My parents died of natural causes when I was in my early 30's. My mother had emphysema and doctors said that it could be acquired (from smoking which she did) or genetic and an autopsy could confirm which. But she asked us not to do an autopsy. I was concerned that my children and I might have inherited the tendency if it were genetic.
Therefore I have given my children the OK to have an autopsy when my husband and I die, mainly to see if anything is discovered that may let them know if they and their children could possibly inherit one or more of our diseases.
One of my cousins recently died of heart problems and donated his body to the Medical College near him. I'm not interested in donating my whole body but it made me start thinking if there were a way to donate your brain only to research.
Do any of you know how one goes about arranging something like this?
We have signed papers for my husband's brain to go for medical research. It's easy to do. You should be able to ask the doctor caring for your spouse. We did ours through OHSU (Oregon Health and Science University) where they do Alzheimer's research. Also, I don't know how many out there are aware of memorial associations. They offer everything from cremation to tradition funeral services at about half the price. I've used this service for three relatives and am completely satisfied. It's good to have this done ahead of time.
If you have an Advance Healthcare Directive, you can specify in that exactly what you do and don't want done. They're very easy to do ... there are forms you can download from the internet.
Well ... the forms are easy in terms of downloading and following the instructions. It can be very hard to decide what directives to include. They say you can add your own, detailed directives, but I really didn't know what alternatives there are, or whether certain types of treatments are effective in situations such as AD. I found the booklet Hard Choices for Loving People (available free at www.hardchoices.com) very informative.
For a while we were going to UCLA. When DH died, I had him taken there instead of the mortuary and an autopsy was done to confirm that he had AD. They wanted to do it & it had been agreed to beforehand & I did not pay for any of it. Many people cringe at the idea of autopsy and many have religious convictions against it. My Mom died at 87 & we agreed to an autopsy. Being pragmatic, I think it is a matter of looking to our own well-being. Anything that can help those of us still living. If Frau Auguste had not had an autopsy, Dr. Alzheimer's would have never made his report in 1906 and we might still be thinking that people w/AD were possessed--or some such thing. Arrangements can be made beforehand w/your doc, at universities, hospitals, etc. Normal brains are also wanted, I guess as comparisons, and many of us have the same tangles & plaques that our LO's have but we don't have AD. And, no, I have not made arrangements for myself.
Duke here in NC had a program where they would ask you to say that you would donate your LO's brain at the time of death. We talked about it and agreed that it would be a good idea. By the time I contacted them, they said that they were no longer able to accept any more people. That was several years ago. I haven't checked on it recently. Nancy