Seeking insights about brain autopsy

Vitruvius

Hospice called and reminded me to make final arrangements.

DW was weighed at 100 pounds, she’s 5’-7”, and this is a drop of nearly 3 pounds from her last weighing. Her aides have reported that she is only eating about 25% of the food offered her. She hasn’t opened her eyes in many weeks that I have seen, but they tell me she occasionally does when stressed by being moved. 

Hospice reported all this to me today, which I was already aware of, but they also reminded me that it would be best to make final arrangements now rather than the absolute last minute.

DW has a rarer type of dementia, Semantic Dementia, and she had her diagnosis confirmed by a specialist in rare dementias at a major medical center. At the time they noted that they no longer needed to autopsy the brains of Alzheimer’s victims but would be interested in those of rarer dementias for research purposes. Has anyone had this done and could shed some light on the possibility. My daughter and I have agreed that my DW would have wanted to help others escape this horrible disease.

I am beside myself as my DW nears the end and can barely do anything productive from day to day. She is only 72.

As always your thoughts and insights are appreciated. 

Shelly / Texas

Sending support………..

fmb

I have no experience regarding an autopsy, but want to commend and thank you and your daughter for considering this option. Having made DH's final arrangements last week, I know how hard it must be. I am so sorry.

M1

Vitruvius I think part of the answer depends on where you are. I also commend you for your efforts; preservation of the brain would need to be prompt. If you are in a major urban area it may be worth pursuing with one of the major medical centers that might have a dementia research unit. If not, it may not be feasible.

I am so sorry for your loss.

Beachfan

I am so very sorry , Vitruvius. Losing a loved one is traumatic enough without the added stress of heart wrenching decisions. May God be with you; you have fought the good fight. 💕

lenbury

I wonder consider what your loved one would want. That is, have they expressed a desire for organ donation in a living will or other document.? If so, I think they would want science to benefit for their experience. Good thoughts....

GothicGremlin

@Vitruvius I'm so sorry you're where you are now. I remember well when Peggy got to that stage and hospice told me the same thing. It definitely left me dazed for a time.

I can't really speak to the autopsy … Peggy didn't want that so I honored her wishes. For what it's worth, had I been in Peggy's shoes (with FTD & PPA), I would have wanted my brain to be autopsied for the reason that FTD and PPA (and the lopogenic variety is the rarest of the rare) are rare, and if an autopsy could help someone down the road, I'd want to do it.

72 is way too young.

Joe C.

Vitruvius, I have also been looking into brain donation. Attached is a link to the Brain Donation Project.

https://braindonorproject.org

Denise1847

https://alzconnected.org/discussion/70162/seeking-insights-about-brain-autopsy

I am so sorry for your pending loss and the pain you are experiencing. I commend you for your decision. We are defenseless against this horrible disease, but we can fight it from continuing to destroy the lives of millions at some future time. If I was asked about my DH's brain donation, I wouldn't hesitate, knowing that his suffering may help someone.

M5M

I believe if you contact the major medical center that gave you the diagnosis, they would make arrangements for the autopsy if you choose to go forward with it. I also think honoring her wishes would give you a warm level of comfort through the process.

M1

just one other point: unless this is done as part of a research project, there will be a substantial cost to you if you request an autopsy. They are not done routinely any more and not covered by Medicare.

Vitruvius

To answer a few questions:

• We live near a major university medical center with a substantial neurosciences department with research specialists in rare dementias. Due to her rare dementia she was referred there to confirm her diagnosis from the first nearby university medical center that saw her.
  
• When my DW renewed her driver’s license a number of years ago she decided she wanted to be an organ donor. Of course we never discussed the possibility of having a brain autopsy for research but I think she would have wanted to help others from having to go through this terrible disease.

I have contacted them and of course this results in a sequence of leaving voicemails getting a call back that refers to yet another person to leave a voicemail with etc.

I had asked the question here to get a perspective on the issue from caregivers, but I suppose few who would have had this done stick around here. But thank you all for your support and advice.