The Social Worker: On Monday Steve the social worker came back. Even though he came for the information session, Medicare requires him to visit as a social worker. Kathy slept through the whole meeting. He complimented me on how well I was taking care of Kathy. I guess we are the talk of the office. I think the key thing is that we have had a lot of advice and help for a few years now. Her doctors here and at the UConn HD clinic and all the different VNAs and aides have all contributed.
Steve talked about some other programs that might be of help to me or some of you in a similar situation. MassHealth has a cremation allowance for members who are indigent. It has a lot of requirements and stipulations but it is there. There are small, one-time gifts from the association of hospices. We are already receiving an energy subsidy. I have to keep Kathy’s room really warm. There are also nutrition related benefits like SNAP (I’m thinking about those). We talked about funeral homes, cremation and what happens when the Kathy passes away. A hospice nurse will come and do the “call” (time-of-death etc.). The police or ambulance shouldn’t need to be involved. There is a 48 hour waiting period before the body can be cremated. I think that is to allow the coroners to do what they need to do. He said he and Rachel would try to check into some of the costs for me. There are only a few crematoria in the region that will work directly with clients. There is some sort of ‘law’ in Massachusetts that a funeral home can’t be a crematorium and a crematorium can’t be a funeral home. I think it is more of a back scratching agreement than a law. But, what do I know.
My other option will be to donate her body for medical research, something I would be interested in. I will check into that with UConn. Donations to “brain tissue banks” are an important part of Huntington’s Disease research. There was one brain tissue bank that was destroyed by fire a few years ago, so there is a huge need. But, the brain needs to be harvested and delivered to the research facility within 12 hours of death or it is of no use. I don’t know how or if I could handle that. I’m just guessing that the last thing we need during the immediate period after death is another deadline. Of course it happens all the time with regular organ donation. I would still need to arrange for cremation of the body. When the whole body is donated, they cremate the remains after they are finished and we could still have a memorial service if members of the family can make it here. I am also intrigued by the idea of “green burials” where the body is placed in a fiber or wicker casket and buried. No embalming is done. A small tree can be used instead of a monument.
The Minister: That evening a nurse named Vivian came to check on Kathy. She was interesting and funny too. Vivian had been a full-time nurse at Mercy Hospital for many years. Then she decided to retire and enter the ministry. It ended up being bad timing due to the economy. She decided to go back to work per diem. When she heard there was work at Mercy she thought “Oh no. I don’t want to do that again at my age!” But it turned out it was for the hospice, so it had been fine. I guess she still does some sort of evangelical television ministry but since she was there as a nurse I figured I would leave it at that.
I should point out that Kathy has really been doing pretty well. I realize I seem to be talking about the team and the visitors more than Kathy. But her health seems to stable, steady and wonderfully boring for the last few weeks. I’ll take it.