Dear Jewish Fairy Godmother:

What can I do to help a friend who has just been diagnosed with ALS?
Her health has been declining for the past two years. She has gone
from a vibrant public figure to a woman who needs a walker to get
from her recliner into her wheelchair. Her husband is overloaded
already caring for his 98-year- old mother. She has no biological
children, but does have adopted grandchildren (long story). I am her
friend and neighbor and usually run quick errands for her like library
books (my office is a block away) and specialty items from a favorite
store. But now she needs more and more help every day, and I’m
concerned the people who have been bringing her meals etc during the
most recent spate of testing and treatment may fad away with this
news. She is very appreciative for help but also very frightened, and
there is so very much to do around the house and in the bigger
picture.

Overwhelmed With Worry

 
Dear Overwhelmed:

There are two levels of support people who have received a terminal
diagnosis need. And be clear, even if it is a slowly progressing form of
ALS, there is no cure at this time. That doesn’t mean that any one of
her friend or family might not go first, but the prognosis is of
progressive decline until death. So the emotional level of support,
among family and the inner circle of closest friends needs to be
addressed first. Because the disease is not linear or predictable, it is
useful to first establish big criteria of needs: assists with meal
preparation or companionship in the house in the earlier stages,
compared to assists with bathing, eating, etc in later stages.

 
Fortunately there are many websites set up to support exactly this
kind of situation. One I know best is caringbridge.org, though I am
sure others are also good. It allows people to identify specific tasks
(e.g. a gluten free vegetarian dinner for two on a specific date, of two
hours of housecleaning) and friends to sign up to provide them. These
sits also allow the patient to give medical updates to people who care
about her welfare. Ask your friend if she wants help setting that up,
and perhaps offer to be her site manager (or recruit one). You are
right that a long haul will wear folks down. But it takes a village to
support us all in hard times.