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?

To me there's a big difference between a DNR and withholding fluids/antibiotics.

Someone very dear to me was deteriorating over many years, but still recognised us (& loved seeing us) until almost the end. She was peg fed & in a nursing home. But we still wanted her treated if she had an infection.

@saraclara I’m sorry it made you feel like that.

@greyinganddecaying of course you would. I’m talking about end stage dementia- where the patient needs 24/7 care and doesn’t know who or where they are or who anyone else is.

The antibiotics are because dementia patients can be prone to UTIs which can make them more confused and distressed. Fluids are important for keeping the patient comfortable, until the very final stages of their end of life journey.

Are you really a HCP?

Are you really a HCP?
Yep. Clearly can’t prove it without outing myself. It’s MN- you can believe or not believe. I’ve found the thread helpful as have a number of pp. I’m genuinely sorry towards those I’ve upset.

I think if you're in a hospital you won't see the ones who stay home/at their nursing home. My mothers wishes were to "let her go" which were discussed prior to me getting her health and welfare power of attorney. What that turned out to mean in reality - once she was in the nursing home bed bound, mute and incontinent, unable to do anything for herself with advanced vascular dementia - was that we didn't want her to leave there to receive IV antibiotic treatment in hospital. It was not in her best interests. She died very peacefully in mid September with my father, me and one of her grand daughters with her, in her nursing home where she'd been for nearly two years and where all the staff knew her and genuinely liked her, they were coming in to say goodbye to her as they went off shift. It was pneumonia that finished her off in the end.

I think because we are generally shielded from death and the actual act of dying in modern society, we see it as something to be feared, when actually it can be a blessed release from prolonged suffering which nobody should have to go through. I hope that if dementia turns out to be my future, by that time assisted dying is legal in England. Nobody should be forced to suffer that if they don't want to.

Ive been here before and im here again.

My dad had dementia. God forgive me but i was glad when he went - he would have hated his life.

ÀqqNow its happening to my mum, she is in hospital at the moment after breaking her hip.

Posted too soon, i want her to survive, this past year has been awful but i believe she could have quality of life. Even if just for a little while.

So it very much depends on the individual. My dad had lung cancer and was two weeks from diagnosis to dying. I felt it was mercifull

See, even describing yourself as fully revalidated is unusual.

[quote Stonehengecalling]@greyinganddecaying of course you would. I’m talking about end stage dementia- where the patient needs 24/7 care and doesn’t know who or where they are or who anyone else is.[/quote]

This person I'm talking about had 24h care, was often asleep & was incapable of any kind of independent movement. She was dying, slowly, but we still expected her to have infections treated & needs met

Mmmmmmmnnnn is questioning the validity of your expertise.

I'm not sure if you're still looking for replies but here is my experience. Up until sepsis my relative had very mild dementia so it was a huge shock when on MAU she started recovering with antibiotics but could no longer talk properly or walk and was in such distress. There was no explanation for this as the HCPs just repeated it was the dementia, but wouldn't accept that a week before she was still in voluntary work supporting people with dementia herself. We tried to get some clear information about the likely recovery. It was very difficult. We desperately tried to share and seek accurate info and eventually we decided to stop treatment because it seemed obvious it was a delirium and we did not believe the delirium would improve because the infection cause hadn't been treated so she would be stuck on antibiotics forever and knew she would not want to be left unable to speak or walk.

@CherryPavlova

See, even describing yourself as fully revalidated is unusual.

No. It really isn’t. How would you like me to describe myself? (Other than giving you my GMC number and place of work). Would ‘extension to my revalidation date because I’m not up to date with appraisals’ be better?

I’m not sure what your background is, But you do have an awful lot of opinions and express them all regularly on MN.

Thank you @Flittingaboutagain. I’m so sorry for your loss.

Honestly, I don’t think people with dementia should have their lives prolonged in this way, and I certainly don’t want mine to be. But it is very hard for a family member to make that decision and not feel a ton of guilt.

I don’t believe the NHS is there for people with dementia like they are for other diseases. Besides diagnosis families are left entirely on their own to manage degenerative mental health, there is no support, social services are then called upon to help with a medical condition, which is not funded for care when it is despite needed. By the time the family member is at their parents bedside and meets you, finally treating a UTI, a broken bone from a fall, severe dehydration and weight loss, don’t be surprised if they are a little exhausted and incredulous. If dementia was actually treated as a medical condition and not a social problem the families would be more engaged with hospitals. There should be much more awareness, TV ads like the stroke and cancer ones advising older people to speak to the doctor if they have memory problems and start setting their affairs in order. Instead it’s just ignored.

I spent the last 12 months living with and caring for my MIL who had Alzheimer’s.

I can explain/tell you the following...

As awful as it is the prospect of MIL dying was terrible, the prospect of her living for years was terrible too. There is no easy path, no easy choice and whatever choice you make you wonder if it’s the best choice for them or just the easiest choice for you. We were wracked with guilt many times over decisions that had to be made, like respite care/medication/dosages/interventions. These decisions are hard, because you can’t just ask the person what they want, because they aren’t capable of giving you an answer.

Before illness my MIL was an incredibly smart, intelligent woman, soft spoken and gentle. Alzheimer’s affected her terribly, she was aggressive, violent, shouted and raged and un accepting of any help. We used to have carers come in to help, but she would hit them, and send them away, in the end we cancelled the care because it wasn’t getting done and only seemed to be upsetting MIL more. Personal care then fell to us, and personal care for someone who is doubly incontinent who doesn’t want to be touched, doesn’t want to cooperate and in fact thinks and feels as if they are being attacked is beyond hard. I felt guilty for cleaning her up/changing her pad and clothes when really she didn’t care about the clothes, the dirty nappy, and all she wanted was to be left alone and I’m basically cleaning her against her will. Thing is though I can’t leave her alone to sit in filth and to become sore, that in itself would be cruel and considered neglectful and I would also feel incredibly guilty if I was to do that. In the end we had to settle for somewhere in between, which was more often than she would have liked, less than I would have liked, but was just enough to not let her suffer. In situations like theses your brain is so full of just getting through the day, trying to cope, trying to do a good job, feeling like your never doing a good enough job, very little headspace is left over to consider much of anything else.

Alzheimer’s or dementia is progressive and you are constantly making tiny or big adjustments to the level of care you provide. To some degree it’s rather like being the frog slowly being heated in the pot and not realising your boiling to death. You always feel like you are playing catch up, there is nothing predictable about it. It’s very hard to plan, hard to know what you will do in certain situations until they are thrust upon you. For instance I always said that I didn’t want to be dealing with issues of incontinence when the time came, yet when that time came deal with it is exactly what I did. You just don’t know these things sometimes until you get there.

Sadly we lost my MIL at the end of April, it was quiet unexpected as she was physically very well. MIL had no clue or understanding that she was ill, as is often the case with Alzheimer’s or dementia. She had a real love of food, something I was happy for as it was one of the few ways to calm her and make her happy for a short while. One day she refused a meal, until she refused to eat all together. I sought medical advice which was tough during lockdown and was advised to just to try and keep her fluids up. We weren’t offered any other intervention and I don’t know if this would have been different either had this been going on at any other time than in the first lockdown. MIL soon refused fluids too, and it was at this point I recognised we were at end of life care. It’s the most haunting and harrowing thing I have ever had to do. I can only hope that MIL had made the choice to refuse the things she knew would sustain her life. I can only hope that she didn’t suffer, she was supposed to have a nurse come to administer some morphine but sadly this didn’t reach us in time before her passing.

Those final days of caring for MIL will haunt me forever. I comfort myself with the fact that her passing wasn’t though any decision we did or did not make, and that she passed away at home surrounded by those who know and love her.

Yes it would have been kinder had she not suffered those last months through anger and aggression, fear and confusion, unable to enjoy the love and care that was given to her, but I don’t ever feel like that was our choice to make. Would we have insisted on CPR for her if it had be required, no....but we treated her symptoms and managed her pain and did as best we could. This, I suspect is what most people in this situation do.

As my post above, there is enough guilt surrounding caring for someone suffering with Alzheimer’s or dementia without having to have the guilt of deciding when they should die too.

why have you started a discussion like this on here.
what are you trying to achieve.
i think it is ill-considered.
and the title does not indicate the tone and content accurately.
i expected it to be a relative asking for advice on caring for someone with dementia.
wish i had not seen it.

I’m in agreement with you OP. I went to visit a very elderly relative in hospital who had a chest infection but also advanced dementia and was bed bound due to a broken hip. The dr took me through his treatment plan which included antibiotics. I asked to speak to him privately and questioned whether this was in my relative’s best interests given his lack of quality of life. The dr looked taken aback at this and then I felt awkward for having asked, as though I’d stepped over a line for even asking. He then recovered and said he would discuss it with the medical team. The thing is the 2 family members who were next of kin had never been asked what their views were and they were just going along with what the drs said. It really surprised me that that conversation hadn’t been had previously. He was distressed by the medical procedures in hospital, confused and upset and flailing at the nurses. I would want to be allowed to die peacefully in that situation, with medicine to make me comfortable.

I totally agree with you OP. I'm a hcp (not a dr) and am regularly shocked and horrified by the painful and pointless procedures I am ordered to perform on these patients.

However as to why relatives want it, I tell you one side of it you may not see if you are a Dr. I sometimes but only rarely see cases where the team is telling the relatives it would be best to stop treatment and the relatives disagree. Much more often I see ambivilance on both sides. The team will say "well she is very sick at the moment, but I suppose there is are a few things we can do... ", the relatives are saying "OK well I don't want her to suffer but if you think that would help... ".

Many times I've done a test for someone (I'm a radiographer), and the dr will say to me (before the family arrives) "what a waste this test is, so pointless, but the family wants it". Later when the family has arrived and the dr has left, the family will say to me "why are we even doing this test, it's so pointless, but the dr ordered it". A misunderstanding on both sides maybe?

@Flynow that is an interesting point. I definitely felt in the case of my relative that it wasn’t that anyone was pushing for him to have the treatment, just that no one had even talked about it so they were carrying on. Whereas when my mum was terminally in and the GP came out to the house she asked me what our wishes were and if there was a DNR in place - that totally shocked me at the time but it was absolutely the right thing to do. Maybe hospital drs need more training on this aspect?

Yes I've seen exactly that happen. The team is thinking 'the relatives haven't said anything, I guess we have to continue'. Meanwhile the relatives are thinking 'the doctors haven't mentioned stopping, they know what they are doing'. Some are under the impression that once a doctor orders something, it has to be done, and they aren't allowed to refuse or leave hospital until its done. Which of course isn't true unless you are sectioned under the mental health act.

I don't know if it's a lack of training though. The thing is, so many doctors practise "defensive medicine"* (and I completely understand why, I'm not doctor bashing, it's a systemic problem) so they often order more treatments and tests, just in case later someone complained later. The family has to be quite strong and knowledgeable to decline and not everyone happens to be.

• Defensive medicine - practising medicine in not in a way that is best for the patient, but in such a way that no one could ever possibly complain.

I believe what you are describing is very cruel. If the law says euthanasia is illegal then health care providers need to provide quality health care for all patients. Just because someone has dementia it does not mean that they are immune to pain and suffering.

Personally I support euthanasia if a person has so elected at a competent time in their life - much the same as organ donation. I would not like to have an illness where my quality of life has gone. However, the law will not allow me to make that choice, so if I am in that situation I would expect proper care from those paid to look after me, not neglect and interminable suffering.

@FlyNow you are spot on with the situation you describe (radiographer here too!). I’ve also been on the other side of it with my mum, who eventually died of advanced Alzheimer’s.