Dear Karen
Thank you for posting on this topic. Also thanks to all the people who have replied, it has been very interesting to hear people's thoughts on this.
I have had to think a great deal about all these issues lately. When my husband was first referred some years ago to the National Hospital for Neurology to try to get a diagnosis, I had a session with a Nurse Counsellor, who apart from giving some very good advice, especially regarding setting up Enduring Power of Attorney, asked how my husband and I would feel about donating his brain for research purposes. Neither of us believe that anything is left in the body of the person/soul/whatever after bodily death and if anything continues it is not related to the body that is left behind. We were both signed up for organ donation, but I had to discuss it with my husband - can you think of anything more difficult? Retrieval of the Brain has to be done very quickly after death, so the hospital has all the paperwork and the contact numbers for the retrieval team.
In fact I opened the subject on the underground train coming away from the hospital while events were still fresh in his mind, and I said that they would find it helpful in finding the causes and a possible cure for Alzheimers at some point in the future. He immediately agreed and didn't seem at all troubled by the idea. When we got home he read and signed the paperwork for it (he was still able to understand it). I still find it a difficult prospect, but truly believe that it is the right thing if it helps others in future.
I was also interested in the discussion of funerals, disposal of remains/ashes etc, as not only is my husband in the late stage of Alzheimers, but I have terminal cancer, so it's a bit of a race to the finish! I am nearing the end of a second course of chemotherapy, and my oncologist is pleased with me, so hope to have a few more months in remission. I have talked to two local undertakers, decided on one of them, and discussed what I want at my funeral (personally I would be happy to be put on the compost heap, but know that the funeral is for the benefit of those left behind).
My sons are open to whatever I decide (I have discussed it with them) for both me and my husband. I have decided to have Christian services (Methodist for me - well, for my old mum who is a devout Methodist) and C of E for my husband who attended that church in the last few years. I am also very interested in Buddhist teaching, but I know that my Buddhist friends will be doing their bit towards my reincarnation if that is what happens. I have put in a bid to come back as Director of the Uffizi Gallery in Florence if the Buddhists are right!
I have talked to the local Methodist minister and have nearly finished planning a simple funeral with music, hymns, a poem etc that I want, and am doing the same for my husband, with his favourite hymns. I am making it clear that if my sons want to add or subtract anything they can do so, but feel that they will have enough on their plates looking out for the other one whichever of us goes first, and at least they can feel that they have done what I wanted and what their Dad would want.
I am also about to pre-pay for both funerals - good tip if you are facing care home fees and your capital is just over the limit, as they can't count that as capital!
Have decided on cremation, although I also like the idea of the bio-degradable coffin and woodland burial for myself. But I am a bit of a romantic, so have instructed the Funeral Director to keep the ashes of whichever goes first, unless either of the boys or my husband's brother wants to mind them, and then when the other one goes the ashes are to be mixed together and buried under an Oak tree I have found which is on a hill and looks out over the Dorset countryside, the little town I live in and love and has a view through the hills to the sea. My husband had a bit of a thing about Oak trees, so think he would like that idea. My brother-in-law is willing to deal with the practicalities, along with my sons and any close friends or family who want to be there.
My brother-in-law's partner has a good idea - she wants her ashes to be put in a rocket and fired off Golden Cap out to sea. (Golden Cap is a sea-cliff in Dorset and is the highest point on the South Coast of England). She knows someone in the firework industry so may get her wish!
I am also giving my brother-in-law some cash to make sure I have a good Wake. One of my best friends said would I mind if she got horribly drunk at the wake, and I have given her permission to get as drunk as she likes in my honour!
It's often said, I know, but whatever else is in store, be it oblivion, eternal life and joy, or reincarnation, we live on in the memory of those who have loved us, and in any good things we have done that have made a difference to others.
Meanwhile, I live for the day, or even the moment, and get joy out of the good things that happen and especially from the love and support of family and friends. I have learnt so much in the year since I was diagnosed, have done a number of things I wanted to do, and feel it a privilege that I have been able to tie up the loose ends, including making plans for funerals etc.
Making these decisions about these matters for loved ones is so hard to do, but the decision you arrive at will be the right one, because it will be based on everything you know about what they are likely to have wanted. Also you will no doubt think about the good it could do in adding to the store of knowledge about this dreadful disease, as well as possibly answering some of your own questions.
Can you get in touch with some research centres and talk to them, as they can also use the information they get to increase knowledge about the disease. If you go down this route you must make sure that that particular research team will provide a full report to you, as not all of them do in the UK. It may not be necessary to have a whole body autopsy, and after removal of the brain the appearance of the body is restored to normal, which may be a less distressing thought for you. (I was a radiographer and have seen autopsies carried out, including removal of the brain).
My thoughts are with you at this very difficult time.
love
Ruthie