If you have a relative with severe dementia.....

[Stonehengecalling]

If they are ill, why do you want them treated to prolong their life?

I’m a HCP who deals with dementia daily. In 20 years I’ve only had 2 families that have asked me not to treat their dementia suffering relative, which has resulted in a speedy death. Everybody else wants me to treat their mute, bed bound, incontinent, peg fed relative to keep them alive a bit longer. I don’t understand why.
I’m going to apologise now as I appreciate this post my upset some people, and that truly isn’t my intention. I’d also like to be absolutely clear that I’ve always followed family requests. I just genuinely don’t understand why some families are intent on keeping relatives who recognise no-one and with no apparent quality of life left alive with repeat courses of antibiotics?

There are a lot of emotions at a time like this including guilt over quite natural thoughts. I cared for my mum a lot. Bottom wiping, time, lots of my time, practical care. I also gave her as much emotional support as possible - dementia is such a cruel disease that this mainly consisted of not reacting to her anger or aggression but remaining calm and kind. This meant that I had to reconcile my when will this ever end thoughts with those of not extending her life. I felt at peace with my decisions because I knew I had really done my best and I fell confident it wasn’t in her best interests having witnessed the suffering.

I think some relatives for a variety of reasons; either not watching the suffering regularly or not being able to help etc struggle more and fighting for them to stay alive feels a less guilty option.

It’s a terrible illness for the whole family. I think it is under recognised in terms of palliative care.

@conifergate I really appreciate your response and can tell you’ve experienced this

Elmo. I think the op doesn't really understand what dnar's mean if their doing one round of CPR to keep the famalies happy.
OP please do your research on the mental capacity act-While your at it a bit of empathy training wouldn't go a miss- I really hope your young and newly qualified.

Not any more, OP, but we’ve had two. My mother went on to 97 with severe dementia for her last few years - she showed the first signs in her very early 80s so it was a very long haul.

But I’m at a loss, too, as to why anyone would seek to prolong such a life. I’ve heard of someone who agreed to a pacemaker being fitted to an over 90 with dementia! Even after medics had said that not having it would mean that the person would very likely die quietly in their sleep.
To me it’s verging on cruelty to actively seek to prolong such a life.

I can only think that some people think it’s morally wrong not to keep someone alive if it’s possible to do so - no matter what sort of state they’re in - or else (as I’ve known some people say) ‘I can’t bear to let him/her go.’ Which to me is utterly incomprehensible in such circumstances.

My mother was an intensely private person who would have been aghast if she could have seen how she ended up - a truly pitiful shell, no clue about anything, unable to hold any sort of conversation - with double incontinence on top.

I knew 100% that she’d have wanted to be allowed to die if Nature was trying to let her go. For that reason we agreed with care home staff (she went in at 89) that unless it were absolutely necessary (e.g. in the case of a 2nd broken hip) there should be no hospital, and certainly no ‘striving to keep alive’.

In the event we didn’t need to have any such discussion - she went downhill suddenly and it was all over within about 36 hours.

@Stonehengecalling I work in community nursing and am seeing more and more patients with dementia being cared for at home, e.g. 3 x daily care package. They are not safe to be kept at home, falling etc between visits or wandering out of the house but the family won’t accept that they aren’t safe to be home. I agree with you that it now seems to be quantity instead of quality of life.

I am intending on drawing up a living will to state I do not want on going treatment should I get dementia or Alzheimer’s, I can’t think of anything worse than sitting there not knowing my own kids etc. I’ve been there with family members and it’s very upsetting

3teens2cats I agree - discussing death is taboo and I expect this goes for doctors as much as relatives. Far less uncomfortable to offer possible routes forward than suggest that the patient is at the end of their life.

In reading the book Being Mortal by Atal Gawande (please read it if your parent has dementia, it may change how you view end of life, it has done for me) - the most useful insight has been to make sure I know what my parent’s wishes are - not too late to do this, and I’m hoping that someone from the Alzheimer’s society or perhaps the doctor might help me go through the conversation before it is too late, would be doing this now but for lockdown), even though the conversation is likely to be very difficult, and also to ask the doctors the questions.... ‘what is the best outcome of this procedure that you have seen’ and ‘what is the worst outcome that you have seen’ in order to give the doctor the opportunity to openly discuss difficult things.

I’m so sorry to hear everyone’s stories. This is a very useful thread - thanks OP. The more that these things are discussed, the better equipped we can all become to plan for an end of life that fits the patient’s wishes, rather than going through the pain of trying to second guess what they would have wanted.

To add, I take a lot of bloods and often get requests from GPs for bloods for very elderly dementia patients who really hate it and it’s usually a huge struggle to get it. I often actually directly question the GP if this is really fair on the patient and if it is really needed

I think people are just afraid to let go and say that final goodbye so put it off as long as possible, however selfish that may seem.

@TooOldforBouncyCastles thank you, sorry to hear about your experience. You’ve articulated this so well, we have to find ways of reconciling guilt. And we each have to search within ourselves to try to establish where that guilt is coming from, what emotional need are we trying to fulfil, why is it there. All soul searching questions we each think about when our loved ones approach death.

The word guilt really is something that people can relate to. It makes us aware of how our instinct may be at odds with our circumstances and is a really good point for starting to address this difficult conversation.

My father has advanced dementia and is in care. He has no quality of life and no desire to continue living. He is skeletal but the staff in the care home keep making him eat. I dont mean force feeding, but pressurising, making him take mouthfuls, weekly weigh ins. FFS just stop!! It's basically torture for all concerned. Let him die.

@dementedma I feel exactly the same, not everyone will, but it’s important to be able to say and to know that you’re not alone.

Can you clarify what you are recommending OP? Withdrawal of antibiotics and fluids?

I have a family member who spent five of the ten years she was in a care home in a state where she couldn’t communicate verbally At All. She could make one consonant sound for some of that - sssss - but that was it. Nearly two years on a liquid diet because she couldn’t swallow lumpy food. I forget how long but a good chunk of time in a specially adapted chair as she was unable to walk any more. She was doubly incontinent all that time. The care home looked after her amazingly but it was no life.

I do think there’s a perception from people who haven’t seen end stage dementia up close (and I have a family member from another side who I put in this category) that losing your brain functions is “going gaga”: muddling up your words and forgetting how people are but “at least they’re happy in their own world”. And I imagine decisions are taken from that hopeful but misguided state.

@ yenniferofvengeberg and @conifergate
I think you two have disagreed over the remit of LPOA for health and welfare. My understanding is that it primarily relates to basic healthcare but can state decisions about life sustaining treatment if included and made clear in the document.

There is a section where you can expressly state your choices over these decisions.

Either way if there were a disagreement it could be appealed under court of protection. (Everyone loses when you get to this point IMO)

I would sincerely hope that any HCP would value the input from a relative who knew that individual and appeared to be acting in best interests regardless of the status of the LPOA. Equally I hope that the burden of decision is made easier by the medical team facilitating this discussion. Arguing over the status of a LPOA risks a misunderstanding over why people are making a decision e.g. about control

I think it's a very important debate and thank you for raising it. I go to see my stepmother in her care home, she has Alzheimer's. I haven't been allowed to visit since March so I haven't seen her recently but when I last saw her she wasn't very mobile and talking complete nonsense but she was still able to enjoy life to her new limited degree. She enjoyed her food and she loved the attention of a visitor even if she didn't quite remember who they were. By complete contrast I occasionally saw other residents in their rooms (not trying to look but one was directly opposite her room with the door wide open). They were totally immobile, asleep all the time and had feeding tubes and mattresses that did the moving for them. There's a limit - on the basis that most people I've ever spoken to about this say they wouldn't want this stage of their life to be prolonged in that situation I would deduce that a high proportion of dementia sufferers would feel the same, if they were able to communicate. That's why I think it's so incredibly important that there is general awareness of how dementia progresses. Most people who think of dementia think 'lost glasses/forgotten names) but many people don't realise that the later stages are so awful.

Op I've worked extensively in homes for older adults.

I think if everyone had to do a stint we would have new laws very quickly, esp if mps had to work in them and also be beside the death beds if people dying slow slow panicky deaths. Until they are pumped mute and zombie by palliative drugs.

It's beyond disgusting.

I want legal legislation now, at mid 40 to say... If I get dementia, and I can't care for myself, I don't know who my family is... I don't want to be put totally vulnerable into a home, I want to be put down!.
Why on earth can't we choose jowl we die.
If I get any terminal condition, I want to say... I can cope no more... Put me down.

It's terrifying to think I would have to endure this drawn out painful death!...
It's my life it should be my choice.

It makes me so cross. Many other countries are so further ahead with this.

It's distressing for the person with the terminal illness or dementia, its beyond distressing for the family, it's a waste of money and resources

@ConiferGate - "It makes me think. It feels like human instinct to feel like we have fought for everything we can before accepting death. From personal experience, it’s a great comfort knowing you did “everything you could”. Perhaps for some people that “everything” is directed at medical interventions which is why they don’t want to let go of hope until they have to. Perhaps also, not letting go is more about us than it is about the patient, about meeting our own emotional needs (feeling like we’ve done everything we can) possibly over and above those of the patient (letting them go peacefully)."

That's what was going on in my family dynamic. It's such a complicated time.

Maybe the conversation needs to change, and we need to talk about letting go with the knowledge that we as loved ones did “everything we could, everything they would have wanted and nothing they wouldn’t have wanted”."

I agree. I was actually painted to be very uncaring about my mum because I didn't 'fight' to keep her alive. But she had said to me many times that she didn't want to go to hospital any more, and before she even got seriously ill, that she wanted to die peacefully at home. To me it's quality versus quantity to put it bluntly.

It's good to have this discussion. I hope my wishes as I've written in an Advanced Directive, are respected if I am ever in this position.

@conifergate. Thank you

Aargh I should have bolded some bits of my last post, as I was quoting @ConiferGate ..

[quote ConiferGate]@dementedma I feel exactly the same, not everyone will, but it’s important to be able to say and to know that you’re not alone.[/quote]

Me too.

I'm been nursing for thirty years. I hear you OP.
Too many people live too long.

@Aquicknamechange2019 look up the 8 pillars of dementia care, this outlines exactly what support people should be getting one year post diagnosis. Going forward after this point, he should have a point of contact within the older adults community team, whether that be mental health nurse or social worker. Does he have a CPN? I know that some NHS boards are slower at rolling out this new model of dementia care than others; they are currently building a new team to facilitate this in two health boards that I know of. What board is he under (you can PM me if you don't want to say here - I'm working today but will get back to you when I get a sec).

@TooOldforBouncyCastles you’re right, the idea of “control” is totally misplaced and shouldn’t even enter into a discussion over care at end of life.

@YenniferOfVengeberg you said:
It is NOT the responsibility of a family to accept or refuse treatment, it is NOT the responsibility of the family to propose end of life care

And I replied LPA gives the family full authority over any directives in place, directives. Which are different but essential components of decisions, which anyone with an ounce of experience would know are best reached collaboratively, especially at end of life.

So you’re wrong, it is my responsibility to accept and refuse treatment. My mother entrusted me to be her voice, it is my responsibility to make sure her voice is heard. Whether or not an HCP accepts my input is a different question entirely, but as PP stated, for anyone to reach the stage where an intervention has to be made to arbitrate the two people represents a complete breakdown in trust and communication.

My mother has been saying for some time, since well before her dementia worsened, that she wants to be dead, and she means it. I had no hesitation in signing a DNR directive.

FWIW every single Dr who has raised the subject of not continuing life saving treatment has done so kindly, sensitively and allowed me to contribute to a discussion.

One discussion was instigated by me and the Dr looked a bit uncomfortable and continued with the pacemaker.

One discussion was unexpected (my sister) and he accepted my shut down of the conversation. A day later we received the devastating news she had terminal cancer and the discussion was reopened and I agreed to no further treatment and palliative care.