When you are the primary caregiver for a family member with a chronic, long-term illness, you will need help. As a caregiver for my totally disabled husband (he has the genetic neurodegenerative condition FXTAS), there is no way I can take care of all his needs, take care of myself, and handle all the responsibilities of our lives by myself.
Since becoming my husband’s caregiver over 10 years ago, so many people have told me to take care of myself and to get help from others. Although finding space for myself is often very difficult, I have found ways to guard my health, and I try to carve out time every day to do the simple things I enjoy. The part about getting help from others, though, is much more challenging. We live in a busy, fast-moving world in which we often don’t even know our neighbors, and people are so overscheduled that we are afraid to impose on others to take some time to help us. If only the people who told us we should GET help would offer to BE that help, even just a little (my help comes in the form of paid home health aides; I am very grateful that I can pay for them).
In the case of an illness or surgery which is short-term, family members and friends are usually eager to bring meals, run errands, or help in whatever ways they can. But again, this is a short-term situation, in which the ill person will regain the ability to be independent. Long-term, never-going-to-get-better illness is a completely different story. People are less inclined to bring meals or run errands on an ongoing basis, and it feels awkward for the caregiver to ask for such help on a long-term basis. There are many websites which can help the primary caregiver organize those who want to help; but they are presupposing that so many people will offer help that their offers will need to be organized—not so in chronic illness.
If people do offer to help, say YES. It is best to ask them to do what they enjoy—perhaps cooking, yard work, home repairs, shopping, sitting with the ill person so the caregiver can go out. What caregivers do NOT need is advice—this just puts more stress on us; we need to be met where we are and helped in small ways rather than suggesting huge fixes that would not be practical. My wish: just bring me food, since I don’t get great meals—after pureeing all my husband’s food, I have no energy left to cook for me. Sit down with me and let me talk; you don’t have to fix my situation—just let me unload a little. Care about me for a little while.
About the Author
Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband, Vince, since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS). Terri is on the Board of Directors of the Well Spouse® Association (https://www.wellspouse.org/), which offers support and resources for spousal caregivers.
She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving.
Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.
Don’t be afraid to come visit us: long-term disabling illness is very isolating, and genetic illnesses are NOT contagious.