Has there been a discussion here about the pros and cons of having an autopsy done for the sake of the children and grandchildren's medical history? I found comments about gene testing for the children and think that it was decided that there were no up sides to having that done. I was thinking that it would be an advantage to know for sure if dx of AD had been correct and an autopsy is the only way to know for sure. DH was dx with EOAD and future research might be able to save our children and grandchildren from this terrible disease. There is so much collected experience and knowledge here that I would like to read your comments on the pros and cons of confirming AD with an autopsy for the sake of the children.
okrose--I haven't made this decision yet for my husband. However, you bring up a very good point. I have no doubt that my husband has EOAD, but many times patients get a mixed diagnosis of several dementias. I would think that it would be helpful for future generations if a concrete dx could be obtained by autopsy.
OKrose, I live in Florida and we have a Florida Brain Bank. Within 12 hours of death, a small portion of my DH's brain will be removed. I will receive a report within a few months telling me what type of Alzheimer Phil had.
I made the decision to participate in the study after speaking with our children. I know Phil would want me to do this so we can help find a cure for this horror called Alzheimer's .
okrose I also live in Florida. Brain bank sent me a ton of paper work to fill out plus requiring me to obtain all medical records from all over the place. The clincher was that I would have to pay to have my husband's intact body transported to and from Orlando for the donation. I opted lout.
I wish there had been an autopsy to confirm my grandmother had Alzheimers. My mother is now showing the same pattern and so many family/friends find ways to say it isn't quite Alzheimers. I haven't arranged donation for my husband with Lewy Body Dementia, but I would like to.
Bluedaze*, I also thought twice about the donation but it was very important to my children and grandchildren to know what type of Alzheimer's Phil has. What also influenced my decision was the fact I would be helping the reseachers in their search for a cure. I made the funeral arrangements for DH last week because as I noted above he is now at the end stage and the cost of transporting DH to Orlando is about $ 350.00. As we have always noted on this site, each of us has to make our own decisions concerning our loved ones. There is no right or wrong answer to any of the many questions posted here. Ruth
My mom did not have the brain autopsy and I wish she had..my uncle did and is brilliant brain was full of the disease. It is a wonder it didn't slide out his ears! Now my DH has it..and his X-wife has some sort of dementia too....I suspect AD..so I think I will have a study done under these conditions...at least I think that now. Neither would be considered EAOD but I have no idea what anyone in the bloodlines carried. DH parents were from Mexico and many relatives are there and who knows what health issues they have or had.
My children have begged me to have an autopsy performed when the time comes. I'm not sure my husband would want this but I agreed I would have it done for my children's and grandchildren's sake.
I think autopsy is a good idea just to know if they really had it, especially if they died earlier in the disease. My FIL's brain and eyes were donated to some research there in Boston but have no idea the outcome. I remember a member her a couple years ago that donated her husband's brain to research. He was diagnosed with AD but then took a sudden turn and died. Found out he had LBD as well as Ad. You never know. But, I for one would want it confirmed to be AD or whatever dementia they were diagnosed with.
When my husband died (8/11/12) they asked at the hospital if I wanted an autopsy and I told them no. There are no children or grandchildren and the last few weeks of his life were hell so I didn't want him to go through anymore. I know that sound stupid but that's how I felt and still do.
I don't remember discussing the subject with DH, but he would have agreed before he lost his cognitive ability. I had talked to doctors beforehand & arranged for his body to be taken directly to a local university to donate his brain. Then he was taken to the funeral home. This is still hard for me to write about years later, but I feel it can lead to a better understanding of the disease. Objectively it was an easy decision, but emotionally -- a different story. A doctor recently told me - I'm taking his word for it - that everyone who dies in New Zealand is required to donate their brain for dementia research. It is equally important for those of us who do not have dementia to donate our brains as well and, yet, I have not made such arrangements for myself.
As for the children, some people want them tested, I would not do that, altho my children are now adults--senior citizens, actually. But for society as a whole, I think that a brain donation is essential.
When Lloyd is gone, I just want him to rest in peace and this journey to be over! No autopsies...the fact that it is genetic is enough. Who wants premonitions of this. When it gets here is soon enough to deal with it. I would never want to spend my life looking for signs of this damn disease!!!
Linda Mc I'm with you 100% DW has suffered enough, my kids know the genetic issues, grandmother & mother. I don't want this disease to torment my family any more than it has for these 3 generations
I have thought about this but just don't think I can do it. DH's sister had az and lived with a feeding tube to such a terrible end. His mother probably had az although she died before the last stages his sister had. I don't think my sons want to know. Their attitude is "live 'til you die" because they are in line for heart attack and stroke from my side of the family. Every male member of my immediate family have had heart attack and/or heart surgery. yikes! can't win.
As autopsy to help family and decendents is one thing but we also need to do whatever we can to have the AD (or other dementia) listed on the death certificate.
For years AD deaths were routinely listed as pneumonia or heart attack. My Greatgrandmother died a dementia death in 1962 at age 85 after years in a SNF and her cause of death was listed as heart disease. It has only been family interviews about her that allowed me to see that she actually had ALL the familiar AD symptoms.
Now that there is a push to actually list AD/demenita as the cause of death it has 'suddenly' become the #5 leading cause of death in the US. The more times people 'die from AD' the bigger the problem becomes and the more attention and funding will come to it.
I understand all of your comments. But my kids are young enough that maybe if they and their doctors know what their father had, perhaps by the time they need it there will be a new way to prolong or treat the disease.