Friday, 19 September 2008

the right to die

I noticed this story on the BBC News website today: once again someone has suggested that those with Dementia should be allowed to end their lives if they feel they are ‘a burden’ to others.

This brings back memories.

When my Father died nine years ago, I went home to help Mum with the funeral and ended up staying for a month. I had to go through all their papers as part of my role as Executor. Hidden away in one part of the study I found a stack of magazines from the Euthanasia Society. It turned out that these were Mum’s. She tried to tell me her feelings on the matter, which I suspected were somewhat parroted. Having just lost Dad, my sympathy with these ideas was not great. I rather angrily threw the magazines away with the junk.

Over the intervening years, Mum’s concern shifted from wanting to end her life at a time of her choosing to being terrified that she might be cremated alive. “When I die I want you to make sure that I’m dead,” she would anxiously tell me and I would picture myself hesitating over her prone body with a hammer. She even asked her Solicitor if she could put a stipulation about it in her Will, but we pointed out to her that by the time the Will was read it would most likely be too late. We talked about a 'Do Not Resuscitate' order, something I'd seen countless times whilst watching 'ER', but nothing was ever drawn up.

Now that Mum has Dementia, if anything I feel more resolute on this issue.

You see, I know that Mum can be so very easily influenced to believe strongly about just about anything. She is incredibly dependent, not just physically but mentally; so much so that I need to be extremely cautious what I say around her. Her ‘Self’ is so wispy and undefined these days that any strong statement from me could distort her into someone unrecognizable. I’m not going to be using words like ‘burden’ around Mum, ever.

And just because Mum is losing her wits, it doesn’t mean that she isn’t capable of enjoying the attention and stimulation she’s getting at the Home. She’s happier now than she’s been for a few years.

If Mum was sound of mind and suffering from something incurable that was only going to get worse and more painful then sure I would countenance her right to make an informed decision about the manner of her passing. But she lacks the ability to make such a choice now.

My reaction to this news story is based entirely on my experience of one individual with Dementia and I'm not claiming any authority on the subject. I haven't even read the originating article that prompted the news report. I just worry about less sympathetic carers influencing their relatives or clients for nefarious purposes. It's a gut reaction and I may revisit this subject another time.


Sorata said...

You brought a very valid point. As much as we like to think all family are supportive with elder family members, it's not really the case.

It would be horrible if one member decided to "put thoughts" inside the elder's head to make them agree to end their life.

Such horrible thing to think about... yet we know it could happen...

Greg said...

Yes, it's serious face time here at Wits' End Towers. Just when I thought I had no news to write up along came something huge I'd forgotten about. Go figure!

cb said...

I have mixed feelings about the right to die in general. I like the idea of choice but am terrified of the potential scope of it and like you, I share particular concerns about older people with dementia being put into positions that make it easier for family members. I think often older people feel like a 'burden' (many people have told me that) and I would hate to think that the possibility of choosing death was being seen as convenient.

Greg said...

Hello CB. Yes, I think I should have explored the word "right" a little more in this post. Looking back at my entry, I seem to be saying that Mum has lost this right in my eyes, that I would not accept her wishes on this issue now that she has Dementia. I've stripped away so much of Mum's old life in the last year (with good intentions) that it's a surprise to find myself walking away with one more thing.

I personally would prefer to live for millennia but would still be indignant if someone told me I hadn't got the right to choose to die if there was no hope of me enjoying my life any more. And yet I'm adamantly ruling out this choice for my Mother.

I think it's about trust, about not being able to be sure who is really talking when Mum opens her mouth. She is no longer a consistent person. It's like she's singing Karaoke these days - each song might seem convincing but it's not her own.

Okay, my metaphors are getting stranger as my belly rumbles! Time for Lunch, I think.

Thank you for your comment.

LSL said...

Hey Greg - so well said, as usual. Thanks for writing about this, and for talking about the disappearance of self. It's heartbreaking, and yet it helps to understand another part of dementia. I agree with what you're saying here.

You mum's concern about being cremated alive is the first time I've heard of that. Was that part of an early state of dementia, or perhaps a fear that isn't uncommon, but I have yet to encounter? I'm not sure.

Always glad to hear from you, Greggers. :)

Greg said...

"Greggers" made me laugh on this miserable grey Monday morning - I haven't heard that for about 30 years. Thank you for the smiles.

Waking up "dead" is a fear that I've read about before. In past times I understand there was a craze for installing little bells that could be rung from the grave, just in case, and I imagine that the customs of sitting with a body overnight and even the Wake were originally based on the sensible idea that the doctor might not be worth his fee. Even in the past year I'm sure I've heard of one story of someone coming to in the Morgue. I expect Mum was responding to a story like that. I don't think it's an aspect of dementia. Nowadays she is far more focussed on her meals, her chocolate, the bathroom and her sore knee. Such metaphysical concerns are currently unlikely when even the location of the nearest toilet is a matter of philosophical speculation for Mum.

Always glad to hear from you, too, LSL, and your pictures from Hawaii look like Heaven.

citygirl said...

Ahhh...this is tough topic but one caregivers must face. When my dad passed away 16 years ago, my mother would go on about how she wanted to die or wished she had died instead of my father. She would bawl her eyes out at the dining room table as I sat helplessly. I would let her know that I was happy she was still here and that I still needed her (I was only 17 years old at the time).

As the Alzheimers progressed, mom would sometimes bring up how she wanted to die when she was having one of those days where she was somewhat with it. On those days, I think she realized that something was wrong with her and wanted to end her own suffering and confusion. Those were really hard days. But it wasn't a person in their right mind talking. I don't ever think that an Alzheimers patient could make this decision.

On a somewhat related note...the DNR. UGH... it makes me feel like I'm going to bawl just thinking about it. Our nursing homes here require us to sign a form regarding this - you choose the level of life-saving activities that will be done if something happens.

At first, we had a high level of life-saving activities. As mom got worse over the past couple of years, (i.e. bedridden, unable to communicate, eat or stay awake for more than a few minutes) we lowered the level of activities that would take place. We consulted with doctors and my sibling is an emergency worker so he has seen a lot of people revived just to live on for years completely brain dead in a coma. So for the last couple of years, we had DNR as our request. It absolutely killed us to sign the forms but we knew it was for the was in a terrible state these last couple of years. But in a small way, I felt like we were murderers, not trying 100% till the very end. After years of caring for sick parents and many ambulance trips, I always thought in my head "the next ambulance won't have flashing lights &'ll be a quiet drive away".

Greg said...

That is another powerfully evocative story, Citygirl, and I'm glad to see you've posted it as an entry on your own blog. I really felt for you as that 17-year-old and also later as you came to sign the DNR papers. You write so well that I almost feel like I've been there. Thank you so much for sharing. I feel so much better informed.

The first time my Mum asked about DNR (shortly after Dad died), I thought it was something I couldn't agree to do, even though she was requesting it of me. Like you say, it felt wrong not to try 100% and I didn't know if I could live with myself doing anything less. Now, after experiencing her decline I'd say that I'd weigh the pros and cons depending on her potential to still enjoy her life without suffering pain. It's interesting to hear about the policy of graduated life-saving activities over there in Canada. I'll have to look into whether we have anything similar here.

Thanks again.

pablo said...

DNR - to this day I sometimes wonder if my wife & I did 100% for my mother-in-law. But the doubt is only for a second AND then I know we did the right thing.

Relatives questioned our decision, but my wife & her father were dying (both inside & physically deteriating) as well & it was not their time.

My M-I-L had been dying for 8 years and the body & soul does need to rest. The day she past away, the doctors said "we can revive her, you sure you want to execute the DNR?" But revive her for what? Who she was died many years ago & who she became was a shell - a vehicle without a driver. There comes a time when we all must let go. This may sound cold & heartless.

The DNR actually took the uncertainty away. We all argued if we were doing the right thing and if we said 'keep her alive' I'm sure the doctors may have been able to do it. But for what - a few more days of agony? She was comotose and her body in pain.

No the time comes when we all need to exit stage right - with dignity and the DNR allowed us to deal with letting her go rather then having to deal with the guilt of the final decision.

Keep loving your mom everyday so there are no regrets in the end.