Something Difficult to Think About

[KarenC]

Since my mom may be nearing the end, in addition to feeling very sad, I've got all sorts of "practical" stuff going around in my head. One rather unpleasant one is about an autopsy. Her off-the-doctor's-cuff diagnosis was "mixed dementia." She's had an MRI of her head a while back which I think showed things like shrinkage and maybe evidence of strokes. In practice, the medical treatments of today are so inadequate (no miracle drugs) that it doesn't really matter -- you try things and see what works.

But ... my mother's mother and *her* mother all had dementia, ditto grandmother's sister ... so I think there is at least some genetic component. Not a happy thought for my own future. Which is why I've kind of planned on having an autopsy done, in the hopes when I get to that point maybe knowing what kind of dementia it was might be useful in getting treatment myself.

Anyone else made or seriously considered this decision? We don't have any religious beliefs, no taboo on "desecrating" someone's body, and my parents indicated on their drivers licenses that their bodies could be used for transplants, etc. Still it's unpleasant to me to think about.

Hope this doesn't upset others ... that's why the kind of indirect title of this post.

Karen

 

[Sheila]

Dear Karen, a difficult one indeed. Afraid I don't know anything about how you would go about it, but if your Mum was in favour, then you are obviously doing the right thing to look at the possible implications for future generations I would say. Tough call though. Love She. XX

 

[EllieS]

Dilemma or Torment

Dear Karen

I don't know anything about autopsies but if it was me I'd want to know how likely it is that the report would be able to identify the type of Dementia and whether the report would be given to me in full .

Would it help you to know exactly what type of dementia it is?

Would you worry about having asked for an autopsy? There's no reason why you should and maybe it would help Medical Science.

There's no history of AD in our family but after Dad with PD and Lewybody Disease and now Mum (with AD), on a visit to my GP during a period of lots of stress when I thought (still do quite often) that I have it he asked me what I'd do IF I was tested and found positive. I confess that I just dropped the subject but I do know that I'm not that convinced that, try as they might, anybody truly understands Dementia and I really wouldn't like to be put on drugs until I absolutely had no choice.

If I'm totally honest with you I would not have wanted Dad to be messed with any more - wanting him to "rest in peace" - IF there is such a thing - he'd been through enough. But what am I saying, at the time of his funeral Mum decided she wanted his ashes kept so that hers could be mixed with his and "sprinkled" somewhere together. So, rather than "resting in peace", his ashes are in my wardrobe at home because Mum's now in a home.

It doesn't worry me because my Dad is my Dad - but what does worry me is: Is this stopping him from "resting in peace" or "moving on"!

I am truly sorry if instead of trying to help you in some way, that I've moved the focus to myself but this whole thing is a nightmare that I'm really not sure I can get through!

Take Care - if the decision is yours to make, whatever you decide is right , IS RIGHT.

Ellie

 

[KarenC]

Ellie, you raise some good questions. My husband plans to talk to *our* family doctor about whether an autopsy would provide any potentially useful information.

I'm sorry to hear you don't feel like your dad's life and death have been brought to a good conclusion. I don't think I'd be comfortable with keeping a parent's ashes in my house for a potentially long period before they are buried or scattered. I wonder if you might consider having your dad's ashes stored in an urn in a mausoleum or something like that, until your mum's death when their ashes could be scattered or buried together?

I (and my parents and husband) do not believe in personal immortality, so I do not think the funeral/burial/whatever are of any importance to the deceased, or that lack of a "final" resting place keeps anyone's spirit from resting in peace or moving on. But there is a big symbolic importance for the survivors. I will want the sense of closure from having my mom's body cremated and the ashes buried; I hope that will help my memory of her, which will of course live on after her death, start getting back to the happy memories and not get stuck on her illness and death.

Hope I'm not stepping on anyone's toes about religious feelings here; I realize this may not be helpful if you have different beliefs about what happens when we die.

Take care,
Karen

 

[Canadian Joanne]

For the survivors

Karen, what is important to remember is that whatever helps give you peace of mind is alright. What works for you may not work for anyone else.

I would also like to bring up the idea of having to carry out the deceased person's wishes. I think a lot of people do just that even though it's something that may bother them enormously.

I personally have told my husband that he can do whatever he likes that makes him feel better. I think dying wishes can be unintentionally impossible for some. My father-in-law's wish to be cremated was carried out, even though my mother-in-law was against it. Because of it, she was denied the solace of visiting his gravesite in a manner that was meaningful to her and only visited perhaps 5 times in the nearly 9 years between his death and hers.

Sorry to digress but I feel very strongly about these "dying wishes".

 

[Kriss]

I guess we all deal with these things in different ways and cope or try to cope in our own way. The "right thing" is always going to be different for each and everyone. When asked what to do with Dads ashes Mum said she wanted them kept until she goes too and then I could put them together or spread them together whatever I felt was right. So they are sitting on a shelf at the undertakers (apparently with many others) for the time being and although this leaves me feeling slightly uncomfortable it has allowed me time to think what I will do when the time comes.

Initially I wanted to spread them where I would like mine to go (on our rose patch where many of our dogs are buried - see a lot of people will find that odd but the dogs have always been a big part of all of our lives) but then I thought what happens if/when we decide to move - no plans foreseen but who knows what the future may hold. I recently read that ashes can be made into a type of diamond and I now I'm thinking how wonderful it would be to combine both sets of ashes together for eternity and maybe have the stone set into a locket or something similar. Again many people may find this disturbing but it would provide a physical link to take comfort from. Personally I find nothing much sadder than seeing a untended grave but again when there were people to tend it then that place would have no doubt offered some comfort to the bereaved.

Dad never had to have an autopsy performed but my 16 year old nephew who died tragically in a car accident did and I must say that I didn't find that difficult to cope with as my belief was very much that the shell we leave behind is just that - an empty shell. The person or soul or spirit or essence or goodness or whatever your beliefs are had gone, that was now all around and within us or had moved on already.

It seems strange to write these thoughts down as I am anything but a religious person but I do believe in a power that we have no chance of understanding and in my heart I know Dad is still with me so whatever happened to that shell had no bearing on that feeling.

We all must go with our own feelings though we should have respect for the wishes of those we have lost. I find it difficult to accept that the next of kin can overrule the wishes of an individuals choice to donate organs in the event of their death but it is they who have to live with that choice so how can I judge that as wrong?

The only positive that I have ever been able to link to this awful disease is that we are given the time to consider these questions rather than having to deal with them at with no notice in the midst of the anguish of sudden loss.

The only answer I can suggest - if it is an answer - is "each to their own"

Kriss

 

[Brucie]

My personal view is that when you are gone, you are gone. The following is not intended to offend anyone!

For me, immortality, or at least 'life after death' is accomplished either by being so bad, you are vilified in people's memories forever and by your bad deeds being repeated through the generations, or by being good in some, in any, respect and living on in people's good memories, also through the generations.

The best memorial is someone saying "he/she was good" or something like that. It is what I'll remember about Jan, ultimately.

As to the earthly remains, I once liked the classic Welsh wedding - service in a chapel, interment on a wet day, only the men attending. Women stay at the house and talk, make tea and sandwiches, wait for the men to return. Nothing sexist about that, just a particular way of doing things. There was something very moving about that - for me - only realised when I experienced several.

I agree with Joanne about dying wishes.

Since Jan's illness, I incline towards a humanist service, and cremation. That's what I'd suggest, for my own part. However, I'd leave the decision to those remaining behind. I'm not going to give a damn by then, am I?

And if they wanted to mix my ashes in with modelling clay and make a weird sculpture from the mixture, or mulch the green beans, what's the harm?

 

[Norman]

All through my life I recall our family funerals following what Bruce describes as the Welsh way.
Women never went to the burial or cremation as they became in more modern times.They waited at home with the kettle boiling,very often Salmon sandwiches and a drop of something to warm you.
Both our funerals are pre paid.
Although I cannot believe there is an after life,I will follow the traditional christian service,I do however like the idea of a humanist service.
I don't really mind what the family do with my remains,although I did say that I would like to be scattered around Lake Ullswater.
Peg is a different matter,she has a simple faith,still says Jesus is up there,believes there is an after life, and would want a traditional Christian burial.
The only firm request that Peg and I have made is for cremation,the family can decide the rest,what ever they are at peace with.
Norman

 

[connie]

My dear Lionel wants a 'viking' funeral.............My boys have agreed to put his ashes on a small model boat and launch him on the outgoing tide from the beach hut.........We often have a laugh about flaming arrows, I am sure there will be a by-law against that.

Whatever keeps Lionel happy......we will just have to do our best when the time comes. Regards, Connie

 

[thompsonsom]

My mum died 12 years ago at the end of this month, at the time my sister took care of the ashes with the intention that we would sprinkle them in a place my mum used to walk when she was a child but as it was winter at the time we never got round to it, then time goes on and your busy with family and work and trying to get a time when we could all be together seemed impossible, my sister moved house and the ashes went with her and we decided come the summer we would go scatter the ashes but to date we have still not had a time when we can get together to do it so the ashes remain at my sisters and when we suddenly remember they are still there we often have a chuckle knowing my mum would see the funny side of it, maybe with dads failing health we will keep them until such times as dads no longer with us and then we can scatter them together.

jan

 

[mandyp]

Like Brucie, I struggle with the thought of eternal life and have often felt that, if when my time comes anything that's left it's fine for my family to do what they like with it....if anything was going to be useful for transplant, tests whatever.....I don't mind.

My Mum on the other hand, has never wanted to be 'messed with' and I would abide by her wishes, despite them being nothing like my own.

Even though I'm not religious, I still believe that when someone dies, they've gone....the body is just that, a body. It's no longer them, sadly.

On the other hand I wouldn't want to know if Mum's AD was genetic, I understand that even if there is a 'gene' this doesn't guarantee that I would get it anyway.

Mandy

 

[Katy44]

Karen,

Thank you for posting about this very difficult topic, it's certainly made me think about these things.

The way I see it is unless your Mom has or had very strong feelings herself (and the donor card would seem to indicate not) then surely what she would want to happen is what you would be comfortable with. Surely as your mother your happiness and comfort would be important to her?

I'm thinking of you.

Katy xx

 

[Ruthie]

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

 

[Sheila]

big hug ruthie, love she.xx

 

[angela.robinson]

HI RUTHIE you are one brave lady ,i so admire the way you have dealt with ,your husbands ,and now your own illnesses,i have just attended a friends funeral,she allso had it all planned down to the last detail ,it was very comforting for her children ,to carry out her wishes and not have to decide on how things were to be done .I allso would have liked my husbands brain tissue to be donated ,but i did not know how ,i dithered untill it was too late ,on his death i asked the attending doctor about an autopsy ,but she said it may not give any answers ,(i never believed it was AD)and as it was upsetting my children ,i decided to let it go ,STAY STRONG .ANGELA

 

[connie]

Ruthie, stay strong..........love as always, Connie

 

[KarenC]

My husband plans to talk to *our* family doctor about whether an autopsy would provide any potentially useful information.

My husband visited our family doctor yesterday to discuss this. The doctor said he thought it was a good idea. As we know, there are various causes of dementia (Alzheimer's, vascular, Lewey body...), and presumably an autopsy will help identify which one(s) my mom suffers from. Our doctor says that advances are being made fairly rapidly in dementia research, etc. So 5 or 10 years down the road, knowing this kind of family medical history might be useful.

Here in the U.S. this costs around $1000 according to the doctor. Our next steps will be to talk to my mom's GP and to her care home, so see what we need to do to make this the plan for when she dies.

Karen

 

[Sandy]

Hi Karen,

Sounds like you and your husband are getting the facts and making a plan.

Obviously, this is a personal and difficult choice.

The knowledge that you gain could be seen as a kind of insurance policy - one you hope you never need to use, but could be called upon if needed.

Take care,

Sandy

 

[Kathleen]

Hello

I have thought a lot about this post and the only definite decision I have made is that, whatever mum's actual cause of death is, I will insist that AD is put on her death certificate.

If all the sufferers had this done, the powers that be would perhaps realise that it is a disease that affects a huge number of voters!!

Maybe then AD will be taken seriously and more funding and proper care packages would be set up.

Was that a flying pig going past my window?

Kathleen
xx

 

[noodle31]

Hi

You are all so strong.

I used to believe totally in life after death etc but I am doubting my beliefs at the minute, I dont know why.

The subject of autopsy has also been bought up for us, and it is something I hadnt really thought of before, but I do feel quite distressed at the thought of dad being cut open sorry.

I also have another problem, as in the funeral. I have been to one funeral in my entire life, it was a burial and I was 15. I will be 36 tomorrow and have what is akin to a phobia when discussing them

I wake up at night in a cold sweat thinking about attending dads funeral as when it happens. I have anxiety attacks at the thought of it all really.

But I have to go dont i?

oh to be a child again

love Jane x