Pre-planning and Huntington’s Disease

CAREGIVING: I spent some of my birthday looking into funeral and cremation options for Kathy. It’s not something we want to think about or plan for. When I was a kid one of my friends lived in a funeral home. His mom and dad ran a funeral home in Fitchburg MA. I remember when he had a birthday party we went into one room. A man in a funny hat was sleeping and we tried to wake him up to see if he wanted cake. He kept sleeping.

I may do an Indiegogo Fundraiser to raise money for her care and final expenses but I am still researching everything and pre-planning. I wanted to avoid going through a traditional funeral home partly to save on costs; and partly to take a more creative approach celebrating Kathy’s life. This would also give family members a chance to come out for a life celebration or memorial service.

Cremation: I found a few services online that offer cremation directly to consumers. There is a company in Southern Vermont that services Western Massachusetts. I liked what they were saying on the web site at least. Every state has slightly different rules governing cremation or burial. In Massachusetts, funeral homes are not allowed to run their own crematories.  There is a 48 hour waiting period after death before cremation can occur. I assume this gives the coroner or medical examiner time to rule out foul play. Rachael (the spiritual advisor at Mercy Hospice) gave me the name of one cremation service in the Boston area called Casper Cremation that, despite having a pun of a name, offered a reasonable priced, dignified cremation service. They are actually a funeral home but use local crematories. There is also some money available through the Massachusetts Department of Transitional Assistance for cremation of the indigent.

BrainbankAnatomical Donations: The other option is donating your body to science. I had read about the “brain bank” at Harvard Medical School in several Huntington’s articles and Bonnie at the UConn Huntington’s Program recommended them also. I got in contact with them to see what was involved with a brain tissue donation. The Harvard Brain Tissue Resource Center distributes samples for neurological medical studies. Tissues from the brain bank were instrumental in developing the first genetic marker test for Huntington’s Disease. Samples are used for research on neurological diseases that are in the news every day: Autism, ALS, Parkinson’s and Alzheimer’s and concussion related studies. Since I am devoting so much effort to finding treatments or a cure, this is the direction I am heading.

I was worried that Hampden might be too far away from Belmont, where the brain bank is located. The brain has to be harvested, refrigerated and brought to the researchers within 24 hours. I started to think I was adding the stress of a deadline to an already stressful time. But the more I thought about it, having a plan was better than sitting there trying to figure out “What now?”

Joe, the donation representative at the brain bank emailed me with a lot of information and ideas. Western Massachusetts is still considered “local.” He also gave me the name of the coordinator of the Anatomical Gift Program at UMass Medical School. They work closely with the brain bank and could coordinate the whole thing. Kathy’s ashes would be returned to me for scattering or burial.

Dianne Person from UMass gave me a call and we had a chat about the process and timing. She is sending me a packet of information and pre-registration forms. I was correct that it is very time sensitive.When Kathy passes away the hospice nurse will come and confirm the time of death and call UMass. They will contact a funeral home they work with in our area who will come to get Kathy’s body. They are the only ones that can transport to the medical school. People from the brain bank will gather what they need at the school. They work closely together. It was interesting chatting with her. I told her how when I was in art school we went to Upstate Medical Center in Syracuse to draw cadavers. It was an amazing experience. It turned out Dianne was an ex graphic artist and art student. It is interesting how people move from one field into another.

I have started filling out the forms even though Kathy is doing pretty fine. There is even a chance that she could get moved out of hospice and into palliative care. I gave her a haircut today and did all the usual things. She has nine lives. I’ll take all of them.

These are some links for those interested:

Western Massachusetts Crematories
Casper Cremations
Anatomical Donations at UMass Medical
Harvard Brain Tissue Resource Center