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?

I think families, unless it's the person doing the day to day caring for someone, often only see the 'best side' of their loved one when they aren't involved in the day to day care.
They see them washed and clean, clean clothes etc and have no knowledge (and how would they) of how much intervention has been needed to get to that point. They may have been able to dress themselves 6 months ago, however at that point, they now don't have enough function left to wash their face, even with direction. But an observer as such would never really know as they are seeing someone clean and dressed each visit.
Although deterioration is discussed in a setting such as mine, it's easier to deny it's as bad as it is when you don't see the results every day, when the picture doesn't change. I've seen family members only start to accept decline when there's weight loss, or when behaviour is markedly different. When someone declines gradually, sometimes even care staff don't notice how much decline there is until the care notes are reviewed for the monthly care plan review to be updated and we note that X has needed full assistance for dressing more days than not for example.
It can be quite a shock to suddenly realise that a loved one can no longer wash or dress themselves, feed themselves when you don't see it in person.

I think this is a really interesting thread and don't understand the vitriol the OP has received at all.

Thank you for the link to the advanced directive form, DH and I will be completing it.

I had hoped that covid would lead more people to have difficult conversations about death. But this thread demonstrates that a lot of people just can't have a discussion about it .

This is a topic that absolutely needs open discussion. My father had Parkinson's disease and associated dementia. It was relatively late onset (69) but very aggressive in its progression - within 5 years he had gone from having mild tremor and balance issues to being completely helpless, non-verbal, doubly incontinent and distressed and aggressive. He was in a specialist nursing home and had the best possible care, but was it life? My mother had POA and while he still had capacity, discussed the future with him. He refused euthanasia (which was an option, he was in the Netherlands) but agreed no aggressive or invasive treatment in case of serious illness and also a DNR.

In 2016 he contracted norovirus, which was sweeping through the home, and ended up with aspiration pneumonia. So he was given no antibiotics, wasn't taken to hospital but was instead made comfortable - pain relief, oxygen when he needed it - and he passed peacefully.

Neither my mother nor my Dsis and I could have contemplated having any kind of 'lifesaving' treatment in the situation he was in. He had no life. But at least we all had an agreed protocol to work from.

I often used to experience relatives objecting to the administration of pain relief in case it led to death or even sleepiness, so the person would be less inclined to eat. Rejecting food and fluids is common and occurs naturally as the body winds down.

Imagine, having no pain relief and somebody forcing you to eat or drink on top of this.

I've set up an advance directive. I only hope the doctors don't try to over ride it. Two none dementia people that I nursed refused PEG tubes. Their relatives insisted on them being fitted. The doctors fitted the tubes and the people continued to live for several years.

I've not had to deal with severe dementia, but a grandparent did have significant cognitive impairment (not technically dementia, but lots of the same symptoms), lots of falls and more hospital admissions than I care to remember before a heart attack eventually took him.

Seeing the other patients on the same geriatric wards (mid / late 00s) - most of which I presume had severe dementia - cemented fairly firmly in my mind that people can live too long. In many cases, it seemed that if a dog was in that state you'd be called cruel if you didn't euthanase it.

At the time we had some very pragmatic discussions about what we felt was most appropriate - and at the lowest points considered requesting that antibiotics be withheld so the pneumonia could take its course. We were acutely aware that this was a highly educated (PhD), retired professional who just didn't have the capacity to do the things he enjoyed, and he really wasn't enjoying life much any more.

I now have a close relative in her late 90s who is physically frail, mildly forgetful but still independent with support. Thankfully we are all (including her) of the opinion that CPR would be highly inappropriate, and while non-invasive treatment (eg antibiotics) is entirely sensible, much more would be likely to do more harm than good. In her early 90s she was offered heart surgery but turned it down - I'm told the doctor looked relieved and thought she'd made the right decision.

I just hope that her body gives out before her mind does - and I say that because I love her and don't want her to suffer like so many people do.

@Retiremental how many folk have ACPs? At least 60-70% of the folk who were in my ward off the top of my head. And if you went against a patient/family directive and gave them antibiotics on my shift when it been specified in said ACP that they weren't to have them, I would be heading you your arse on a plate. As would your regulatory body.

As I’ve mentioned earlier in the thread on living with and completely caring for my Alzheimer’s MIL until her death with us at home. Another point I have thought to mention is that we were allocated 2 social workers. One for MIL and one for us to make sure we coped.

Now I know this area of social work is completely underfunded, so I am not blaming the social workers directly here. I will just say that the wheels of support turn far too slowly to be of any real help. When MIL first started refusing her carers we asked for help. MIL had become violent and aggressive and one carer alone couldn’t deal with her on their own. After many weeks of waiting we were finally told that MIL would be given an at home assessment and they would decide how many carers she needed. Despite the assessment all caring and personal care ended up falling to DH and I, as we wouldn’t leave if we were scratched/hit/bitten, but what happens to people who are unable to do what we did and take up that care?

Due to this we asked the social workers for an evaluation of MIL’s medications to see if we could increase dosages or something else could be prescribed in order to help MIL be calm and more able to accept the personal care she needed. This was a fight, both social workers advised against giving any extra medication as it would make MIL a zombie and acted as though we were just trying to make things easier on ourselves. They said things like, I know dealing with MIL is hard, but she is mobile and physically well, increasing her drugs will make her immobile or unsteady and prone to falls and at risk of injury. Trying to explain that actually MIL raging round the house banging on windows and doors, screaming and shouting at all hours of the day and night was far worse. The poor woman was in an almost constant state of aggression and agitation.

In the end the social workers agreed to send a doctor for a medication review and fortunately that doctor was absolutely lovely and completely agreed with the increasing of medication was in MIL’s best interests. If we hadn’t had the help of that doctor I don’t know if we would have managed to have cared for MIL as well as we did. Now if MIL had been in a home this medication would have been prescribed without question, her aggression and needs meant that they would have medicated her far beyond what we could or would do at home.

We could have put MIL into a care home, her needs were certainly high enough to justify it. The reason we didn’t was because with her being as violent and aggressive as she was, we felt she would have a very difficult and miserable time in a care home. We didn’t feel we would be benefiting anybody apart from ourselves by placing in her in a home. I can’t even say myself here if we made the right choice or not, but it certainly felt like it at the time.

What is absolutely clear is that there is a huge lack of understanding about what is involved in the care of those suffering dementia or Alzheimer’s. A shocking lack of understanding also came from the social workers assigned to us. No a twiddle blanket doesn’t work, and no the incontience pads don’t work either when she won’t keep them on and shreds them at every opportunity, and you try getting someone to sleep who thinks 3am is party time. More understanding from them did come after MIL spent a few days in respite care while we made some adjustments to the house for her. When the respite care home suffered with all the same issues and reported it to the social workers, and in fact refused MIL any repeat stays, only then did it feel as though they really understood we weren’t just being dramatic. However getting any actual support was impossible.

If other relatives and loved ones struggled as we did, it’s not hard to understand how easy it is to lack the support of those around you and understanding from those who are meant to support you, to have any headspace left to make decisions about end of life care. Especially when your already suffering under a mountain of guilt over the care and quality of life your loved one has. Every single decision big or small takes a large dose of effort, none are easy to make, even when it seems like they should be.

I’m not bashing social workers here, it’s not their fault they are over worked and underfunded. In fact I’m sure that some go above and beyond and do a wonderful job. It’s just simply that the care and support available to people in this position and their families is severely lacking in speed, effectiveness and efficiency. As far as I can see this is only going to be an ever increasing problem as we all live longer and are more likely to suffer dementia in older age.

Sorry for the length of this post

@Lillygolightly . I take my hat off to you and the thousands of other carer- relatives like you. You are amazing and I don’t know how you do it.

@Lillygolightly so sorry your MIL and you and your DH had to go through that. People who have not experienced a close relative with severe dementia do not appreciate the distress of the sufferer. They are scared and angry and frightened with no escape - it is a terrible thing for anyone to have to go through. Medicine often seems able to keep them alive, but not alleviate that suffering. No one should have to suffer long periods of terror and distress, often months or years. It is horrific what people with dementia often have to endure but no one wants to really openly admit it.

Lilly I hope you made a complaint about the social workers or pointed out to their line managers their lack of knowledge of Altzheimers.

@Andante57 I share @Lillygolightly’s experiences. We didn’t complain because we were overwhelmed and this experience was repeated with nearly every single professional that visited. It was soul destroying, so much so that we stopped engaging because building up hope of help only to be met with people who had no comprehension of the issues we faced was so depressing.
I feel utterly traumatised by my experience of caring for someone with advanced dementia

@TooOldforBouncyCastles yes I am utterly traumatised too. We only lost MIL at the end of April. Those final days with her will haunt me forever. I shielded DH from the worst of it, and I only got through with the help of a very wonderful friend who happened to work as a palliative care nurse. Out of all the various professionals who touched our lives during MIL’s illness, my friend helped me more than any of those ever had. She was at the other end of the phone (during first lockdown) told me everything I should expect, told me what I needed to do and basically held my hand through it all. I would have been absolutely and utterly lost without her. I will be forever grateful to her.

As for complaining about the social workers, yes it has crossed my mind to do this. Complaining about them won’t bring any benefit to me but perhaps it could for others. I’m sure their intentions were good, but the fact is we were promised so much and delivered so little. It felt very much like we were a checkbox, ticked off as no harm/no threat/coping and then just left alone. We also stopped engaging too, because it just felt like banging your head against a brick wall. You kept hoping for something that would never come, and what was supposed to be a lifeline felt like nothing more than a limp string drifting aimlessly in stormy seas.

For us this is all very fresh and with it happening during lockdown with 2 school age DC and a toddler complaining has felt like yet just another thing to deal with. I am aware though that for the good of others it’s what I should do.

So sorry for everyone else who has experienced this, or who is going through similar

We don’t want them kept alive. It isn’t our choice that they’re given medication. Nobody asked us. My family member had been in a specialist home for several years. She survived covid, plus various auto immune issues. Then last week, she was found on the floor, presumably a fall. Taken to hospital and the doctor said she wouldn’t wake up. She was put in a room to die. Took 2 days. Had it been my dog, I’d have ended his suffering with a pain free visit to the vet, but we’re not allowed to end a person’s suffering. It’s insane and cruel.

I assure, not everyone wants you to keep their relative alive. I would have asked for her to be kindly overdosed the minute she lost mental capacity had it been allowed. I can’t imagine anyone wanting to keep someone alive under those circumstances. It isn’t the same person any longer. I cried my eyes out last time I saw her. She smiled but had no idea who we were and just shuffled endlessly round the circular walk. Horrific for her and us.

I feel very strongly that an assisted death law is desperately needed in the U.K. Very robust checks and rules would be needed, I’m sure some people might happily rid themselves of someone who isn’t at the point of no return, but it would be a blessed relief for some.

I should say, we don’t ALL want them kept alive if they are in a very bad way.

It perhaps beats pointing out there is a vast difference between keeping alive - providing compassionate care, symptom control, palliation and actively killing people.
Killing people without capacity to decide they want to die remains a criminal offence (usually murder) in every country whose laws I know.
It’s why Gosport Hospital was the subject of a scandal, why Shipman was imprisoned on life sentences. Killing people is not lawful and to suggest doctors might want to ‘help put’ by committing murder is at best ill thought through.

Giving fluids is a basic human right where people can still drink. Withholding fluids (as the OP suggests might be good) went out the window when the Liverpool Care Pathway was discredited in about 2012/2013. If it’s happening in any acute hospital in England the trust is laying themselves open to prosecution. It’s a horrible way to treat people. Can you imagine lying with minimal consciousness, desperately thirsty, lips dry and cracking, sores developing in your mouth because someone thought a few millilitres of Ribera might impact on your outcomes?
No wonder some people with dementia exhibit such distressed behaviour if they are treated that way by people claiming to me doctors working with the vulnerable elderly.

For what it’s worth cherry I completely agree with you, and I am most unhappy with this thread.

I think this thread is important, and dealing with dementia is different for different people. A lot of posters agree with the OP, based on their own personal experiences. The OP was brave to stick her head above the parapet to even post about the subject.

I can only hope that if my mum ever ends up on end of life care she's treated like a human being and someone's parent with all the complicated feelings that her family might have about her care taken into account ,and not just 'someone old with dementia'

I hope she is not treated by someone like the OP of this thread.

No gin it isn’t brave to name change and post on an anonymous website in a contemptuous way about people, it’s the opposite of brave actually.

I’ve assessed hundreds of older people over my career (not a medic) and very, very few have ACP/AD. I was part of a project and there were shockingly few with POA for health and welfare, although the percentage was much higher for those with POA vs those with ACP/AD

There is the complicating factor of wishes are written. They need to be very specific; “I do not wish to be intubated if my fibrotic lung disease progresses” vs “no hospital treatment if I have dementia”.

I have no problem with straight talking but you can still be empathetic. Even on a forum, if you’re speaking as a professional, ‘mute’ isn’t a word that’s particularly palatable. The description of that person (unable to communicate, unable to feed themselves and not continent) will resonate with someone on here and that person is their loved one.

Can’t believe this isn’t talked about more! I’ve had lengthy discussions with my Mum about this, she wants no intervention at all should this happen to her and I agree. I am talking zero intervention, no prescriptions at all. I’ve worked with dementia patients for years and their prescription drugs are ridiculous. So many pills stopping them from dying naturally, I find in madness.
I have also read so many stories since Covid such as “I’m so scared my 90 year old Dad with dementia (in a home) will get covid” I find that shocking. I can hand in heart say if either of my parents had dementia now, I would welcome covid if it helped them to go and avoid the hell of dementia

I also agree with some sentiments made by @CherryPavlova. There is a shocking lack of consideration of mental capacity from the OP. Unfortunately, this occasionally happens in hospitals. Fortunately, there protective networks around the person to prevent them having their rights infringed upon. I will add that the vast majority of hospital medics are excellent in this area and I try not to let the very few rotten apples cloud my judgement.

@Newdonewhugh

” I have also read so many stories since Covid such as “I’m so scared my 90 year old Dad with dementia (in a home) will get covid” I find that shocking. I can hand in heart say if either of my parents had dementia now, I would welcome covid if it helped them to go and avoid the hell of dementia”

I would be distraught if my elderly beloved grandmother died of Covid, not because I expect her to live forever but because she wouldn’t be able to have her family around her at the end. She also wouldn’t be able to have a big, religious funeral. Surely it’s pretty obvious in most cases that many people wish to have unrestricted access to their loved one at the end. That’s why so many people are sad and scared.

OP I would be happy for you to speak to me frankly about these issues and it has made me realise that I should have a conversation with my parents about their wishes. It is a horrifying thought, but I need to do it. Thank you for posting.

to all posters who have suffered facing decisions like this.

@Newdonewhugh

Can’t believe this isn’t talked about more! I’ve had lengthy discussions with my Mum about this, she wants no intervention at all should this happen to her and I agree. I am talking zero intervention, no prescriptions at all. I’ve worked with dementia patients for years and their prescription drugs are ridiculous. So many pills stopping them from dying naturally, I find in madness. I have also read so many stories since Covid such as “I’m so scared my 90 year old Dad with dementia (in a home) will get covid” I find that shocking. I can hand in heart say if either of my parents had dementia now, I would welcome covid if it helped them to go and avoid the hell of dementia

If you’ve worked with dementia patients for years, you’ll know that pharmacology plays a HUGE role in the management of symptoms. Absolutely GPs and pharmacists need to be much more responsive regarding polypharmacy but are you really saying that a patient with dementia, who is not distressed or agitated, who is able and willing to take medication should be denied drugs such as beta blockers, benzodiazepines etc?