Donating body to science. How to tell family.

Needhelpsaving

I think it's very generous of you to even do it . . whether they are able to use it or not.

I think it would be best if you tell your family about it and discuss the possiblity that it my not be able to happen (if they are unable to accept your donation).

If you don't feel your dad could deal with it, then discuss it with the executor of your will and make sure that they are able to communicate your decision should it come to it. I would certainly discuss it with your spouse/children (if applicable).

I know it's kin of morbid, but I would rather know what my parents wanted and be able to give them the send off they wanted than to sit there clueless.

Careful_with_that_Axe

fluffnutter wrote: »

I'm not surprised your father finds this difficult. He's lost his wife to this disease and knows he may lose a child too.

Can you believe, I had never thought of it like that! That has actually quite shocked me. I used to get frustrated when he couldn't accept my limitations but I can understand now. Denial ain't just a river in Egypt. Thank you sooo much for your comment; you've helped me a great deal in the way I will talk to him in the future. :T:o

They were divorced before her death but I suspect he carries some residual guilt that he left her when she was ill, even thought it was some years before she died.

I'll talk to him and his wife together as she is very pragmatic and will help him deal with his feelings about the situation and just be very matter of fact about it when I see Sister after Xmas. Actually, she is also on here and I half hope she sees this thread and opens up the conversation herself.

Gazing_On_Sunsets

I've donated my brain and spinal cord to MS research - I don't have MS, and they need non-MS brains to test things on, apparently. I got sent a pack and my next of kin had to sign to confirm they were ok with it. This is because when I die, my brain and bits have to go to London withint 48 hours, and if the next of kin don't know, or object, it delays it, and my brain will be no use.

When I told my folks they were shocked, actually. They are up for organ donation but brains seem different. However we talked about it, and they said that although they were uncomfortable with it, they would sign.

So your folks do have to be on side. Good luck!

Careful_with_that_Axe

Gazing_On_Sunsets wrote: »

I've donated my brain and spinal cord to MS research - I don't have MS, and they need non-MS brains to test things on, apparently. I got sent a pack and my next of kin had to sign to confirm they were ok with it. This is because when I die, my brain and bits have to go to London withint 48 hours, and if the next of kin don't know, or object, it delays it, and my brain will be no use.

When I told my folks they were shocked, actually. They are up for organ donation but brains seem different. However we talked about it, and they said that although they were uncomfortable with it, they would sign.

So your folks do have to be on side. Good luck!

That is helpful. Thank you very much.

IHD

I dont really know what to say as i have a terminal illness myself, so i cant donate after i die. I think what you will be doing is wonderful. Maybe you could get the point across to your family that if what you do just saves one life or forwards the research, then you will be content.

MrsManda

My husband and I filled out the paperwork to donate our bodies to science around the same time we did our wills. It took me a while to find a university research group who may be willing to use it as I've had a lot of surgery for different things.

We told our families at the same time as we told them about our wills as death was being discussed anyway which I think made it easier.

It wasn't much of a surprise to most of our families because they know we're both passionate about research and illness. We walked them through the process so if possible we'd like to donate organs to the living, if not possible then we'd filled out paperwork to donate our bodies to science because it's important to us to try and help others. Though it was also important to explain that there's a possibility that our bodies wouldn't be accepted in which case they can do what they want.
I'm not sure 'happy' is a good way of describing how they felt but they understood that it was important to us.

Butterfliesarepretty

Careful_with_that_Axe wrote: »

I have a very rare medical problem that may have some genetic traits and I am passionate about leaving my body to the Medical community in the hopes that some more research can be done to identify treatments or whatever.

I have a Living Will in place regarding my wishes when I can no longer communicate. I am unable to donate organs etc in anyway because of the disease and the various treatments I have been on.
I don't want them to just see this direction on there with no prior warning.

If a PM is necessary, I know they won't be able to use me as Med students need an intact body.
My Mum died of a different strain of the disease I have and my sister was absolutely resolute that she didn't want Mum touched in any way after her death.

How do I bring up this subject with her and the other family member, my Father, who suffers from depression and seems to find it difficult to deal with the fact that I am ill?

I think its brilliant idea. My father died from bladder cancer last december after four years of suffering. He donated his body to manchester university science, they took him two days after he died, eventually we will receive the ashes and there will be a ceremony. My mum has also opted for this and I will be doing also.

My dad did not want my mum to have to cope with organising the funeral etc and other worries. So when we got the call that they were taking him it was a massive relief.:D

On 20th march 2012 the family have been invited to service in mcr at the uni to say thankyou to all the people who donated their bodies last year and my dads name will be mentioned.

nixe

He donated his body to manchester university science, [ butterflies ]

i am sorry for your loss it must seem very raw still. how would someone go about this with the man univers ?
op i think you are doing a good thing.

Doozergirl

Gazing_On_Sunsets wrote: »

I've donated my brain and spinal cord to MS research - I don't have MS, and they need non-MS brains to test things on, apparently. I got sent a pack and my next of kin had to sign to confirm they were ok with it. This is because when I die, my brain and bits have to go to London withint 48 hours, and if the next of kin don't know, or object, it delays it, and my brain will be no use.

When I told my folks they were shocked, actually. They are up for organ donation but brains seem different. However we talked about it, and they said that although they were uncomfortable with it, they would sign.

So your folks do have to be on side. Good luck!

You'll be in good company, I donated my mum's to the same people at Imperial College (the disease killed her very young) and I will do the same. I went there and looked through a microscope and saw first hand what the disease does to the myelin. I was blown away by it.

OP I was going to ask if there was a specific charity related to your disease that organises research in the same way as the register does for MS. They act as a distribution point for research going all over the world so tissue from one person goes to many different places to help different areas of research.

Doozergirl

(continued from above) It would be great if you could get a specific agreement with people who can genuinely use your body for the good of future sufferers rather than a vague agreement from your consultant. The people at Imperial College were incredibly reassuring to me and grateful for the donation. I know I could contact them now for information on where and what and there will be a full pathology report somewhere but I've chosen not to open that book yet. Perhaps if you had a firm agreement, your sister/dad will have a firmer link with your legacy, iyswim.