Marilyn's ALS home care

In 2012, I was diagnosed with ALS.  By 2013, my condition required that I be wheelchair bound and that I need 24-hour care.  I paid for it by raiding my retirement accounts, until the money ran out in September 2014.

Then I was on Medicaid, but Medicaid covers only 15 hours per day.  Three home care aides have loyally kept working for me, even though unpaid for 9 hours, and struggling financially themselves.  Two of them are people I have known for many years, volunteering at the Ten Pound Fiddle, an all-volunteer nonprofit folk music organization.

I expected that the sale of my house would provide funds to pay them after I die, forgetting that to receive Medicaid, I agreed to a "resource recovery plan", which means my only asset:  my house.  Over the last year, Medicaid has paid for home care as much as my house may be worth.

Now I receive hospice services.  ALS has progressed so that I will probably die soon. I am more needy than ever.

I feel frustrated and guilty that I can't pay just compensation to these exceptionally compassionate professionals.  I began to hope when two friends told me about gofundme.com.

Whatever folks give will go to pay three aides taking care of me 'til death do us part.  And I will die with a clearer conscience.  Remember what I have learned:  what goes around, comes around.  

I am grateful for the opportunity to volunteer, very grateful for the help from my three aides, and VERY VERY THANKFUL for everyone who can and does contribute.