Sunday, July 20, 2008

Tools for managing helping others deal with Cancer

A post from last night, by RivkA about how and why she started her blog to handle sharing information about her condition reminded me of something I've been asked to share a number of times on this blog.

One of the many difficult aspects of dealing with chemotherapy is that, often, when the person is first diagnosed, there is almost too much support, but, then, as the treatment continues for many months thereafter, the support dwindles, while the patient is left to cope with the enormous emotional, logistical and physical effects of treatment.

Here are a couple of tools to help manage the help and offers of help, so that it can be helpful:

LotsaHelpingHands is a (free) site I've used extensively in the past, (thank G-d, not in the past year), to help coordinate the wonderful and welcome, but overwhelming and time-consuming onslaught of offers to help someone deal with a long-term illness.

Processing these offers can often be as time-consuming as a part-time job, an added burden for the person with cancer and his/her family.

LotsaHelpingHands allows a person (preferably someone close to the family, but not an immediate family member) to become a "coordinator" who can transform the windstorm of people asking "how can I help?" and offering "call me if you need ANYTHING!" into actual meals, rides, babysitting, etc that meet the family's needs and schedule, without requiring the family to deal with the logistics.

The family gives the coordinator the guidelines, almost like a "gift registry" of help that would be welcome. Then, when people want to help, they are given the website, and can choose to offer something specific from the list of available needs. Details can be provided, such as dietary requirements, carpool issues, whatever.

The list can be kept totally private, and shared only with those that have been invited.

It can take a bit to set up correctly, and (maybe this has been fixed since last I used it:) there is a learning curve in the beginning that can result in an avalanche of e-mails until the coordinator learns the result of certain actions. But overall, it is a remarkably helpful tool.

It allows people from all the different social circles of a family's life to work together with minimal overhead. This tool prevents the typical situations of 17 kugels on Tuesday, with no meals for the rest of the week; exhausted patient having to explain and keep a complicated carpool organized while sitting in the waiting room for radiology when the helper can't run carpool because her own child was sent home from school with the flu; or a beautiful 4 course dinner waiting on the front step when the family planned to be away, just that one evening.

It worked best for me as a coordinator when I was given everyone in the family's home, work, and cell phone numbers, and when I sprung for domain name for our given site. This is not something available within the LotsaHelpingHands system, but I highly recommend it for being able to give out the website easily over the telephone, both for the coordinator's convenience, but especially for the family's convenience.

(Having an easy-to-remember domain is particularly helpful for sharing the site with large private networks of people. For example, if a teacher at a school is undergoing treatment, the website can be shared (with his/her permission) with the school staff and/or parents, allowing even those who don't feel close enough to call, to make a side dish for a shabbat meal, or offer an hour of babysitting. In this way, a coodinator who knows the family in one way, can help knit together help from all the different social networks that touch the famiy.)

This way, when someone asks, "How can I help?" they can be thanked, and directed to the website for followup. The person offering can then later look for something that meets his/her schedule and ability, and the person receiving can then use that time with the offerer to talk about larger (or lighter) things, rather than handling logistics or (more likely) declining by default.

I also found it most helpful, as a coordinator, to hold back, and sign up for the minimum necessary of the rides, meals, etc. in order to allow for others to fill these positions first. Coordinating this can be like a part-time job, and there may be times when there isn't time to call to find replacements when offers fall through or are retracted. Although it is tempting for a coordinator to fill in all the missing holes in the schedule, it is important not to get stretched too thin, because the coordinator will likely be the "pinch hitter", filling in for more last-minute things.

Being a coordinator is a major undertaking, but the website makes it feasible.

If it seems like too much for one person, it is also possible to have one person coordinate for meals, another for rides, another for babysitting, etc. These "co-coordinators" must all be able to communicate well with one another, because there will be inevitable crossover of offers.

Another organization that I have worked with and recommend highly is ChemoAngels.

(Warning: A first look at their site might make a non-Christian think it is a Christian-only site, but that is not the case. I have done this, and worked exclusively with Jewish, atheist, and non-religious patients. I have specifically avoided working with those who do celebrate non-Jewish holidays, as I wouldn't be able to help them celebrate their holidays appropriately, and it would probably be a let-down for them. Besides, there are many people within this program who are capable of meeting this need.)

ChemoAngels targets both those actively undergoing Chemotherapy (and/or radiation) and those who are elderly and shut-in, and matches them with a vetted and committed stranger, who sends letters, cards, gifts, trinkets, and cheer in the mail. Nothing is expected of the recipient in terms of communication, none of the gifts or cards need be acknowledged or reciprocated.

The recipient has to sign up for this. Getting someone to do so is the hardest part! Once signed up, the recipient fills out a form indicating personal preferences. One of my patients had a thing for penguins, tea, and lupines. Another preferred hand lotion and magazines.

It might seem corny to get support from strangers, but by all accounts it really works. Many of those who sign up to become "chemoangels" are cancer survivors, or family members of a cancer survivor. Often, when a patient "graduates" from being a recipient, she signs up to become a "chemoangel" for someone else.

Even if this program isn't your cup of tea, I recommend reading some of the material on the site that offers suggestions about how to be helpful and supportive to someone undergoing chemotherapy. (Hint: Don't send "get well cards" or offer unsolicited medical advice. Do send "thinking of you" letters/cards/notes and make up "waiting room survival kits".)

If this post doesn't apply to you, may you and the ones you love never need this information. If it does, may you and/or your loved one have a complete and speedy healing.

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teacherninja said...

Great info, thanks. A friend of my wife's is dealing with chemo right now; I'll forward this on.

Anonymous said...

D'aww....Gretta looks so cute in that picture....

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