Managing the Help

Emotional Care - October 28, 2012

It's just part of human nature: when people hear that someone they know is facing a serious illness, they want to help. But sometimes people with good intentions can create more stress for the people they're trying to support.

When my husband was sick with cancer, we were flooded with offers of help from family, friends and acquaintances—so many that we couldn't possibly accept them all. It was wonderful to have so much love and support poured on us. Strangely enough, though, it also created more challenges. Some friends showed up with meals that we could not eat due to my husband's dietary restrictions. Others gave us gift certificates for services that we couldn't use. People offered to help with tasks around the house that we just didn't feel comfortable allowing them to do. The sense of guilt and ungratefulness that we felt was sometimes overwhelming. We greatly appreciated the kindness and good intentions behind these generous gifts and offers, so it was awful not to be able to accept them.

How do you deal with this conundrum?

First and foremost, I recommend that you not worry about offending people. It is fine to politely decline the help and gifts you can't use or don't need. At the beginning of my husband's illness I was very concerned about hurting others' feelings if I didn't accept their help. After a few months I realized that between caring for my husband, doing my job, and dealing with the rest of life's challenges, I simply couldn't manage other people's feelings. I gave myself permission to say no—politely, of course—and it was one of the most liberating things I've ever done.

I strongly recommend that you designate a close friend to help you coordinate offers of assistance. You can spend some time with your friend looking at your schedule, analyzing your needs, and deciding on the kinds of support that would be best for you and your loved one. Your friend can then handle communicating with your other friends and family about what they can do for you. Having someone else handle that communication will eliminate the need for you to be in the position of accepting or declining offers.

You can also refer people who want to help to some online resources. There are free scheduling programs online (such as MealBaby or meal Train) where friends can sign up to take turns delivering meals or running errands. These websites can be very useful in keeping offers of assistance organized.

It's a good idea to create a "user guide" for people who are visiting and/or assisting your patient. Have a friend who's a skilled writer meet with you and the patient to discuss what's helpful and what's not so helpful. Create a list of questions or comments that might upset the patient, things to say or do that would make the patient feel better, and anything that might be alarming to a visitor, such as symptoms or reactions the patient may undergo. Have your writer friend create a summary of this information in an easy-to-read format, which you can then furnish to friends and family before they visit. Most people will find this extremely helpful. We often don't know what to say or how to behave around someone who is very sick, and having a guide makes it more comfortable for everyone involved.

Finally, my most important recommendation is to remind yourself that accepting help from other people is one of the kindest things you can do. Remember that the people who want to help you and your patient want to be there for you and do whatever they can for you. It is an act of generosity to allow others to support you. Don't short-change yourself and others by declining all help. Find a way to communicate your needs and politely decline what you don't need. Above all, remember that allowing your community to be there for you in your time of need can be an incredibly healing experience for you and the patient in your life.