Terry Pratchett, Alzheimer's and Choosing To Die

[Yeekim]

Alzheimer's is a horrible, horrible disease. Having seen my Grandfather suffer with Lewybodies, a form of Alzheimer's, I can only say that I KNOW he would have been in support of this because ultimately, as soon as he was forced (quite literally, my father had to drag him across the street) to be put in a care home he gave up and I knew he'd had enough. It just became a waiting game for him.
I feel Alzheimer's can truly affect those outside looking in on their loved one suffering as well. The pain I felt seeing my Poppa forget who I was and having to tell him the same story from my childhood in order to get him to look at me, crying, and grab my hand and grumble gobbledegook. Choosing to die gives someone the opportunity, when they're ready, to go and let everyone say goodbye to them in a dignified and honourable manner without the pain and suffering we ALL go through at that time.
I don't know - I've only looked at choosing to die from the perspective of an Alzheimer's patient, but I can't be more in support of it after seeing what happened to my Grandad, what WILL ultimately happen to one of my favourite authors, and so many other people with degenerative diseases like the gentleman in this tv documentary.

That is a heartwrenching story, but...
I sure can imagine your pain when your Grandpa couldn't recognize you. Still, I am not entirely sure whether he himself was suffering while he couldn't remember. I mean... can one suffer because something one is not even aware of? What of people with mental illness (when we get down to it, what is Alzheimer´s but loss of certain cognitive functions)? They often aren't exactly dignified either.

Wanting to put someone down to save yourself from the pain you feel watching him seems a bit selfish, tbh.

Yeah, that´s cold but I really don't know how to say it otherwise. Sorry.

 

[Boundless]

That is a heartwrenching story, but...
I sure can imagine your pain when your Grandpa couldn't recognize you. Still, I am not entirely sure whether he himself was suffering while he couldn't remember. I mean... can one suffer because something one is not even aware of? What of people with mental illness (when we get down to it, what is Alzheimer´s but loss of certain cognitive functions)? They often aren't exactly dignified either.

Wanting to put someone down to save yourself from the pain you feel watching him seems a bit selfish, tbh.

Yeah, that´s cold but I really don't know how to say it otherwise. Sorry.

Oh I think I need to reword how I've put that - what I mean is, my grandad was 'in and out of consciousness' if you like, so sometimes he would know what was going on, and sometimes he wouldn't. He was constantly saying how much he hated seeing my grandma upset when he was conscious of what was around him, and how he wished he could stop that. I would never CHOOSE to put someone down to save myself pain, that's crazy - from my grandad's perspective, it was just frustrating because it was totally out of his control and because it was all part of the mind there's still a part of you which thinks you can stop it happening.

 

[El_Machinae]

Alzheimer's affects 1/3 of people by the time they're 85. We really need to find a cure before our grandparents are that old.

 

[Cutlass]

before our grandparents are that old?

My mother is already that old

 

[holy king]

That is a heartwrenching story, but...
I sure can imagine your pain when your Grandpa couldn't recognize you. Still, I am not entirely sure whether he himself was suffering while he couldn't remember. I mean... can one suffer because something one is not even aware of?

yes, yes one can. with most other forms of dementia there are quite a few people who do seem to be able to relish in their oblivion, at least some of the time.

with alzheimer patients, this is a very rare occurence.

edit: i mean as soon as there no phases of relative sobriety left at all.

 

[bathsheba666]

My mother has this.

She knows something is wrong, but can't work out what it is.

Occasionally she is lucid enough to express that she has had enough...

 

[Valka D'Ur]

Why weren't you able to take care of him at home? Is it because he lost his home and he can't live in your home or was their some adult services that stepped in and prevented you from doing it? Just curious, if it's too personal never mind.

We lived in the same house. The government still took it.

 

[timtofly]

We lived in the same house. The government still took it.

That would be government sponsered health care at it's worse, I hope.

I know that personnally, it is hard when one's mind is active, but one does not have control over one's ability to use motor function skills. The person watching helpless at the "mental" issues of the one going through the illness tries everything in their power to help. It does not matter if they are scared and mean, or loving and pitiful, the person suffering can only look on in pain knowing that what is happening does effect the one watching it happen and there is nothing either party can do to help the other.

 

[Thomas Ash]

The documentary was pretty hard to watch - I respect the rights of those it depicted, but I'm not sure I'd have made the same choices, and I felt terrible for Peter's wife. On which note, I've had a long piece on the philosophical arguments for and against euthanasia published on openDemocracy today (I'm a longtime lurker here, so figure I'm justified in that bit of self promotion ). I'd be really interested to hear any responses to the arguments in the comment thread there (there's already one slightly nasty comment, which doesn't exactly engage with them).

 

[GinandTonic]

Hell of a show. Prattchett is a class act but peter (the old boy?) made me proud to be British. Hope I check out with a fraction of the dignity he showed.

My mother has this.

She knows something is wrong, but can't work out what it is.

Occasionally she is lucid enough to express that she has had enough...

Sorry to hear that. It's a stinking pile of poop of a situation, but in my limited experience that was the most heartbreaking stage. Anything we can do and all that.

 

[El_Machinae]

My mother is already that old

Well, it seems that the personal stake is even greater for you. I have to worry about my loved ones, and think we should grind this goddamn disease into paste before my loved ones are likely to be victims of it.

 

[Samez]

edit: did take me too long to respond but ntl...

At some point Alzheimers will be so bad the person suffering needs 24/7 attention. You will have to sacrifice your whole personal life (at least as long as the suffering continues, which can be several years). Also most people don't have the experience /professionalism to take care of someone like that.
Not nursing someone at home doesn't mean you can't support and take care off him/her. In the best case your relatives will be taken good care and you will still have enough strength to go on after the person finally died. In the worst case the will mistreat you relative and rip off the money.

 

[Eran of Arcadia]

My grandfather had Alzheimer's, but the fact that he then had a stroke the complications of which took a few months to kill him, is basically a blessing.

 

[EnglishCrusader]

My Gran also has Alzheimers, which will be passed onto my Mum and my sister as they grow older, and maybe even my daughters and nieces (if I have any), so I know first hand how horrible this disease is.

 

[bathsheba666]

My Gran also has Alzheimers, which will be passed onto my Mum and my sister as they grow older, and maybe even my daughters and nieces (if I have any), so I know first hand how horrible this disease is.

I didn't know that a certain genetic link was established?

 

[EnglishCrusader]

I didn't know that a certain genetic link was established?

Well, allegedly, my Gran's mum and her mum also had it.

 

[El_Machinae]

There are specific genes that are shown to increase the likelihood. They cause susceptibility, and have putative mechanisms by which they can cause the disease, but they're no guarantee of getting the disease.

Bertram et al. (2010) reviewed the literature for the journal Neuron and believe that 60-80% of late-onset AD is genetically determined. That said, there're a LOT of different genes involved, and you only inherit half of your genes from your mum (and she only passes on half of her genes to you). For example, one of the most powerful genes in causing AD is called "APOE". It's on chromosome 19, though, so if your mum only has one of the 'bad' versions of APOE, you only have a 50% chance of getting the bad gene.