Alzheimer's Question?

Question

My mum was diagnosed with Alzheimer's when she was 66. she was in a home when she was 67 and completely taken by the disease 6 months later.

She is now in a wheel chair, in a nappy, spoon fed and totally immobile. she doesn't know anyone any more, there is no recognition or spark of life in her eyes and she is in a vegetative state. She has strokes and fits almost every couple of months. Before this she was a strong health woman.

Why then, if she was to become physically ill would the Hospital/doctor take heroic actions to preserve her "life"

Why do they have to do all things necessary to keep her breathing when there is absolutely NO quality of life for her?? Why can't she be allowed to go in peace?

Before you give me the 'god knows best' answer. How do you know that 'God' isn't taking her and the doctors keep bringing her back? Also I am sceptical as to whether there is a god, and if there is then would he want her to suffer?

I loved my mum very much, I lost my dad 14 years ago and my family is disappearing, however I do not feel that is it necessary to keep resuscitating what is left of her, it is time to let her go in peace.

Finally, the other argument I hear is that doctors do not know whether Alzheimer's patients conciousness is trapped in the shell of the sufferer, therefore they say everything that can be done should be. If you were trapped in a completely immobile body, with no speech or way of communicating, Would You want to live???

My Gran had Alzheimer's, My Mum had Alzheimer's so this is of great concern to me and my sister.

Answer 1

Someone must have been appointed to oversee your mother's affairs when she became ill. When my dad got diagnosed my mom got Power of Attorney but she and I make all decisions together. For instance my dad recently had a heart attack and we did the bare minimum as far as surgery/treatment went--just to keep him out of pain. SOMEONE in your family must be "in charge" of your mom's care. That person can designate that she not be subjected to heroic measures to save her life.
I suspect from your language you're from the UK where laws are probably different from the US but probably not that different. In the US it's called DNR "do not resuscitate".
I agree with everything you said, including God trying to take her and the doctors bringing her back.
If you and your sister are concerned that you will get AD and subjected to the same treatment, fill out legal documents NOW with your wishes and keep them current.
Saying that you want her suffering to end does NOT mean you don't love your mom. To the contrary, it takes more love to let go than to hang on.
IM or email me if you want to talk about this more.

Answer 2

I have all the sympathy in the world for you,
My mother had Alzheimer's, my sister and I took turns in looking after her for 7 years (at our own homes).
She died 5 years ago,just about the same time as my mother in law came to live with my wife and I, she has since been diagnosed with the disease. Before this happened she made a living will, not to be resuscitated but her body just won't quit.
I know this won't help you but you may feel better knowing that you are not alone wishing the end to a life of someone that you love.
Make a living will now then at least you won't be kept going when your time comes

Answer 3

I find madness to be a gift, but as this poem boldly and correctly states, mixed with anger it creates quite a tempest! I guess when I think madness I see Walter Bishop from Fringe, and always have a positive connotation to it. Mental illness (anxiety, depression, schizophrenia, etc.) actually brings about creativity and other positive aspects to a person. "death is freedom." Wonderful way to end a poem! I love life, and I think most people do, but I came up with this catch-22 that actually makes birth a curse and death a gift. I always seem to find a way to make something good seem bad and something bad seem good. It's a natural talent. This poem has very blunt lines, they seem to come from nowhere! Those are usually the most profound lines, and add very sharp dramatic effects. You also can't tell there are two different artists, that's very cool. Your styles blend quite well :)

Answer 4

Hi - sorry to hear of your situation. My mum has the same problem but not so severe - yet. I was a nurse for many years and I had experience of families sitting down with the care team and discussing the situation. The doctors DO listen to the families and I think that if you bring up that you feel that resuscitation is not in your mothers best interest, they would listen to you. It's a sad situation but doctors are humans too and if you appeal to their consciences, you will get somewhere. Good luck. Hope this helps x

Answer 5

Hi Futbar,

I guess this is one of those ethical/ moral questions that are so hard to talk about...

I am a trained nurse (no longer practising) and I'm afraid I am of the opinion that life should be 'let go' when it is no longer meaningful- (despite medical advances).

I, personally would hate to be 'kept hanging on' just for the sake of 'medical science' or 'propriety'...The thought of 'living inside a shell' is worse than the idea of death and I'm sorry if it sounds ruthless- but I can't help how I feel.

The main reason that we keep people alive is 'because we can'...and in my mind that's no reason at all...

I guess the main question to ask is- what do you think your mother would REALLY want...And then you have your answer.

I'm sure that doesn't help you much- it is such a personal decision- I hope you find peace in your choices....

Take care,
Liz

Answer 6

I am so sorry. My grandmother had Alzheimers at a similar age to your mum at a time when the drugs administered were rather more punishing than the modern ones and it was horrible seeing that active, highly intelligent lady reduced to someone helpless and entirely reliant on her family for every little thing. She eventually died because having been admitted to hospital she was the victim of a careless accident on the part of a young nurse who spilt boiling hot cocoa over her and the shock proved too much for someone so vulnerable. My mother too had incipient Alzheimers at the end of her life, but she died aged 88 simply because her body was worn out and her heart gave out. I know that she was more than ready to go and we have to put ourselves in the position of these dear ones of ours and ask what we would want if our positions were reversed. I can't believe that I would want to continue to have my life prolonged when I was in a near vegetative state. This is a disease without a cure and so anything the doctors do is simply a matter of propping the patient up. Nature is kinder and left to itself, without medical intervention would allow the sufferer to pass on.

I'll pray for you, your mum and your sister.

Answer 7

Speak to her Doctors about a Do Not Resuscitate (DNR) order. There are lots of legal issues, but these can be overcome. After all it is detrimental to your health (and your family) to see her suffering so. I am currently going through documents regarding capacity, consent and ethics in health care for my university course. Unfortunately I'm more geared up for the pre-hospital environment. A DNR CAN be arranged, demand the Doctors to discuss it properly with you. If necessary seek legal advice and assistance. It can be done.
Good luck to you all and lets hope they can find a cure sooner rather than later.
I'll gladly look for more info for you if you want, there is an awful lot out there. Email me if you want to. [e-mail]

Answer 8

Long question short answer. I feel for you, your sister and your mum. There is no logic behind any of it and there is no moral justification for keeping people alive in this state. I did, when I was younger, spend some time working on a psychogeriatic ward in our local bin and it was an appalling place.

we will, however, never find a politician with the will or courage to change this nonsense in the near future. Best wishes

Answer 9

my grandad had altzheimers, and its very scary for the kids, however old to see mum or dad this way. life is sacred, and doctors do the oath thing, to do no harm.

your mum will go, as we all do, of her own accord. my dad had a heart attack, they bought him back so many times, and he wasnt the same person...he had a thick irish accent, yet he was born in dagenham! the closest he got to ireland was a pint of guinness..
maybe it was brain damage, or alzheimers kicking in, i dont know, and sadly 3 months later he died. im lucky, i have no memories of him getting sick, or prolonged illness, and i really felll for you, this is indeed tortuous. mums being looked after, she sgetting the best care, and all her needs are met.

from what you say, its not mum but you who have issues, which is perfectly normal, this must be the ultimate lesson in futility. you may say this now, but believe me, you dont need the guilt trip that follows. i persuaded my dad to have the op that killed him... how'd y think i felt... condemned to a three year nervous breakdown... but that was ten years ago.

i suggest you sit down beside her and say the things you want to say, mums in theres somewhere...just coz you can't see a reaction doesnt mean there isnt one, youre scared, i'll bet she is too.. give her a hug, and tell her you love her,,,

god bless.

Answer 10

Generally doctors are frightened NOT to rescusitate as they can be sued, and this is happening more and more often. It's just a sad fact of modern life that the thought of litigation comes into every decision.
Next time sh's in hospital ask to see the consultant and discuss an NFR status with him.