Today I received a call from the doctor at OHSU. She will be sending the full report in the mail, which I may or may not understand! This is what I was told today. There are 6 block stages in Alzheimer's, and Hank had all 6. Lewy Bodies was also occasionally present and probably came later. The Lewy Bodies is associated with the Parkinson's. Even so, the doctor seemed surprised that he went through a rapid decline over six weeks that ended in his dying. If any of you are thinking of brain donation I would encourage you to inquire. They were very thankful and the doctor said this does help in their understanding and research. Lord knows we need something. Other than that I hope all of us have something good come our way in 2009...
I wonder, would I unilaterally be permitted to donate DH's brain for research? Or is that something he had to do while still able to volunteer it?
Our Neurologist, Dr. Neville, is a fellow, a professor of Neurology at OHSU. We see him in WA though. I wonder if his office staff here would know the answer. Hmmm!
I would definitely ask. We signed papers at the very beginning of diagnosis. If you have power of attorney that might be enough, but I'm sure the staff at any hospital would know.
It is my understanding from my DH's doctors that is up to the next of kin----that would typically be the spouse----UNLESS there are other relatives who might complain (ie-children from a prior marriage). (And when you think about it, can any of our spouses really make that decision once they have the disease, although in our case, my DH volunteered to be in a clinical study, so that also gave me some confort level with the brain donation.) In our case, I have told our daughters that the ONE thing they are responsible for if my DH and I die together OR I predecease him, is to get his brain sent to the doctor for an autopsy! Since they are both worried about inheriting AD (despite the fact that we already know he doesn't have the "gene"), I'm confident they will do so. I also think it's important to have the contact information of the specific reasearch doctor beforehand. In our case, my DH's neurologist doesn't do this research, but another doctor at the same medical school does, so we have that information. According to the information we have, you need to call the doctor at the same time you are calling the funeral home, so they can coordinate.
So yes, the office staff of the neurologist should be able to direct you, that is where we got the information. And like frand, I would encourage everyone to look into this. Despite my DH's participation in his clinical trial (Elan's AAB-001), I really think the doctors are a long way from a cure because I think they still aren't sure what causes this awful disease!
Frand, glad you found out the result. I am going to make some calls regarding this. Not much on the Internet. I have the notation on my DL. But, I don't think that is the same situation as what you did.
While enrolling in a Late Onset AD Genetics Study a few years ago, my DW also signed consent papers for an autopsy. The family is still granted the option, however, of declining to have the autopsy done when the time comes.
When my FIL died in 1991 of AD, DH and our kids were asked if they wanted an autopsy. They all declined. I wish now they had had it done. It might make caring for DH a bit easier.
You are so generous for sharing this information with us Frand. Thank you.
When we entered the study at the Veterans Adm/Mt sinai hosp, they asked us to do that and we signed for it. My DH has 2 cornea transplants over his lifetime (from a WW2 injust) and I have no trepidation about it. Especially since it may help someone else. (like we who have not been dxd)
Frand- my spouse was just going along with steady slow decline and then boom within 6 weeks he went from feeding himself, dressing with minimal supervision (as long as I got out the clothing), was not incontinent and was walking, unsteady but walking. In fact we had him out to dinner Nov 9 at a fancy restaurant. It was like someone pulled a plug, incontinent, could not swallow (WAS on liquids and baby food) had to be dressed, many falls. He died Dec 20. I did not think about donating his brain and no one asked. Family has had bad experience with autopsy, but I probably would have considered just donating brain had I been asked. Doctors have to have the ability to really look at this disease. patricia
flouncy - I googled Braak and you are right. Thank you for knowing that! Interesting there are articles about Braak and Lewy Bodies, but I really don't know the significance. TheQueen - You are like me in that you experienced a quick death when you most likely didn't even consider that would happen. I've been thinking of this more in the last couple of days since I received the verbal autopsy report and just know with that much brain involvment we are better off for it all to have happened this way. Still, I like you, am still adjusting to how fast the decline went. Something else I been wondering - why didn't we just donate the entire body? There is no way to know for sure if something else was the actual cause of death, and I'm sure that would be helpful for research.
Very cool. I wish we had done that. I wanted to do an autopsy, but they told me it would be $3000. I didn't question it, and didn't do it. Is that what anyone else was told, about $3000 for a private autopsy?
York-I also looked into donation. All costs including transportation would have fallen on me, as well as obtaining all records at my cost. Don't need this!!
very glad you were able to get the results. I know you have been waiting for them. I wonder if these rules are different by state? I think I may look into it as well..... very honorable that he wished this. Much love Fran, as always you are in my thoughts
Hank was a part of research, so that might be the difference. There was no cost involved. So the question would be - can you donate and not incur costs when you are not a part of research? Maybe someone else knows that. Perhaps the Alz. Assn. would have that answer...
Good point Frand. My husband is part of a clinical trial, but the brain donation was discussed before that, and it is free of charge. Importantly, it is not a private autopsy, but a brain donation. I think the key is the physician who we contact is doing research, and in our case, she is part of a medical school. I would think the local Alz. Assoc. might have the name of the local physicians who do this kind of thing?
You can put into your Advance Health Care Directive that you want to donate your body, or any particular organs. If any organization wants something, then the donation is free (to you). Your closest relative will often receive a thank-you note from these organizations, but not always.
If you participate in pretty much any type of AD research, you'll probably be asked to sign a consent for a brain autopsy. This is because they do need to know whether your loved one actually had AD, or had another dementia syndrome.
If you don't participate in a research project, then you may have difficulty finding an organization that would be interested in autopsying the brain. Because they have no background data on the course of the disease (regular neuropsych exams, etc.), they would gain very little, if anything, from the autopsy.
If you don't participate in a research project and simply want an autopsy done for your own purposes, then you bear the costs yourself.
Something else to consider - should you have signed for body donation early on you may still not be eligible. Years ago Hank had that noted on his Driver's license. However, they don't want body parts from someone who has Alzheimer's. However, since we were involved in research I wish I had thought to inquire if they wanted the entire body. Because Hank died so quickly I think they would have found it helpful to know if something else (say prostate cancer) hurried things along. And, you have to accept that if you make this donation the body needs to be picked up as quickly as possible. For some that is not a problem. For me, I appreciated having a time of quiet when my previous husband died. For me I think that helped accept the finality of the dying and there was also that time of peace. With Hank, as soon as I noticed his last breath we called for the body to be picked up so they could get the brain to OHSU ASAP.
www.genesislegacy.org is a group for body donation. This is in Memphis, TN but you can go to the website to generally see how body donation works. I don't think it is for anyone with AD, but for others it is a great option. There is no cost involved and I understand from a friend who used this that they even provide $600 for a memorial at a funeral home or church of your choice. I couldn't see from the website how close you need to be to Memphis, though some of you may be in that region. Years ago I donated my body to the University of California in La Jolla and it was a similar program.
Maybe this post doesn't go here, but some of you may recall I had a very upsetting experience with the morturary. I filed a complaint with the local Chamber of Commerce and the state funeral and cremation association. Just recently I heard back that the state organization was taking disciplinary action against the mortuary, so it was worth the distress and effort to follow through. Hopefully no one else will be treated as I was by this particular business...
We had been going to UCLA & when we declined a particular research program, I thought that was the end of it. However, they kept calling us for one thing or another, questionnaires, etc. DH & I didn't mine, and they usually gave us a stipend which I sent on to an AD org. One time I asked why they kept calling and they said, "Because we want your DH's brain to autopsy, didn't you know?" Well, no, I didn't know, but I thought it was a good idea. When he died, I had him taken directly to UCLA before the mortuary, and there was no cost to me. I don't know if they did a full-body autopsy, but maybe there is something to that idea.
My 87 y.o. mother was being prepared for surgery when she suddenly died, they didn't know just why, she had some bowel obstruction. They wanted to do an autopsy and I agreed, again there was no cost to me--the hospital wanted it. I know some religions do not condone autopsies, and it is not always easy to be objective, but frand, and all the others, I commend you, it just doesn't seem right to bury possible answers to this dreadful disease.
My husband is also in a research project and they asked for us to agree to donate his brain upon his death. I immediately agreed, first becaue I believe in it, maybe it could help in researching this godawful disease, and secondly, he had 2 cornea transplants after having been blinded in WW2. If someone else hadn't agreed, he'd have been blind. Everyone should donate whatever can be used.