Tuesday, February 22, 2011

If there's anything I can do ...

When you are struggling with PSC and the transplant waiting game, people want to help out. They want to know how you are doing, and they want to support you. And so they say "let me know if there is anything I can do."

I always struggled with this, because while I really really appreciated the offers of help and the genuine care we received from our friends, neighbors and church family it wasn't always easy to pinpoint exactly what someone might be able to do. We didn't need child care (no kids). We didn't need help with yard work (not much of a yard). We didn't need meals, and we didn't need anyone to clean the house or run errands for us ... I usually had plenty of time to take care of those things. Nonetheless, people kept asking.

The difficult part about this is that so many people genuinely wanted to help. Turning them away felt wrong, but the idea of coming up with some way for them to lend a hand created more stress. I just had other priorities.

In talking with others who are currently in the midst of PSC or some other health crisis, Carl and I think we have sort of nailed down why "is there anything I can do to help?" is such a tough question to answer. This might be somewhat hard to explain, but I'll do my best. When you are dealing with a potentially terminal illness or recovering from a transplant, you have a lot on your plate. Coming up with lists of things you need is just one more thing to add to the to-do list. Some folks might actually have a lot of stuff they need help with -- but the idea of making a list and delegating items on said list to everyone who wants to help (and even keeping track of who the people are) is overwhelming (if not impossible). And honestly, I don't think the caretaker or the patient needs this extra burden.

I didn't have a solution four years ago, but I think I have one now -- appoint someone to do this for you. A gatekeeper, so to speak, who coordinates meals, arranges for household help, returns phone calls and updates your Caring Bridge site. This can be your best friend, your next-door neighbor, your cousin, etc. (anyone trustworthy and reliable who has the ability and desire to take this on). Trust me, you probably have several people in your life who would be honored to take on this role! This person will keep in close contact with you, so they can find out what you need most, and then they can pass along information to others who are asking.

All of this coordinating and arranging can, of course, be accomplished with email, phone calls and spreadsheets -- but I recently learned of a couple of super cool web sites specifically designed for this purpose.

Take Them A Meal is a "free online tool for coordinating the delivery of meals to someone in need." I haven't used it, but it seems like a very efficient, effective and hassle-free way to handle meal delivery.

The other LotsaHelpingHands allows you to create a free community page where people can sign up for various tasks. So, if you need someone to mow the lawn or to give you a ride to a medical appointment, your delegated coordinator can post the task. Potential volunteers can then see the specific needs and sign-up to meet those needs. I love this idea!


Amanda said...

Dawn, your blog has already been a huge help to me. Your story thus far has just about mirrored my life. I've even started a blog. We meet with the transplant team on March 24 & 25. Thank you for all of the much needed information.

Dawn said...

Hi Amanda -- I'm so glad our blog has been helpful to you! I will catch on your blog, too. I hope the appointment the transplant team goes well. It always feels like such a long wait.

Ellen said...

Thanks for this post Dawn. It has some really helpful ideas. I just started a blog about my husbands impending transplant as well, but these suggestions are really great. If you want to look it is 'A Liver Runs Through It'.

Dawn said...

Hi Ellen! Thank you. I'll definitely check out your blog.

Susan said...

Dawn, I'm in the process of being screened for a living liver donation for my dad. He has cirrhosis and is in need of a transplant. Your blog has been very helpful and informative. Since I live in Florida and my dad is in Connecticut I was worried about traveling post surgery. Glad to see you both were able to get home safely after surgery. Thanks for the great information.