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Frequently Asked
Questions
As a caregiver, you know your own situation best. And undoubtedly your PWC (person with CFS) and a great many others admire and appreciate your efforts. But if your goal is to care for this person over the long term, it makes sense to look after your own health, both physical and emotional. If you're like many caregivers, you've learned to put your own needs after those of others -- and as we'll see, that can have grave consequences.
Well, yes and no. CFS isn't fatal (unless your partner becomes profoundly depressed), but it can devastate lives all the same. Some doctors have said the daily pain of CFS is like the pain AIDS patients face in the last two months of their lives. Living with someone in that kind of discomfort takes a lot out of a caregiver.
Worse, since some people still don't take CFS seriously, some "friends" will say things to you like "He/She just needs to push past this hump." That kind of comment can be hurtful and can also make you doubt your partner. The caregiver's group can provide an outside reality check at times like this.
Yes, certainly, but not to the point of neglecting our own needs. This can happen more easily than you might think. A chronic illness naturally becomes the focus of attention, and friends and family will share your concern for your PWC. But at the same time, as a caregiver you're facing a host of issues that very few of these people can really understand. (Take the caregiver stress test to see how you're doing.)
Trying to suppress your negative feelings is NOT the answer -- they'll only build up over time. Nearly half of family caregivers say they have suffered from prolonged depression because of their caregiving experience. The best way to stay strong is to communicate regularly with other caregivers, who understand what you're going through.
Because those feelings are there, whether you accept them or not. A 1994 survey found that 69% of family caregivers consider frustration their most frequently felt emotion, followed by sadness, love, compassion, and anger, in that order. Ignoring these negative feelings leads to burnout and depression.
The first -- and often most difficult -- step toward long-term emotional health is to acknowledge these feelings. All feelings are legitimate, and occasional frustration or anxiety is normal. By acknowledging these feelings you are not being selfish or "betraying" your PWC -- on the contrary, purging frustrations by "venting" with other caregivers can prevent them from building into resentment, helplessness, and depression.
Taking care of yourself and taking care of your PWC are not mutually exclusive. In fact, coming to terms with your own doubts, fears, and frustrations is an essential step in cementing a long-term caregiving relationship. If you tell yourself that caring for your partner is your first priority, then it makes sense to ensure that you'll be strong enough to meet this responsibility. Look after yourself first.
Yes! This is a vital point. As in a "normal" relationship, regular communication -- particularly about frustrations and goal-setting -- is essential. And a discussion group should never supplant this. Certain issues do arise in a caregiving relationship, however, that it would be fruitless and perhaps hurtful to discuss with a PWC. For example, perhaps you feel lonely because of the social isolation that caregiving often imposes. If you have no "solution" to propose, then sharing this with your PWC may only induce feelings of guilt and anxiety. Sharing the same feelings with another caregiver who understands can help you feel supported and prevent resentments from forming.
Your devotion is admirable, but it's questionable whether you can sustain it in the long run. Remember, you are two people who must share the resources of one and a half. The key is balance -- if you were sharing a lifeboat you would apportion the resources equally. To do otherwise, in either direction, is a needless risk. Take the caregiver self-rating scale to assess how you're doing here. Be careful -- if you find you're consistently putting your partner's needs ahead of your own, then you're jeopardizing the very goal you're working toward.
Contact with other caregivers is essential for venting frustrations and gaining true empathic support. In a support group you can learn to manage stress and improve skills while helping others. By meeting others who face similar issues, you can learn coping strategies, begin to understand your own feelings and needs, and accept that some problems are insoluble. As emphasized above, such a group should not supplant or diminish regular communication within the caregiving relationship itself.
CFS-CARE is a free Internet discussion group for caregivers of people with chronic fatigue syndrome and other chronic illnesses. Topics include emotional support, communication, research, diagnosis and treatment, related illnesses, support mechanisms, community, and humor.
The discussion is conducted by electronic mail, so all you need is an Internet account with e-mail privileges. The discussion is unmoderated, the atmosphere is supportive, and no topic is off limits or "incorrect." You can join or drop the list at any time. (Note: In order to encourage free expression on sensitive topics, the discussion is currently limited to caregivers.)
If you're interested, just write to Richard Senior at richardsenior@onetel.net.uk with your full name, the internet e-mail address you'd like to use, and confirmation that you yourself don't have CFS, and we'll sign you right up.
By committing to a long-term caregiving relationship, you've joined the ranks of an often unsung but very special group of people. By committing to take care of yourself, you'll ensure that you can fulfill this role safely for the long term.
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Comments or questions? richardsenior@onetel.net.uk.
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