My mother is 77 and has end stage dementia, probably Lewy body. She has been placed in hospice care. We are considering donating her body for research. Anyone have any experience with this?
@Titansfan, yes our family has had 100% excellent experience with "Willed Body Programs", so much so that my partner and I have signed up for same.
Here is a link which gives contact details of three local-to-Kentucky Willed Body programs as well as alphabetically those in other states (I don't know if this is a comprehensive list):
I encourage you and your dear mother to consider this, as the donation of bodies helps medical students, researchers, etc to learn and, ultimately, to help the whole world. We all benefit.
We contacted our local program: they sent us easy-to-fill-out forms, we sent the filled-out forms back to be added to their system, and received a credit-card sized hard plastic ID card to place in wallet, so that anyone can grab the info card from the donor's purse or wallet and dial the phone number immediately upon loved one's death.
They also sent us big magnets to place on the fridge to alert emergency personnel (who will often look in fridge for medications, and on fridge for emergency instructions) that one has signed up for a Willed Body program. Card and big magnet both make totally clear to phone 24/7/365.
We live in California, so chose the University of California Willed Body program. Even if we are travelling throughout USA, we were told if the unthinkable occurs and one of us dies, to immediately dial the toll-free phone number which is answered 24 hours per day 365 days per year, and if the deceased isn't near the "home" research hospital, they will do their best to find another research hospital to accept the body. In our case, we are big travellers so we are comforted knowing the process is easier and better-thought-out than we had realized.
Your dear mother is probably so frail that travel isn't in her future, but I wanted to write the above paragraph for other people who might be considering donating to their local Willed Body program and wondered what would happen if they were travelling.
For our family members' deaths, in one case a professional caregiver happened to realize death had occured so immediately phoned the toll free number on the card, then phoned us. We jumped in car and were there in less than an hour, and were amazed that the gentleman from the Willed Body program was already there with a discreet hearse-like vehicle (that didn't scream hearse or death, it was just properly capacious) and medical wheeled cot. He waited for us to say a last tearful goodbye, then gently covered our loved one's body, gave his condolences to us so respectfully and truthfully, then trundled the body to vehicle and that was that. We waved goodbye thru tears.
In the other cases, we happened to be with our loved ones as they failed, so knew when they died, and followed the identical procedure as above. In one case the program person asked if they could collect the body in two hours rather than immediately, and that was okay with us; we knew our loved one was finally out of agonizing pain, and was in a better place. I don't know what would've happened if we had refused to allow the delay in body pick-up.
In each case, we within days received a professional letter of condolence and letter of thanks for our loved-ones' generosity in agreeing to participate in the Willed Body program.
In the county where one of our family died, their program has an annual or bi-annual event where the bereaved can all come to honor their dead. In another county they sent us a packet of flower seeds to sow and as flowers come up, remember the beauty of our loved one's life well-lived, and beauty even in death.
In our case, the bodies are eventually cremated, and there is NOT the possiblility of getting the cremains. That is okay with us, we know our loved ones are healthy, vibrant, happy and beautiful in Heaven. We want to remember that, and not their ill final days.
I hope this helps, and will be thinking good thoughts for you & your mom for her final days.
Human body parts are such a wonderful gift to those who need them. So not only consider research but donating to those awaiting a cornea transplant, heart, kidney, liver, human tissue or whatever else.
I had a medical procedure years ago that involved the transplant of tissue to repair a defect that I never knew I had before I became sick. I asked where they got it, and the doctor said that no one had ever asked him before. He said, "It's from a cadaver." Some might freak out at this info, but I felt only deep gratitude to the person who donated her/his body for that purpose.
Setting this up now for my wife. https://brainsupportnetwork.org They can arrange brain and/or body donation. Extremely helpful and caring, and they coordinate everything.
Nice for something positive to come out of this terrible disease, contributing to research towards a cure.
Also, a definitive diagnosis with an included pathology report will bring some sort of closure and information for children.
A thoughtful and caring decision by your family IMHO.
Research is the only way to help find cures for diseases. Donating organs (or your body) is a very selfless act. I signed up as an organ donor through the DMV.
My husband was diagnosed with FTD a few years ago. We have everything set up through the Brain Support Network to donate his brain. We are in Ohio but have been told his brain will be sent to Jacksonville, Florida for research. They will send us an detailed report and we will know for sure if he has FTD. The Brain Support Network is very easy to work with and very appreciative of us being willing to donate his brain.
My MIL ( still alive) told us she filled out paperwork to donate her body to the local large medical school at a state university. Try a university or a medical school.
I should add that the university is keeping MIL body for the medical students to learn for 2-3 years . Then the donor program has her cremated and will be sending her ashes to my husband .
This is in South Carolina but the FAQs give a lot of insight that are probably similar to other programs. I don't know if they accept donations from out of state or not. The way she described the process, it was handled with the utmost respect and dignity. Since you say "maybe" Lewy body you may want to be sure a brain bank is involved and this may give you some answers. One thing to be aware is it states that there is a difference between being an organ donor and a research donor so be sure you are connecting with a program that will do what your family prefers.
Somehow I am not comfortable with whole body donation yet, but since my husband has agreed to be an organ donor I am seriously considering arranging for his brain to be donated along with any organs and tissues that can be used. They may be handled by different organizations. Another friend tried to donate her husband's brain but was not able to do so because she had not arranged it prior to his death. Different programs have different policies so definitely begin identifying facilities you may want to consider and contact them now to know your choices. If possible I definitely would be more comfortable making the decisions and arrangements ahead of time rather than when I am dealing with a death.... and of course those decisions can also be rescinded at any time before.
Here is a link which gives contact details of three local-to-Kentucky Willed Body programs as well as alphabetically those in other states (I don't know if this is a comprehensive list):
https://ieds.online/body-donation-programs-by-state/
I encourage you and your dear mother to consider this, as the donation of bodies helps medical students, researchers, etc to learn and, ultimately, to help the whole world. We all benefit.
We contacted our local program: they sent us easy-to-fill-out forms, we sent the filled-out forms back to be added to their system, and received a credit-card sized hard plastic ID card to place in wallet, so that anyone can grab the info card from the donor's purse or wallet and dial the phone number immediately upon loved one's death.
They also sent us big magnets to place on the fridge to alert emergency personnel (who will often look in fridge for medications, and on fridge for emergency instructions) that one has signed up for a Willed Body program. Card and big magnet both make totally clear to phone 24/7/365.
We live in California, so chose the University of California Willed Body program. Even if we are travelling throughout USA, we were told if the unthinkable occurs and one of us dies, to immediately dial the toll-free phone number which is answered 24 hours per day 365 days per year, and if the deceased isn't near the "home" research hospital, they will do their best to find another research hospital to accept the body. In our case, we are big travellers so we are comforted knowing the process is easier and better-thought-out than we had realized.
Your dear mother is probably so frail that travel isn't in her future, but I wanted to write the above paragraph for other people who might be considering donating to their local Willed Body program and wondered what would happen if they were travelling.
For our family members' deaths, in one case a professional caregiver happened to realize death had occured so immediately phoned the toll free number on the card, then phoned us. We jumped in car and were there in less than an hour, and were amazed that the gentleman from the Willed Body program was already there with a discreet hearse-like vehicle (that didn't scream hearse or death, it was just properly capacious) and medical wheeled cot. He waited for us to say a last tearful goodbye, then gently covered our loved one's body, gave his condolences to us so respectfully and truthfully, then trundled the body to vehicle and that was that. We waved goodbye thru tears.
In the other cases, we happened to be with our loved ones as they failed, so knew when they died, and followed the identical procedure as above. In one case the program person asked if they could collect the body in two hours rather than immediately, and that was okay with us; we knew our loved one was finally out of agonizing pain, and was in a better place. I don't know what would've happened if we had refused to allow the delay in body pick-up.
In each case, we within days received a professional letter of condolence and letter of thanks for our loved-ones' generosity in agreeing to participate in the Willed Body program.
In the county where one of our family died, their program has an annual or bi-annual event where the bereaved can all come to honor their dead. In another county they sent us a packet of flower seeds to sow and as flowers come up, remember the beauty of our loved one's life well-lived, and beauty even in death.
In our case, the bodies are eventually cremated, and there is NOT the possiblility of getting the cremains. That is okay with us, we know our loved ones are healthy, vibrant, happy and beautiful in Heaven. We want to remember that, and not their ill final days.
I hope this helps, and will be thinking good thoughts for you & your mom for her final days.
I had a medical procedure years ago that involved the transplant of tissue to repair a defect that I never knew I had before I became sick. I asked where they got it, and the doctor said that no one had ever asked him before. He said, "It's from a cadaver." Some might freak out at this info, but I felt only deep gratitude to the person who donated her/his body for that purpose.
I have registered to be a donor.
https://brainsupportnetwork.org
They can arrange brain and/or body donation.
Extremely helpful and caring, and they coordinate everything.
Nice for something positive to come out of this terrible disease, contributing to research towards a cure.
Also, a definitive diagnosis with an included pathology report will bring some sort of closure and information for children.
A thoughtful and caring decision by your family IMHO.
At the end of his life he was adamant about donating his body in the hope of research finding something valuable from his body.
I deeply admire those who donate their bodies to a teaching hospital like my uncle did.
The Brain Support Network is very easy to work with and very appreciative of us being willing to donate his brain.
https://medicine.musc.edu/departments/pathology/division-of-experimental-pathology/ccnl/how-to-become-a-donor
This is in South Carolina but the FAQs give a lot of insight that are probably similar to other programs. I don't know if they accept donations from out of state or not. The way she described the process, it was handled with the utmost respect and dignity. Since you say "maybe" Lewy body you may want to be sure a brain bank is involved and this may give you some answers. One thing to be aware is it states that there is a difference between being an organ donor and a research donor so be sure you are connecting with a program that will do what your family prefers.
Somehow I am not comfortable with whole body donation yet, but since my husband has agreed to be an organ donor I am seriously considering arranging for his brain to be donated along with any organs and tissues that can be used. They may be handled by different organizations. Another friend tried to donate her husband's brain but was not able to do so because she had not arranged it prior to his death. Different programs have different policies so definitely begin identifying facilities you may want to consider and contact them now to know your choices. If possible I definitely would be more comfortable making the decisions and arrangements ahead of time rather than when I am dealing with a death.... and of course those decisions can also be rescinded at any time before.
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