Internet discussion group for caregivers of people with chronic fatigue syndrome, fibromyalgia, and other chronic illnesses. Topics include emotional support, communication, research, diagnosis and treatment, related illnesses, support mechanisms, community, and humor.

Family Voices  is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.

The Caregiver Action Network serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

10 Organizations Caregivers Should Know. This helpful article describes ten organizations that offer support to caregivers. There is also a useful sidebar with articles that cover the best podcasts for caregivers, best care giver blogs, and other resources.

OMF Letter for Medical Providers on Caring for People with Severe and Very Severe ME/CFS.

Well Spouse Foundation
PO Box 801
New York, NY  10023
Toll-free telephone: (800) 838-0879
Local telephone: (212) 644-1241
Website: http://www.wellspouse.org/

The Well Spouse Association advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. The Association offers peer to peer support and educates health care professionals and the general public about the special challenges “well” spouses face every day. The Association coordinates a national network of support groups (please see their website for an extensive list), publishes a newsletter (Mainstay), advocates on behalf of caregivers, and helps families cope with the emotional and financial stresses associated with chronic illness.