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'm a social worker, OP, and I often wonder the same thing.

My nan was a shell by the time she finally died, so sad, but I'd mourned her long before that. If I could have I'd have stopped her meds and let her go much sooner. Not my decision though,

I see so many families clinging on and it's almost always for their own conscience not for the good of the person.

And most people with first hand experience of a much loved relative with dementia agree with you @Stonehengecalling. Hopefully more doctors will share your view as time goes on.

@Stonehengecalling

My colleagues and I used to constantly remark upon how the public had bayed for the removal of the LCP, but weren't now aware that this meant people were now being given substandard pain and symptom relief.

Shipman led to the chronic undersprescribing of opiates in terminal care and dosages have steadily decreased. GPs lack the confidence to prescribe these medications, so patients go without.

@Stonehengecalling

Why are we as a society prepared to write off dementia patients and accept sub standard levels of care?

I don’t think we are. Many patients with dementia do get wonderful care. (FWIW I run a marathon every year to raise money for a dementia charity). The point of the thread was to discuss end of life care for those with end stage dementia- and it’s really clear that we still have a long way to go getting this right for patients, families, carers and HCPs.

So are you going to start by undertaking some further training on end of life care yourself OP? Given your assertion that antibiotics have no place in palliative care? I can recommend the Princess Alice certificate as a starting point.

@RosyPickle

Yes there are what’s known at the 7 stages

www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Depending on the type of Alzheimer’s or Dementia this can be somewhat varied, in rates of decline or periods of different stages. Some people can have a very slow decline and yet a rapid stage 7 which is end stage. Others can have a fairly rapid decline but a very long stage 7.

My own MIL was stage 6 when we took on her care. She had been a very steady stage 5 for a long time prior to that. I also don’t think she was officially diagnosed until stage 3, and this happens to many.

I feared a very long stage 7 for my MIL, but quiet luckily it wasn’t in the end.

It’s very difficult to say that a particular stage is the right time to consider palliative care. The best way to explain this, is early on in caring for MIL, and still finding my feet with it all MIL got a nasty UTI. Common to people with dementia/Alzheimer’s as they forget to drink, or as in my MIL’s case didn’t want to to drink much. MIL suddenly had a decline in her cognition, became more aggressive and agitated than usual obviously because she was clearly in pain or uncomfortable yet could not explain or communicate what was wrong. The doctor treated her with antibiotics and she recovered well, became calmer and more settled again. A different patient may be treated in the same way, and whilst they may recover from the infection the cognitive decline often remains. The point being that you don’t know if this will happen or not.

We would have some days or weeks where MIL would seem to have declined, and you start to wonder if the illness has progressed again. Then as if by magic she would have a few good weeks, and you’d feel awful for wondering or thinking that they were nearing the end. It’s torturous, you never really know what to expect, you can think many things only to be seemingly proved wrong. It’s no wonder than many families struggle when nearing the end, because the fact is is that they’ve thought they were nearing the end before, only for that not to be the case.

This is true even in my own case, as MIL had lost her swallow and was refusing food and drink. All I could do was sponge her lips, and even as I sat by her bedside doing this very thing, knowing it was an end of life thing to be doing (I had done it with my own nan following a stroke) I did still wonder if MIL might turn a corner and somehow get better. Ridiculous as that is to admit, because I’m sure that to anybody else the end looks so very obvious, but when you’ve lived with dementia or Alzheimer’s close up you soon learn not to assume anything, because you just never know.

This is 2020.
In this modern age of post Mid Staffs, Shipman etc with social media and media coverage in general, if staff are still watching patients dying in distress because the NHS reporting systems don’t work, that’s a cop out.
If you’re part of a clinical setting where patients are suffering, stick your head above the parapet and start the changes that are so desperately needed.

Wouldn’t it be amazing if MN HQ decided to get behind a campaign to improve end of life care across ALL healthcare and community settings?

Personally I think there’s going to have to be an in-depth review and reform of how we treat people with no quality of life in old age.

Call me cynical, but I don’t think this will happen until Generation Rent hit retirement age and it is no longer the norm to have homes used to pay for the first few years of care.

My gran had dementia. Prior to this she was fiercely independent and the matriarch of our family. She lived with it for about 10yrs, she forgot us early on and quickly deteriorated. She became skin and bones and would sit in a chair and point at a painting and say ‘I’ve been there’. Over and over. I hadn’t had a conversation with her for years, no one had. It was utterly heartbreaking watching my highly opinionated gran become a shell, with no verbalisation, no memory. I wouldn’t want to live like that, so when she got Covid in May she became weaker and passed at the end of May. She’s at peace and it’s a relief.

@Retiremental

The usual scenario is a difference of opinion amongst staff members. Some people simply cannot see what the problem is. Poor care involves a subjective opinion.

The people who direct and conduct this care process are not highly educated - myself included - and many never address thoughts of higher concepts like moral or ethical question in nursing.

You have to know you're doing something wrong before you can address it.

"Hospices issue dire warning of closures as coronavirus sparks cutbacks in end of life care | ITV News" www.itv.com/news/2020-03-28/hospices-issue-dire-warning-of-closures-as-coronavirus-sparks-cutbacks-in-end-of-life-care

I certainly don't want my mother's life extended. I love her very much but she is in end-stage dementia and I know she would have hated it had she known what her life would be now. She expressed her wish NOT to have any life-prolonging treatments should she lose capacity so there's no way I would request them on her behalf.

However I have to agree with other pp who have said the tone of your original post lacks empathy and kindness. It sounds was though you have lost sight of the person and see only the dementia. I find that sad.

Shipman led to the chronic undersprescribing of opiates in terminal care and dosages have steadily decreased. GPs lack the confidence to prescribe these medications, so patients go without

That is so awful - his wickedness lives on.
Also someone told me that if a patient are prescribed opiates for many years then they develop a tolerance so normal doses won’t work.

Shipman led to the chronic undersprescribing of opiates in terminal care and dosages have steadily decreased. GPs lack the confidence to prescribe these medications, so patients go without

This is my experience with both parents. And in my dad it agitated him terribly. So there was absolutely nothing peaceful to see there.

Shipman led to the chronic undersprescribing of opiates in terminal care and dosages have steadily decreased. GPs lack the confidence to prescribe these medications, so patients go without

Yes also my experience. Even at literal end of life, on a syringe driver (which I had naively assumed was the green light to have as many drugs as you need), still the insistence of waiting 24 hours before upping the dosage. 24 hours in restless agony is a very long time indeed. And also agony to witness.

@Retiremental

Your attitude and blame of those trying to address the issues are part of the problem.
What do you do when you are constantly ignored and overruled by those 'better qualified' than you? By red tape and NOK wishes? By protocols and rules?
I've reported things to the NMC, to the CQC, but as a mere care assistant I'm generally patted on the head, thanked for my time and sent on my way.
I've been accused of just wanting an easy life when asking for something to settle an agitated resident. They are looking for things I cannot give, talking and hand stroking only goes so far in comforting someone who is crying out for a long lost loved one, or who believes they are a child and wants their mother to come, or who is non verbal and my knowledge of them as a person, of having known what they looked like when they could verbalise discomfort is ignored because the patient themselves can no longer say "It hurts" I can be trained in these things as much as you like, but unless someone actually listens to me when I use that training, unless someone values the job that I do and the knowledge I do have, it's pointless.
I accompanied a dementia patient to a&e once with a ? broken hip. Disorientated, in pain, frightened. They weren't cooperative with medical staff, the Doctor snapped at me to do something, what do you suppose I could do? I can't cure dementia, I can't suddenly make this person able to understand, I can't prescribe (or even administer in a hospital setting) the pain relief or sedation required to stop this resident trying to climb off the bed while they try to x-ray or examine. Short of physical restraint, there's no magic formula I have to make it work.

We're accused of wanting to chemical cosh people who are distressed and uncomfortable for an easy life. We're told we don't know what we're talking about. We're told by society we're not worth much, that we're to blame for the failings that start so far above us we don't have a concept of where.
What's a more scary thought is that society are quite willing to point the finger and demand change from us, and feel they've done their bit, and next week go on with their lives, without having the slightest concept that we are very limited in what we can actually change, that while ignoring us, they are compounding the problem.

@Retiremental you are attacking @daisycottage for reporting her experience on here. She reported them in real life and probably experienced more condemnation for doing so. You are giving a great demonstration of why people don’t report....because they get attacked personally

I’ve heard some lovely descriptions of end of life care but a denial of the realities.

With dementia there is a blurring of boundaries so ‘stages’ are hard to identify. Early dementia is NOTHING like advanced stage. The horror of hallucinations, failure to eat, drink, mobilise, enjoy anything (music therapy?), fight personal care, unable to indicate pain and a reluctance from HCP to give any medication to soothe those issues. They focus on antibiotics, delivering food to someone who is actively refusing it. Easy things that don’t tackle the individual’s pain.

I’m not advocating starving or not treating. I actually agree with @CherryPavlova description of EOL care but have to say it just doesn’t happen in dementia. My mum was EOL for 6 months. She stopped voluntarily eating and drinking 6 months before her death. She went 5 days with nothing. An attempt to offer everything to tempt her, nothing made her take a drop. She then had a yoghurt. Repeat this for 6 months. I watched the carers dribble fortified drinks in and then her cough or the stuff dribble straight out. I asked for medication to stop her mental distress...could we not give something to stop the screaming, anger, hallucinations? No and they looked at me like I was Shipman. I watched this suffering for 6 months. She died after two months of being separated in lockdown. The trauma I feel imaging those last two months knowing what the first 4 had been like are terrible.

Music therapy...yes we’d done all those in the previous 5 years of watching her die. Prior to this we’d had 3 years of gentle dementia. We’d read contented dementia, we’d done the training, we all worked hard to keep her at home, calm, contented, cared for. We cleaned shit off every item of furnishing, we took the punches and just deflected, diverted and cried at the distress she obviously felt. The HCP didn’t ever offer anything that helped. Nothing. Believe me we tried to get help. We were desperate.

The last 6 months decided me...I will take my own life before I risk experiencing this country’s care of dementia.

I can see @Retiremental and Pavlova mean well but they are like the professionals who poked their heads in and made impractical suggestions that didn’t match our experience and then left. I’m sure they felt better for offering their advice but it wasn’t delivered.

I was in an abusive relationship years ago and experienced gaslighting. Caring for someone with dementia is just like that except it’s HCP gaslighting you. Denying your lived experience and deflecting blame to you when you dare to speak up about the reality.

I also love carers @MoodieMare. I get all carer an individual gift at Christmas, have sent cakes, toiletries and gifts in during lockdown. I cannot express enough gratitude

[quote TooOldforBouncyCastles]**@Retiremental* you are attacking @daisycottage* for reporting her experience on here. She reported them in real life and probably experienced more condemnation for doing so. You are giving a great demonstration of why people don’t report....because they get attacked personally[/quote]
If you think I’m ‘attacking’ anyone then I suggest you report my posts to MN. They are pretty hot on deleting such posts.

They come over as an attack on @daisycottage yes. By claiming MN won’t delete you are trying to get validation for your posts. I will change the terminology and stand by my point that you tackling her does nothing to encourage reporting

You are tackling her personally rather than tackling the problem

There is a problem @Retiremental. Trying to shut @daisycottageup by pinning blame onto her, questioning why she hasn’t, reported, escalated etc is ignoring the issue that her experience is repeated across the country.

People give up reporting because nothing changes and they personally suffer for reporting.

Someone else said we are arguing over different issues here and I agree. I can see a common theme of people wishing to avoid suffering but misunderstandings of the level of dementia this might be a consideration and what that then looks like. There is also loads of anecdotes about how nothing was done to palliate.

@TooOldforBouncyCastles

They come over as an attack on *@daisycottage* yes. By claiming MN won’t delete you are trying to get validation for your posts. I will change the terminology and stand by my point that you tackling her does nothing to encourage reporting

You are tackling her personally rather than tackling the problem

I didn’t claim MN won’t delete me. But you know damn well that I wasn’t attacking anyone.

I think sometimes there can be family disagreements on this issue, and the ones that want to prolong life at any cost can often hold sway as they would feel more distressed and betrayed for having their wishes overlooked and having their loved one's death hastened than the relatives who think the kindest thing to do is not to treat.

This happened in my family. I was very clear my granny was suffering and had no quality of life with advanced dementia. Her days were spent in distress and she had made it very clear previously she would not want to live like that. She had frequently said, when she was actually pretty well, that she wished she could just have a big party and take a couple of pills and for that to be it.

But an aunt of mine was horrified at the thought of not treating infections with antibiotics; it caused her a huge amount of stress and she could not agree to it, and so the treatment continued until the doctors (after making suggestions for some time) gently appeared to take the decision away. At that point she was not really capable of swallowing anyway.

It's a very traumatic time for relatives.

@TooOldforBouncyCastles

There is a problem *@Retiremental. Trying to shut @daisycottageup* by pinning blame onto her, questioning why she hasn’t, reported, escalated etc is ignoring the issue that her experience is repeated across the country.

People give up reporting because nothing changes and they personally suffer for reporting.

That’s it sorted then. This is how it is. Nothing will ever change. So those of us who are pushing ahead every day for improved standards of care at end of life AND well before it just call it a day now? Throw in the towel?

Well that’s not going to happen. I and the likes of Cherry will continue to advocate and educate and collaborate and address the serious shortcomings and lack of knowledge amongst HCPs and support staff of gold standard dementia care. Others will advocate for voluntary euthanasia. Others will work on strategies for provision of centres of excellence for dementia care. Others will lobby for funding. Others will develop initiatives to encourage more people to look at the issues around advanced directives. And hopefully as a society, in years to come we won’t still be recounting the horrific stories that have gone before.

There are many, many excellent HCP’s working in multi disciplinary teams in many settings across the UK who are already providing excellent dementia care. I’m not ready to give up just yet.