Prolonging life, or holding death off?

[zeeeb]

What are your thoughts on this?

I ponder this alot, because my dad has a bit of a phobia about death, always has had the phobia. It's quite wierd for someone of his age. He won't discuss it, and changes the conversation or walks away whenever it becomes a topic. So I wonder what will happen when my mum reaches a certain point, where her quality of life is non-existant. Will he fear death so much that he will do any ridiculous thing to keep her alive rather than have to face her immortality?

I am of the belief (and this is what I would want for myself) that once you lose a certain quality of life and no longer appear to get much joy out of what's left of your life, that it's pointless doing surgeries, putting in pace makers, giving medications, resuscitating, things that are going to prolong life. Obviously this is all dependant on what the person in question thinks, and their religeous / moral beliefs are.

I wonder if i'll have to lay it on the line for my mum and try and fight for her right to die. I know she thinks like me, she's a nurse, she's worked in aged care for decades, she knows that she doesn't want the end to be dragged out over a period of years / decades. She's always said, "if i ever get like that, shoot me, decades before alzheimers was even in the picutre" for her.

I'd hate to have to fight with my dad over these decisions, and really I have no power, he is next of kin, he is her husband, but I feel obligated to allow her wishes to be taken into account.

It's such a scary thought that this issue could divide our whole family in the years to come. I broach the subject gently now, to test the waters, but when you are in the thick of it, is when the big cracks appear.

I have pleaded with my partner that if i ever get alzheimers, that he is never to do anything that will prolong my life, only pain relief or drugs to make me happy and comfortable for the now. I will never make him promise to keep me out of a nursing home, but i will make him promise that he won't hang on to me too tightly when the end is nigh. I will make him promise me to let me go when my time is up and to never force me to stick around for his own emotional needs.

 

[meme]

you know your mums wishes and your Dad must know too?..so you could just say to him.."no need for discussion on this.. when and if the time comes for a decision we already know what she wants"

 

[BeckyJan]

Hello Zeeeb,

"if i ever get like that, shoot me, decades before alzheimers was even in the picture"

These are words my husband used in his early days pre dementia.

I do not think you should 'fight' over this especially as at the end it will be the medics who take action (or not as the case may be). So please don't allow an unnecessary family rift which I am sure your Mother would hate.

During the last stages I requested that my husband be kept comfortable and painfree and not hospitalised; the doctors agreed with me. It could be that your Father will take the same line when the time comes.

Best wishes

 

[rajahh]

I think you should just wait and see. You are worrying about something which might never actually come up.

This is easy to say but not easy to do.

You have your inner knowledge of your Mum's wishes, and you agree with them, so just keep them there in your mind and heart and if and when the time comes, just express it gently to your father, but yes i the end, it may well be his decision.

I am determined not to allow my husband to have any surgery etc to prolong his life, and have already refused some treatment . I have explained to his daughter ( my step daughter) and she fully agrees with me.

I must say though that I did not ask her her opinion, I just made my own mind up

Jeannette

 

[rosiee]

Final stages

I agree with previous thread. I did if for my dad now I had to do it for Mum. Requested she be kept comfortable, painfree and no hospitals and again the doctors agreed. I know its a very personal decision, but I know its what they both would of/do want although they'd also want someone else to make that difficult decision, they always avoided difficult things.

I hope its a long time before you reach that point.

best wishes

 

[Nanak]

What are your thoughts on this?

I ponder this alot, because my dad has a bit of a phobia about death, always has had the phobia. It's quite wierd for someone of his age. He won't discuss it, and changes the conversation or walks away whenever it becomes a topic. So I wonder what will happen when my mum reaches a certain point, where her quality of life is non-existant. Will he fear death so much that he will do any ridiculous thing to keep her alive rather than have to face her immortality?

I am of the belief (and this is what I would want for myself) that once you lose a certain quality of life and no longer appear to get much joy out of what's left of your life, that it's pointless doing surgeries, putting in pace makers, giving medications, resuscitating, things that are going to prolong life. Obviously this is all dependant on what the person in question thinks, and their religeous / moral beliefs are.

I wonder if i'll have to lay it on the line for my mum and try and fight for her right to die. I know she thinks like me, she's a nurse, she's worked in aged care for decades, she knows that she doesn't want the end to be dragged out over a period of years / decades. She's always said, "if i ever get like that, shoot me, decades before alzheimers was even in the picutre" for her.

I'd hate to have to fight with my dad over these decisions, and really I have no power, he is next of kin, he is her husband, but I feel obligated to allow her wishes to be taken into account.

It's such a scary thought that this issue could divide our whole family in the years to come. I broach the subject gently now, to test the waters, but when you are in the thick of it, is when the big cracks appear.

I have pleaded with my partner that if i ever get alzheimers, that he is never to do anything that will prolong my life, only pain relief or drugs to make me happy and comfortable for the now. I will never make him promise to keep me out of a nursing home, but i will make him promise that he won't hang on to me too tightly when the end is nigh. I will make him promise me to let me go when my time is up and to never force me to stick around for his own emotional needs.

I understand your thoughts. We are in that situation now.
Mum is at very last stages of Alzheimers. My Stepfather is forcing her to eat and continuing to get her up, and take her out in a wheelchair and transfer her by himself in a walking movement (even though she can't weightbear) so she gets some 'aerobic exercise' (his words).
The Doctor has told us that she should just be in bed, not taken out (in the rain sometimes - but its ok cos she wears a sou wester!!!!!!). But my Stepfather won't have it. Mum would be mortified if she could see herself and mortified that she is on parade for everyone to see. . She looks a mess, dribbling, hair sticking to her head, dirty clothes, eyes permanently closed. It breaks my heart
It upsets us greatly but he won't listen and points out regularly that he has POA.
At least if your Dad is approachable at any time you have the chance to discuss this and hopefully your wishes can be listened to.
Nanak
missing what has gone and scared of what is to come

 

[kingmidas1962]

this is SUCH a tough one - mainly because the sufferer cannot actually TELL you how they feel, and no one has ever come back from it to say what it was like ... I think deep down your dad will know, and it may be (as has already been said very eloquently below) that the decision has already been made....nature has a way sometimes of deciding these things for us

you know your mums wishes and your Dad must know too?..so you could just say to him.."no need for discussion on this.. when and if the time comes for a decision we already know what she wants"

My in-laws are the same about the subject - its as if they think talking about it will make it happen, and it makes it real, which is too much for some to face. It makes it difficult but its totally understandable.

 

[KatieB]

Hi Zeeeb, your post comes at a very emotional time for me. My mother is at the end stage, she's bed bound, very sleepy and very rarely communicates. She has no quality of life. She wants to die at home. I have spoken to her GP and she is aware of her wishes and I said that I didn't want her pumped with drugs that simply prolong her suffering and keep her in this state. Last night I prayed to God to take her now, I even told friends that I want her to die. Today I feel guilty. I want her to be pain free and comfortable and I want her to slip away because this is a cruel illness and she doesn't deserve it. No one does. If I get like this, shoot me!

 

[Butter]

as far as we are concerned - we should write living wills if we have views that we want known. That is 'easy'.
But it is hard when you are caring for someone who has not made a living will. We were able to draw on family history - how my grandmothers' deaths had been 'managed'. But even so my father did not want to be directly involved in a decision about my mother.
You cannot be sure what will happen - as it was I was the only person talking to any of the nurses, doctors, carers and it became far easier than I had imagined as they agreed they should not force life on my mother. And my mother was determined to die. It took her only a few days.
You cannot know what may happen.

 

[Nebiroth]

This is a difficult one. Certainly my personal view is that there is indeed a point where medical interventions are merely prolonging the process of death, rather than maintaining life - I have never believed in "life at any price". But I know others differ.

If you forsee a real conflict between what your mum would wish and your dad then it might be worth considering her making either a living will, or granting you a Lasting Power of Attorney (Health and Welfare). The latter passes a legally enforced authority to whoever your mum wishes to name.

Otherwise, your dad is going to be the Nearest Relative - whilst he wouldn't have legal authority he would be the ones the doctors would turn to first and his opinion would carry more weight.

 

[zeeeb]

It's reassuring to know I'm not just cold and heartless to think like this. Which I sometimes feel like I'm being when I over think death and end stages when they are still way off. It's crazy, I'm surrounded by it at the moment. I have 3 family members who could go at any moment, and my mum at 58 with her az diagnosis, so possibly decades of her illness to deal with. I often feel like its all I think about, death, illness, end stages... its a whole lot of what I think about at the moment. At the same time as preparing for a long and full life for my young children. I feel like im mentally mashed!

 

[Nanak]

Hi Zeeeb, your post comes at a very emotional time for me. My mother is at the end stage, she's bed bound, very sleepy and very rarely communicates. She has no quality of life. She wants to die at home. I have spoken to her GP and she is aware of her wishes and I said that I didn't want her pumped with drugs that simply prolong her suffering and keep her in this state. Last night I prayed to God to take her now, I even told friends that I want her to die. Today I feel guilty. I want her to be pain free and comfortable and I want her to slip away because this is a cruel illness and she doesn't deserve it. No one does. If I get like this, shoot me!

I feel exactly the same Katie about my Mum. It seems so unfair, and it won't get better
Nanak
missing what has gone and scared of what is to come

 

[rjm]

This is definitely a topic that everyone should discuss with their spouse, parents, children, and close family and possibly friends while they are well. While my wife is now well past the point where she can have any input, both myself and our children know that she does not want any big efforts made to continue her life beyond what nature and common courtesy dictate. On the other hand, when my mum was diagnosed (not dementia but brain tumour) she was very clear that she wanted anything and everything done that would extend her life by even a day. Even though we, her children, disagreed with this we made sure that every effort was made to delay her death as long as possible. Interestingly, near the end, mum wrote us a joint letter saying that while she wanted to continue the fight she recognized that we were the ones doing all the work (we were caring for her at home, as per her wishes) and if we ever felt it was becoming too much for us she would accept whatever we decided. We managed to keep her alive for several months beyond when she would have gone without a lot of intervention. In my opinion it was not worth it and I would never wish it for myself or anyone I care about.

 

[bunnies]

It's reassuring to know I'm not just cold and heartless to think like this. Which I sometimes feel like I'm being when I over think death and end stages when they are still way off. It's crazy, I'm surrounded by it at the moment. I have 3 family members who could go at any moment, and my mum at 58 with her az diagnosis, so possibly decades of her illness to deal with. I often feel like its all I think about, death, illness, end stages... its a whole lot of what I think about at the moment. At the same time as preparing for a long and full life for my young children. I feel like im mentally mashed!

I looked after a dear relative with alzheimers. In the early stages of the disease, and knowing her 'no-nonsense' views on life, I too felt that she wouldn't want to live with the later stages of the disease, if there was a way to avoid it. However, when we got to that stage, we had both been on a journey - a journey which is hard to imagine before you are on it, on which you start to realise that things that seemed so essential to a 'good life' no longer seem that important, and other things seem more valuable. In my experience, dementia altered my priorities, made me value different kinds of experience. I wouldn't want anyone I loved to suffer pain and misery unnecessarily, but until you reach those later stages you won't know if that is what is in store for your mother...although there will be difficult periods, in the end she might, just might, move into a calmer phase, as my aunt did. I would not have wanted her to have been deprived of that end period of her life. You are perhaps trying to keep control of everything that lies ahead, but the truth is that we cannot be in control of this, or know what will happen.

 

[Canadian Joanne]

I think you should just wait and see. You are worrying about something which might never actually come up.

This is true. A lot can happen with time.

I tried to broach the subject of my mother's funeral with my sister some years ago and she said she simply did not want to discuss the subject at all. Last year, I put everything into place, after discussing with her. It took time but she needed that time to be able to approach the subject.

You already know how your mother felt on the subject of keeping someone alive at any cost, so if and when the time comes, you can bring that up.

 

[Witzend]

I feel strongly about this, too. IMO far too many people are living far too long. We have probably all heard of people with a very poor quality of life, maybe doubly incontinent, unable to communicate, not wanting to eat or drink - yet they are wheeled into hospital, put on antibiotics and drips etc. - for what? Just to keep a pitiful existence going a little bit longer, when Nature would have let them go long ago.


My mother is 94 with pretty bad AD, and frail, but she still has the constitution of an ox (or a cockroach, as my sister puts it!) and keeps going on, very rarely ill at all. We have done a living will on her behalf, saying no drugs or medical intervention at all (not just no resuscitation) except for things like fractures. I would not even sanction vitamins. What for? To 'improve her health'? However, we have stipulated all possible relief of pain/distress, etc.

Personally I would consider it positively cruel to give drugs or other med. intervention with the intention of prolonging what is now a pitiful and horribly undignified life. I know 100% that this would be her own wish. Her former self would be so utterly appalled if she could see herself now.

 

[Padraig]

Strange how we think we know what we want as well as the patient who we refer to being in the final stages. Yet when we arrive at that stage things don't turn out quiet as we expect.
Presently I'm writing the story of our Alzheimer's journey and I'm not finding it a very easy task.
Witzend,
like you I refused to give my wife any medication when I took her from a NH. She was doubly incontinent, no verbal communication and did not wish to eat. All the so called experts told me she was dying and one wrote in her notes that I accepted that fact. She was much younger than your Mother: aged 68, none the less she survived almost five more years. During that period I never looked further than what I came to term as the NOW (each moment in our time together).
In the NH she deteriorated rapidly and she confirmed how I thought she felt when I asked if she had given up; she nodded her head. Had I allowed her to remain there she would have died a very painful death, as she was less than six stone and riddled with bedsores. Having arranged to remove her our daughter remarked as we left the 'home' :"Dad they are pleased to be rid of both you and Mum." "Why?" I questioned. Because you spent too much time there every day.
I have posted two photos of my wife on here: before and after; they speak for themselves. How I wish I knew how to post a video of 'a visit to the HN' in spite of their objections.
Presently I writing our story, the reason; because I gained a mountain of information I wish to share, from my experiences in choosing to care for my wife alone in her final years in our own home. I'm past the stage of being interested in making money from the story.
I'd be interested to know what others did with the support equipment like wheelchairs, commodes etc when their journey ended.

 

[Onlyme]

What are your thoughts on this?

So I wonder what will happen when my mum reaches a certain point, where her quality of life is non-existant. Will he fear death so much that he will do any ridiculous thing to keep her alive rather than have to face her immortality?

If your Mum still has capacity and has worries that her husband won't carry out her wishes then I can't see a reason why she can't give you her Health and Welfare POA. Is there anything to say that both financial and H/Welfare have to be held by the same person?

I know of a couple where the wife has recently died. She had very clear instructions that she didn't want to be burried but wanted cremating. She wanted her ashes scattered in a location and also wanted a church service for all her friends over her life.

When she died her husband had her buried in church she never went to in the wrong faith and printed off invitations to her funeral. He sent them to his children but all her work friends were not invited, all his friends were. I had known her for 44 years and wanted to go even though it was hundreds of miles away but I was not invited. It was so sad to see a well loved lady not have the send off she so richly deserved. She would have been heartbroken as it estranged her children from their father.

 

[zeeeb]

I have spoken to her about that. i have asked her if Dad is the right person to make her medical decisions when he struggles to deal with death. And I said, although it would be hard, i'd be prepared to do it, because I know how she feels, and I agree and feel the same for myself.

But if she wanted to go to the lawyers and get it re-written, she'd have to face the wrath of "control freak" dad. He wouldn't like it, and she's given up on fighting him long ago, she goes along with him, because she thinks she has no other choice. That's a whole kettle of other fish to deal with, because she probably should have left him a decade ago, and I think she knows that, but she didn't, she actively decided to stay for "financial security" and feels that she's now made her bed, and has to lie in it.

I agree wizend, I, too agree that many people are living far too long these days. And it seems that many of them are living because of pressure from their families and loved ones to fight at any cost to keep them alive because they can't bear to see them die. Because of legal liability and so on, medical professionals are criticised and held legally accountable for the inevitable death of some of their patients, so they have to do everything they possibly can to extend life, even when they can see that it's no longer viable. Quite sad. As hard as it is, it takes experience to recognise that all life comes to an end, and it is natural. As sad and heartbreaking as it is, it's just the way life goes. Many of us (including myself at 36) don't have a great deal of experience with death, so it's very hard to come to terms with until you gain that life experience.

No so long ago, it wasn't uncommon for people to die in their 60's. Now, it doesn't seem so acceptable that some people age and get ill quicker than others. You see some 60 year olds that are as fit as a 40 year old, and some 60 year olds that are as fit as an 80 year old. That's just the way it is.

 

[SWMBO1950]

I remember having a discussion with an old boss of mine about how I was scared of death. He said it was not the dying but how you die, that counts. This is of course so true.

My father died at 85, in his sleep. He had not seen his doctor of 18 months and a post mortem showed heart failure.

My mother was of cours hysterical as finding him dead but I was and still am grateful the he did not suffer in any way.

That is what I would call a good death - just to drift off and it is a shame more cannot have this type of peaceful exit.