We have set up a brain donation with Texas Tech. There is also one with Harvard we were considering. I didn't realize it is best to set this up way in advance. It is a collaboration between a pathologist, the University, and the funeral home. We just have to pay for the pathologist to remove the brain which is $650 here in Colorado. If you have set it up in advance sometimes the brain bank will pay for the removal too. Then we will have a definitive diagnosis (they think he has Lewy Body) and hopefully we will help in some small way towards the treatment/cure for this horrible disease.
If you have thought about donating - here is more info and I would encourage you to get registered in advance. http://www.ttuhsc.edu/centers/aging/documents/7572_proof5707.pdf http://www.brainbank.mclean.org
Hb had vascular dementia. We donated our bodies to the Anatomical Research Dept at Indiana University. His cremains will be sent to me when they've completed their use. No cost at all unless I want to bury the cremains. I'll put them in the woods behind my house.
In Florida, there is a program called Brain Bank. They require a doctor to review the medical records of the potential donor. My husband was accepted into the program in 2011.
When Phil died on February 14,2013, he was transported within 12 hours of his death to the hospital in Orlando,Fl. His brain was retrieved and his body was then returned to the funeral home to be prepared for his burial. The only cost to me was $300 for transporting his body.
In eight months, I will receive a detailed autopsy report telling me exactly what dementia Phil was afflicted with and if our children have to be concerned that they might one day have Alzheimer's.
I felt it was important that we do everything we can to help the medical researchers in their fight against Alzheimer's.
Yes, Thank you Shannon. My son and I have discussed donating my DH's brain and did not know where to start. Dh has has early onset (DX April 2008) and m Medical personnel has told me because of his massive weight loss and decline, he will probably pass before the end of the year. Looks like I need to make some calls soon.
Thank you so much for sharing this information!! My daughter (who lives in Lubbock, TX) and I went to visit Texas Tech about DH making a brain donation. DH was accepted. All the TT people were so nice, helpful and appreciative of the donation. They can also use funding donations to keep the Alzheimer's research going.
Last week, I received the autopsy results for my husband Phil from the Florida Brain Bank.
Phil had Alzheimer's and Vascular Dementia. I am happy to report that our children do not have to fear that their father's disease will be passed to them. The autopsy went into great detail of all that they found in his brain.
I am very glad I made the decision to donate Phil's because it is helping the researchers find the cause and hopefully the cure for this disease that has taken our loved ones.
The points made about this being arranged in advance are very valuable.
Thankfully, my husband had decided on full body organ donation several years before his competence was in question. He had executed legal documents regarding this. However, it was his hope that his organs be used for transplantation if possible.
Due to his sudden and unexpected death, it was not possible. So, his body was donated to an organization that would use any parts of his body for research. I could not choose, and they would not know until his body was received. The organization was wonderful. They arranged his transportation and then kept me informed. His ashes were returned to me and after a couple of months I received a detailed report on how his body helped research for various conditions.
I know this is a bit off topic but I wanted to share this in case anyone else is confronted with sudden and unexpected death and has to deal with how this may change previous arrangements.
abby* I have set up the body donation with an organization also. Had I thought this all through and planned ahead I would have done differently. But this way someone will still get good out of what is a sad situation. I set this up 6 weeks ago. DH is still here. I don't know how. Now mostly on autopilot. I know he would be happy with what we have done. He has always been so giving to others.
This is not easy, I know. But we do the best we can with what we are given.
On a side note, got some pictures developed Friday. I know I am one of the last holdouts on film cameras. A few of the pictures were from last year before DD and SIL deployed! We had gone out to dinner with two of the grown kids and family. DH looked like another person. He looks like half the man now. So much weight gone. I was up all night just thinking about it.