If I'm the primary caregiver for my parent with cancer, should I join a caregivers' support group?

4 answers | Last updated: Sep 14, 2017
A fellow caregiver asked...

I'm caring for my father, who has leukemia, and the hospital staff keep suggesting that I attend a caregivers' support group. I feel like it's my father who needs the support group, not me. Why does everyone keep suggesting this, and what are the benefits?

Expert Answers

Phyddy Tacchi is a psychiatric advanced practice nurse at the M.D. Anderson Cancer Center in Houston, Texas.

A caregivers' support group can be of enormous benefit. Caring for someone with cancer, whether it's a spouse, a close friend, or a parent, is a never-ending tower of stresses, one on top of another. No one else is going to understand unless they've been there themselves. I'm a nurse, but I also cared for my father when he had lung cancer, and I didn't understand caregiver stress and burnout until I went through it myself.

There's the fatigue and the sleep deprivation, for one; some caregivers do this job 24/7, or at least they're on call 24/7. Then there's the fact that your responsibilities expand exponentially the more incapacitated the patient becomes, so more and more is continually being asked of you. Just when you think you can't possibly do any more, you have twice as much responsibility. Then there's the anxiety and emotional fatigue from dealing with the ups and downs hour by hour, day by day, week by week. It's like a roller coaster you can't get off, and you can never get your bearings because you're dealing with constant uncertainty. And you have incredible guilt, because you never feel like you're doing enough, and you constantly feel like a failure because your parent is in pain and having side effects, and you can't fix the problems.

All of these stresses take a huge toll; we have research showing that prolonged care giving can predispose caregivers to serious illness themselves. We're trying to prevent that, and we know that one of the only things that works is caregiver support groups.

Meeting with other caregivers gives you the chance to share your stories and find out that you're not alone with some big secret you have to keep, and that's a huge relief. For example, it's easy to make a mistake of omission: let's say your parent has tremendous nausea so he refuses to eat and drink, and then he ends up back in the emergency room for dehydration, and you feel terrible. If you keep it to yourself, there's a huge sense of shame and failure -- but once you tell your caregiver support group, you find out that everyone else has made a similar mistake. You say, "I don't know what I'm doing," and the other people in the group say, "We don't either," and you feel enormous relief and get rid of some of that guilt and fear.

Guilt is the most wasted emotion; it doesn't problem-solve, and it's like a ball and chain around your ankle. In addition, it leads to paralysis. You start being afraid to do anything for fear of making a mistake. Joining a caregivers' support group is one of the best ways to inoculate yourself against guilt and enable you to stay the course during your parent's illness.

Community Answers

To add to Phyddy's response, you'd be surprised what benefit you can get in attending the support groups in that many have creative, successful solutions to problems that you have; additionally, they may prepare you for challenges that may be forthcoming.

Some people don't like to attend a support group, but find comfort and release being teamed up with a "buddy." Check if your care facility offers this phone connection, where you can call another person to talk in a more private way.   Cleveland Clinic Taussig Cancer Center has programs like this: www.4thangel.org. Good luck.


Azucar7751 answered...

I agree 100% with the Expert answer by Ms. Daneker. I myself am the only daughter of an eighty-one year old Mother who has advance cervical cancer. I tell you most days I walk around like a zombie and also being disable with Atrial Fibrilation taking care of my Mother, her appointments as well as mine is overwhelming. Although I have a Stepfather unfortunately I can't count on him 50% to help me out he drowns on a glass of water when Mom feels sick so the weight on my shoulders is enormous. Belonging to Caring.com has given me some peace and tranquility reading and sharing with others having similar health issues to mine giving me a sense of release which we all need at some point in time. One can't do it all alone or keep it to themselves it will play havoc with your health don't fool yourself.

Caring community answered...

Hello and thank you to everyone for your informative answers on this topic! Caring.com now offers a wide range of online support groups to help you connect with others with similar experiences. If you are specifically looking to join our Cancer Support group with support from caregivers and patients alike, you can find it here: https://www.caring.com/support-groups/cancer

Kind regards from the Caring.com Community Team