Alzheimer’s is a dreadful disease

[AtlasPine]

My mum. Nothing else really. I’m too tired.

Can I ask a question? This is one of my biggest fears of old age. Are the people who have it on any meds which could be withdrawn and bring about death more quickly? Is that allowed? Eg heart medication? Or are most people physically healthy?

I have a family member who may be developing dementia. They’re not on any medication though so I’m not thinking it for them. I’m just thinking it for me in the future if it happens.

@WoeBeCome it varies. Most people eventually get to a stage where the goal of treatment is comfort only, not trying to cure. (I personally feel this goal should be settled on much earlier than it usually is- the NICE gold standard for dementia is to take a palliative approach to treatment from diagnosis - that doesn't mean you give up or don't treat, it means that quality of life and symptoms control are the goals).

But comfort doesn't mean death. What if heart meds make a person much less breathless, or make their legs less swollen so they can move around more? If a UTI makes you uncomfortable and terrified, should you have antibiotics? Its never simple.

🤍

Well said @NeverTrustAPoliceman .
As a country we do need to have a discussion about how we keep our old people alive.
I looked after my mum with dementia for six years and to be honest all I felt when she died was relief. Sorry I know that sounds awful but I would hate to put my kids through that.

Alzheimers really is awful but catching signs & symptoms early can really help and getting early assessment. A family member has had a really positive experience with Recognition Health who offer memory assessment and clinical triao opportunities, whether you are diagnosed or simply worried.

Yes I was quite surprised that one of the common symptoms for example is weight loss, I wouldn't have ever made that connection.

Thanks, thats useful to know. I hadn’t thought about it like that.

Yep. Lost my mum (not in body sadly) 10 years ago.

It's shit

@Daleksatemyshed yes I had that experience with my dad too . It was awful for him and no way was I suggesting that dementia was anything but awful . It's just that I could see, with my mum, so many ways that, even though she wasn't the person she was, and not able to enjoy things she did previously , that there was some quality of life there, I could see that she was content, and I find people suggesting that her life was worth nothing to be extremely upsetting .

Anyway to anyone who is going through this with their own family members.

@Fairyliz It doesn’t sound awful, it sounds compassionate and realistic. I am sorry for what you went through.

@ShinyAppleDreamingOfTheSea , yes, but what about the ones who are almost permanently fretful, confused, anxious about things they can not even name? What about the poor 80-odd woman in my mother’s care home, so often crying that her mother didn’t know where she was, and would be so worried? The staff were very kind, but nothing could comfort her.

My DM was in her care home from 89 until she finally died at 97, having had Alzheimer’s since her early 80s, so for around 15 years. For the last 4 or 5 she was doubly incontinent, incapable of any sort of conversation, no clue about anything, not knowing any of her family - and no, not enjoying life at all. I can’t say she was ever happy in her care home, excellent though it was.

During all those 8 years of visits there was only ever one resident who appeared to me to be genuinely happy all the time - every time I saw her she told me happily that her mum and dad and grandma and granddad were coming soon, and they were all going to see seaside together.

How I wished that my poor mother could be permanently back in some sunlit childhood idyll!

When she finally died, all we could feel was relief that she was finally released from such a cruel and undignified existence - one that would have appalled her former, intensely private self.

The majority of doctors have certainly worked this out. However they must work within the legalities if this country.

The medical profession are only too aware of the reality of dementia. But they have to work within what is legal in this country. They are not gaslighting and minimising. They cannot break the law either.

@Lapland123 totally agree. Doctors aren’t allowed to actively end life no matter how much you beg - and believe me I begged 😢😢.

@WoeBeCome , what dh and I have done (after so many years of dementia in both my DM and my FiL) is to add a paragraph to our Health and Welfare Powers of Attorney to state basically -

‘If I should develop dementia, or any other condition where I am unable both to care for myself, and to speak - with full mental capacity - for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

We trust that dds who will have P of A will adhere to our wishes - they already know how we feel.

Thanks for that. That’s good you’ve done it early. My kids are only small so we’re a way off it yet. The whole thing just sounds so awful for people. It must be heartbreaking.

My mum would frequently be sent to hospital from the care home because she wouldn't eat or drink. They would put her on a drip and she would 'recover' and be sent back. In the end after discussion with her (lovely) consultant we decided to stop this and let nature take its course. They can't do any more than this to end a life. Even legal euthanasia like Dignitas would probably not be applicable as she was unable to consent.

My Dad did not live well with Alzheimers. At all. Constantly distressed, looking for my brother and I even when we were with him, no recognition at all. Asking when his mum and dad were coming. Over and over and over again, day after day after day. It was dreadful. I just wanted it all to end.

I had a friend who sniffily said, well a least your still have your Dad. I didn't have my Dad. I had this 90 year old anxious person who started getting into fights FFS. My poor mild mannered Dad. He actually attacked at knocked out one of the carers when we finally admitted defeat and placed him in care. When I saw her bruised face I collapsed. He was sectioned twice.

He had several chest infections and the home kept sending him to hospital for IV anti-biotics when I just wanted nature to take its course. For his sake and for ours.

When I got the call to say that he had died in his sleep I wept. I wept in relief and he and we no longer had to live with this. It was nearly 13 years.

DH and I were both left traumatised and have agreed that if either of us go the same way we will place the other in the best care available with no guilt. Trying to do this at home is not sustainable.

For anyone going through this at the moment I send all love and sympathy. It's hell.

@Lapland123 I do appeciate that Drs can't just kill people off no matter how bad their circumstances. The problem is that you find yourself being the person whose asked to make decisions for your parent but they can't give you any real options, they will treat them when you know that's not what they would want. Every time my DM went to hospital with yet another UTI she came hope more lost and confused than before.
I don't have an answer, I wish I did.

If I should develop dementia, or any other condition where I am unable both to care for myself, and to speak - with full mental capacity - for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

Dh & I have done that as well but people can live with dementia for ages without needing life prolonging treatment. The prospect is terrifying - I’d like to have one of those cyanide capsules that Nazi war criminals had.

There definitely are options for doctors @Lapland123. It has taken 18 months - I'll say that again, eighteen months - since my mother's severe brain bleed aged 86, to get PRN antibiotics crossed off her drug chart. She has been to hospital once and nearly a second time - I literally had to scream and cry down the phone to stop the care home sending her again.

I can often see in the notes that the families are trying their very best to say 'enough is enough' to the doctors, but the juniors in particular apoear too afraid to listen. In this Daily Mail ridden country I don't entirely blame them but when doctors come across a family that us more blunt about wanting true comfort care only for very comprehensible reasons, even if there are short term reversible issues going on, they should listen properly. Squeezing a few more weeks of existence out of someone who has lost most things that made them themselves years ago, should never be the goal. And yet we know it too often is - hospital doctors all act much too short term. Maybe one day things will change.

Doctors make decisions based on the organisation they work within. I have zero doubts that many if they were able to make clinically balanced decisions that took into account family preferences as well as the dignity and quality of life of the patient would do so- but they can't without risking their registration and goodness knows what else. It's something the NHS needs to look into imo.

@CaptainMyCaptain , I had an aunt (mid 80s and with dementia) who was refusing food and drink after the umpteenth UTI. The (lovely) care home rang and asked whether we wanted her taken to hospital for drips, etc., or left where she was, basically to die. All other relations were away - I could only ask to speak to the GP and ask what he’d do if it were his much loved aunt.

He was lovely, and said he’d leave her where she was, where they’d keep her comfortable. She was prone to UTIs anyway, so it was only going to happen again, probably quite soon.

She took about a week to drift away, asleep much of the time, still refusing food and drink - I sat with her a lot.

It was a horrible decision at the time but I never regretted it afterwards - I know it’s what her former self would have wanted. Not to mention that hospital is in any case a terrible place for anyone with dementia, when they can’t understand what is going on or why.

Yes, @PermanentTemporary , but I’ve heard of several cases where the family insist on ‘striving to keep alive’, because, ‘I can’t bear to let Mum go!’ etc., regardless,of quality of life.

I heard of one case where someone of over 90, with already fairly advanced dementia, was given a pacemaker at the family’s insistence - even though they’d asked what would happen if they didn’t have it, and were told that they’d most likely drift off quite peacefully in their sleep.

So I don’t think it’s necessarily fair to blame the doctors.

My mother had been a nurse when she was young. When she was in hospital with dementia she kept getting out of bed because she thought she was supposed to be at work and the nurses kept getting annoyed. I explained to them why she was doing it and they understood but didn't help them much when they were rushed off their feet. I agree hospital is not the place for people with dementia which was made doubly difficult during covid. My mum first hospitalised about 14 years ago I hope the nurses have had more appropriate training since then but during that time a specialist unit has opened and then closed again.