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?

Yes I’m sure there are other reasons why covid is not an ideal way to go but I hand am hand on heart telling the truth. I love my parents to pieces and they are only in there 70’s and in good health but I don’t wish eternal life upon them. If either were to pass, even now, I would try and accept it with grace. They have brought up their children, been a big part of their grandchildren’s lives. I’m in my 40’s now so as sad as it would be, life would go in. Death is inevitable. As a Mother/ parent , the eternal fear is that you won’t make it that far. They have and for that, they are lucky.
But there’s nothing lucky about living so long that you slide into terrible health. I just think it’s something that should be discussed more in families.
My nan got dementia for last two years. She was 94. She had a prescription as long as your arm by that point. She’d also spent the last 10 years of her life sitting in a chair on her own. Does my Mum want that life? No. So if she gets cancer/ heart problems etc. at 79 will we treat it? No. That’s our choice

Retiremental- no, I’m saying that MY parents will not be taking those drugs. You do what you want with your parents.

@Newdonewhugh

Retiremental- no, I’m saying that MY parents will not be taking those drugs. You do what you want with your parents.

So you’d try and stop your parents from having benzodiazepines and night sedation if those were required to manage any distress or agitation associated with dementia? You’d stop them from taking drugs to prevent a life threatening cardiac arrhythmia in the early stages of dementia? You’d refuse to let them take medications to manage the complications of diabetes? You’d refuse to let your father take medications to manage the symptoms of urinary frequency that trouble so many ageing men? You’d prefer your parent to have disturbed and restless sleep rather than use night sedation? No pain relief for chronic pain?

It’s an interesting viewpoint. But too simplistic. A starting point though to do some more research and thinking about issues which may arise in the future.

My grandad died 15 years ago primarily dementia aswell as congestive heart failure, there wasn’t much around back then to offer up. I wish we had more options

My mother had dementia. She lost the ability to swallow. It was heart-breaking seeing her, with a kidney infection, desperately thirsty, but unable to take a drink without choking. I was asked to make a decision about her treatments. I decided against IV and treatment once it was explained that it was likely to lead to sepsis. She fell unconscious and slipped away. I have never told my family that I actively chose that option. They were not there, and I believe it was the right thing to do.

I don’t agree with Cherry and am annoyed that she has brought up bloody Shipman as an argument when this thread is specifically about Dementia, not a psycho murdering healthy older people who had full and active lives, because he was a sick bastard who wanted control. Its so far from people’s experience it’s irrelevant. There are some awful shocking stories of how dementia has ruined the last years of lives and wrecked families. I for one do not want to live out my final years bed bound, incontinent, force fed and distressed while my family has to watch and be made to feel guilty.

Does my Mum want that life? No. So if she gets cancer/ heart problems etc. at 79 will we treat it? No. That’s our choice

At 79? Plenty of people of 79 are fully compos mantis and able to enjoy life even with cancer or heart problems. One of the most energetic, dynamic women I know is 83.

I agree. 2 of my grandparents suffered terrible dementia for years. They both got to the point they were mute, incontinent, unable to eat solids (couldn't put false teeth in), couldn't walk. It was awful to watch them basically just rit away like that. When they put my gran on to palliative care, they thought she would die within a day or 2. She lasted 9 days. I remember just wishing she would let go. Imo they were kept alive too long. They had no quality of life at all.

I totally agree with you OP but it's way to simplistic to just blame the families. About your post upthread about ct heads for example. Who is ordering these ct heads? Doctors. Doctors are ordering tests and procedures that the families don't want, or don't understand that they can refuse.

I'm a ct radiographer and I can tell you I hear daily from families "why is this being done, we don't want this, but the doctor wants it". They think they aren't allowed to refuse, or that it must be helpful because a doctor said so. Meanwhile the doctor has only ordered the test because of a perception that is what the family might want. Even if they have said they don't want it, the doctor is worried they could change their opinion later and complain.

The nursing home is under the exact same "covering arse" protocols as you, so that is why they keep calling ambulances.

I am not critisizing doctors at all and I understand their perspective, but you must see the issue. I don't know what the solution is.

You are right OP this thread is upsetting and I wonder whether you work at CUHT.

I watched my sister die at 50 from a brain tumor. She was unconscious for the last 2 weeks and I watched daily as her catheter bag filled with dark black fluid and her muscles wasted away whilst her heart continued beating.

Her GP advised my parents, who were distraught at the idea that they hadn't helped her, (by ensuring that she was on IV fluids), that she was going to die anyway, so no need to prolong it.

However, the GMC guidance clearly states that IV fluids should be given in these circumstances. They weren't and I watched her rot, whilst still alive. Yes, she was going to die, but her family didn't have to have these memories.

Then there is my Dad, he died a few weeks ago. He was in hospital, he was on antibiotics, dexamethasone and various other meds for breathing difficulties he has had for 20 years. We had been asking for him to be assessed for dementia for years now as he has beenso aggressive. He was so disruptive in the hospital, demanding to go home at 1am and pulling out his tubes that they tranquilised him to keep him still.

They said, not witnessed by anyone in my family, that he refused further treatment. No dementia check done, just the word of an annoyingold man. He went in to hospital walking and talking, he came out like a bruise covered zombie with a temperature of 40.9.

They stopped all of his medication blunt. Didn't provide a hospital bed, so he kept falling out and trying to crawl accross the floor in the night. We had to physically drag him back. The doctor refused to come out, he died after 4 days in a really horrible way.

But yes, he was going to die anyway. I just don't think the family needed these memories.

So yes, I guess your manner on this thread is quite common in medical professionals doing end of life care in my family. It isnt something to pride yourself on.

I worked in care homes on nights for years. I saw lovely people who had come to the end of their life, and they knew it was time to go. It would begin with them not wanting to eat or get out of bed. The signs were all there. They would say they were tired. I saw ladies go from perfectly healthy and happy individuals end up like skeletons on a bed being made as comfortable as was possible while they waited to die.
These were people who did not have dementia and to me it was a horrible and undignified way to die, but what was the alternative ? answer - none.
We don't treat our pets like this so why do we allow our mum/dad/grandparent to go in such an awful way? I do not understand why when there is no way they will get better, that something could not be done for them to end the agony. They literally starve to death.

You assume you will live to a 'ripe old age' and die in your sleep.
I'm in my 60s now and have a family member in a care home with dementia aged 73. They're going downhill fast , in a wheelchair now. I would like to think I would commit suicide if diagnosed with dementia or Alzheimer's but that doesn't seem to happen very often?. I expect that you hang on to the hope that your illness will progress v slowly. Orby the time it is diagnosed are you unable to make the decision?
One thing that happens when people move to care homes is that their GP becomes the one the care home uses or at any rate not particularly the one you have used for years. It feels like the GPS are glad to get them off their books). But imv the family GP should visit them in the care home at least initially as they know the patient and could note any sudden weight loss or change in their behaviour( not just due to their condition) and note it and/ or change medications. And might know the patient's wishes and attitude to resuscitation. Or it might be something GPS could encourage people to consider and suggest they put in writing.
My DM did not want to sign the dnr form, she was 89 - the thought of her frail body being resuscitated was not good. She'd been a nurse and had worked in a care home! My aunt who'd been a nurse all her life finally was admitted to hospital from her own home aged 90 but refused food and water and died in a week or so.
I feel that assuming someone will care for you 24/7 should you become senile and incontinent and this care might last years is quite an inconsiderate assumption even if you have the money to pay for it. We should plan a better end to our lives.

Not everyone goes to a care home in the same area that their GP covers though.

Yes, this is true.

My Aunty has advanced Alzheimer's.
She's about 10 years in and has no life whatsoever.

She's also been in heart failure for years and has no medication whatsoever for any of her conditions but is still with us.
She even dodged Covid when all the patients on her wing died of it a few months ago!

Dreadful disease and horrible to see her just existing.

Are there recognised, defined stages to Alzheimer's, like with cancer (stage 3,4)? If so that might make it easier for someone to say I would want treatment up to the equivalent of stage 4 but after that please just make me comfortable. Otherwise it's all rather murky. If it was my loved one, or me, I wouldn't want to go straight to refusing life-prolonging treatment until it got to a stage where their/my quality of life was completely gone. I think there's still something to live for up until the point where someone has just become a shell of themselves. I think it would be helpful to be able to make decisions along those lines but I'm not sure if that's possible?

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.

Yes, but that is all about what is best for the family, not the sufferer. Which is the opposite of compassion, if you think about it. If someone is going through a living nightmare, which is what advanced dementia is for many, then to wish that prolonged for even an hour so you can get your big funeral is pretty cruel. When someone is living in permanent fear and distress, anyone who really cared about them would want nothing but an end to that suffering as early as possible. It is irrelevant to many advanced dementia sufferer who is around them - the person they were has gone, only fear and confusion remain.

@SinisterBumFacedCat

I don’t agree with Cherry and am annoyed that she has brought up bloody Shipman as an argument when this thread is specifically about Dementia, not a psycho murdering healthy older people who had full and active lives, because he was a sick bastard who wanted control. Its so far from people’s experience it’s irrelevant. There are some awful shocking stories of how dementia has ruined the last years of lives and wrecked families. I for one do not want to live out my final years bed bound, incontinent, force fed and distressed while my family has to watch and be made to feel guilty.

I’m sorry you feel that way. Shipman is relevant as a doctor who felt justified in killing. He was imprisoned for the murder of fifteen women. Some terminally ill and elderly. The point is killing someone is murder. It is not for doctors to judge the quality of life - the likely benefits of treatment, yes, but quality of life no. Killing people, regardless of their perceived quality of life remains murder.

If we say it’s a kindness, where does it end? How do we judge the quality of life for a child with very complex disabilities? Do we ‘help them’ too. What level of disability do we think negates and quality of life?

@RosyPickle

Are there recognised, defined stages to Alzheimer's, like with cancer (stage 3,4)? If so that might make it easier for someone to say I would want treatment up to the equivalent of stage 4 but after that please just make me comfortable. Otherwise it's all rather murky. If it was my loved one, or me, I wouldn't want to go straight to refusing life-prolonging treatment until it got to a stage where their/my quality of life was completely gone. I think there's still something to live for up until the point where someone has just become a shell of themselves. I think it would be helpful to be able to make decisions along those lines but I'm not sure if that's possible?

Interesting. That’s exactly what having countries where assisted suicide is legal. People choose to die when still in early stages of the disease rather than allow the risk of progression when they cannot choose any longer.

There are, for balance, many people living with dementia who are very well cared for and living really quite happy lives. Dementia care is advancing rapidly. It’s awful watching distress but often that distressed behaviour is a response to external triggers and far worse in unfamiliar settings such as acute hospitals. Often the sadness is with the person’s family and not the person.

Sadly pain is often poorly recognised and managed in people living with dementia and that exacerbates symptoms. Instead of pushing for euthanasia push for proper symptoms control with regular analgesia. Makes a huge difference to how they interact with the world. Similarly sedative drugs are often used as a cosh, a form of restraint and cause distressing side effects and enhanced confusion. Push instead for adequate staffing levels, music therapy, personalised care, calm environments and expert assessment of their needs. Involve the Admiral nurses. Involve the SPCT.

My nan has dementia and is a home aside from the dementia she is in fantastic health at the grand age of 86.

She has settled well and made a friend, but sadly over lockdown she has lost the association between us and her family- ie she will talk about me to me, but she doesn't think I am me. She is happy at the moment she thinks she is on holiday.

If she gets ill now say COVID- despite the fact she is settled, we should according to this post refuse all treatment and let her die?

At what point is the cut off?

I get it, at some point my nan will become someone just existing in her own body, suffering, and at that point it will be a kindness.

This year has been hard enough for families with a loved one with dementia- many of us will have lost the last precious few months of being able to talk and share experiences with that person. Some of us haven't been able to see our loved one since March. Nearly 8 lost months.

My nan looks at me now and asks who that lady is and if she can go and see her friends- your post is insensitive, and frankly a bit unnecessary, each person is an individual and each family is different, there are many different reasons that people might choose to not let a family member go, and I don't think you should be sitting in high judgement over others, for the hardest decisions many of us will ever have to make.

Push instead for adequate staffing levels, music therapy, personalised care, calm environments and expert assessment of their needs. Involve the Admiral nurses. Involve the SPCT.

If you think music therpay would help my family member you are having a laugh. I actually find posts like yours really offensive. Do you have any experience of someone with Alzheimers, vascular dementia, Korsakoffs and alcohol related CI? Yup, you can have have the lot and have nothing left but terror and aggression and still be physically alive. It is living, barely existing, hell. Music therapy? You clearly haven't a clue.

@Anordinarymum

I worked in care homes on nights for years. I saw lovely people who had come to the end of their life, and they knew it was time to go. It would begin with them not wanting to eat or get out of bed. The signs were all there. They would say they were tired. I saw ladies go from perfectly healthy and happy individuals end up like skeletons on a bed being made as comfortable as was possible while they waited to die. These were people who did not have dementia and to me it was a horrible and undignified way to die, but what was the alternative ? answer - none. We don't treat our pets like this so why do we allow our mum/dad/grandparent to go in such an awful way? I do not understand why when there is no way they will get better, that something could not be done for them to end the agony. They literally starve to death.

You sound very kind.

That bit about starving to death isn’t entirely accurate and certainly isn’t undignified, if well managed. Starving is when you want food. In the last days and hours, as death approaches, the body has less need of food and drink and people do usually stop eating and drinking and start becoming sleepy. That’s the normal dying process and forcing food and drink onto people at this stage would be as unkind as withholding fluid or food from the same person a few days earlier.

It is about recognition of approaching death and an appropriate response. That bit about being kept comfortable is key. It isn’t undignified, it is dying. If handled well, it gives families time to say goodbye, time to really cosset and protect that person from unwarranted intervention. It sounds like your work does good end of life care. It’s easier to accept when you know what you are doing is providing the very best care as someone’s body gently shuts down.

I get it, at some point my nan will become someone just existing in her own body, suffering, and at that point it will be a kindness.

That is the point of the OP and the diffricult subject she was raising. This thread is not about people like your nan, who still have some quality of life. You haven't experienced really advanced dementia yet. Your nan is elderly and I hope it won't happen for her and she will go peacefully before then. The OP is for people who have not been that fortunate.

@HeadNorth

Push instead for adequate staffing levels, music therapy, personalised care, calm environments and expert assessment of their needs. Involve the Admiral nurses. Involve the SPCT.

If you think music therpay would help my family member you are having a laugh. I actually find posts like yours really offensive. Do you have any experience of someone with Alzheimers, vascular dementia, Korsakoffs and alcohol related CI? Yup, you can have have the lot and have nothing left but terror and aggression and still be physically alive. It is living, barely existing, hell. Music therapy? You clearly haven't a clue.

Actually I have a lot of experience. I talk from a population perspective rather than commenting on individual care. I’ve seen the impact of music on many. Visit the Wishing Well website. Fantastic work. It won’t work for all. It won’t reach everyone but music can and does transform the lives of many.

Music on its own isn’t the answer though - it requires a full package of personalised care from a multidisciplinary team. It requires adequate staffing levels and appropriate environments. Still some people will need other measures but not murder.

Not everyone goes to a care home in the same area that their GP covers though. I've never met my GP. I never see the same doctor twice and don't happen to have seen the doctor who is officially my GP. Actually I don't think any doctor at our local surgery would know me from Adam, or should that be Eve? I've been registered with them for nearly 25 years.