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?

@Retiremental I don’t wish to get into an argument about this but I do think it’s important you see how your posts came across. They didn’t encourage reporting. They blamed the reporter for not resolving the issue.

You and @CherryPavlova obviously have huge passion for palliative care but don’t wish to hear the experiences of those of us who have suffered through lack of it and explore why.

My impression is that the palliative team cannot cope with long drawn out deaths like my mums. So they fall through the cracks and all the myriad reasons exposed on here lead to traumatic deaths.

E.g. lack of good communication, fear of professional misconduct, fear of condemnation for your stance, lack of understanding of how to manage failure to eat, drink, lack of understanding of what happens in reality

We are probably fighting for the same thing but blaming the wrong people

Can I just add to that list of wonderful people like you and cherry are thousands of relatives doing everything I described in my post. After my mums death we raised £3000 for Alzheimer’s society. A drop in the ocean. I worked tirelessly to make her last year’s comfortable. I’m distressed to be placed in the ‘bad’ group advocating voluntary euthanasia because I’ve said I’d rather we focused on comfort rather than prolonging life.

My efforts dismissed by you did more for my mum than any of those you describe. That’s why I’m so upset. Please don’t dismiss me

I listened to my mum relive a childhood sexual assault that I knew nothing about until her dementia forced her to relive it again and again and again...as her hallucinations got worse. Months of that. Can you imagine how she died? Can you understand my distress?

It’s probably worth mentioning that many of us have absolutely personally cared for a loved one with dementia as well as happening to have professional experience in this area. Our views matter too.,

@Retiremental it isn't a question of improve care or have euthanasia. My relative has excellent care but she has no enjoyment no pleasure, her last pleasure was food and that has gone now. She has little men in the loft tormenting her, she has spiders all over the walls, well I assume they are what is distressing her but she can't tell me now. I don't want euthanasia, I want her to continue with the excellent care she gets but I don't want treatments to make her suffering go on. I don't want her neglected but I can't see the point in giving her fortified drinks to keep her going when she doesn't want to eat or drink. It isn't kind, it isn't noble, letting nature take it's course isn't an insult to carers. If she hadn't had loads of antibiotics, if people hadn't sat with her for hours encouraging her to eat and drink she would have died some time ago. If she is given enough anti psychotics to stop the hallucinations she just sleeps and when she wakes she is fed medicated and sleeps again. No one is negligent, no one is deliberately cruel but forcing her to go on past when it should have been over is cruel.

I haven’t dismissed you TooOld.
And I’m sorry about your mum. This has been a very difficult thread.

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?

No we don't. We join forces. You stop blaming the people who are trying to get change to happen from the inside like me, like @daisycottage. We do report, we do flag things up, we do what we can, but if our concerns are ignored repeatedly by those who we are reporting to, we need more support to be listened to, not blame because we're not listened to.
You stop dismissing our experience and support instead. You understand that when we are constantly ignored and overruled, then blamed, that we're human and we have been fatigued by this happening, that we feel like we're banging our heads against a brick wall then blamed for building it.
As @TooOldforBouncyCastles says, it would appear we're all wanting the same thing here, dignity, respect and for people to be free from pain and suffering.

While you continue to dismiss us like this, blame us, you are confirming that we don't have anything worthwhile to contribute to this discussion.

And you wonder why some don't report or leave the profession all together?

@Retiremental yes a difficult thread to read. It’s been a difficult experience to have lived.

I think equating giving fortified drinks to dementia patients as palliative care and equating only offering rather than trickling it in when their mouths are open as withdrawing or depriving is one issue.

We continually offered but I found fortified drinks a bit pointless. Surely it’s about comfort, about taste, moisture in the mouth and flavour not feeding someone to keep them alive longer? Yes by all means if someone’s experienced temporary loss of appetite but not when they have stopped eating as part of dying.

It is about comfort yes, and not giving antibiotics doesn't help with comfort in some cases. Or do those ones not count?

The reluctance to provide any medication to soothe her mental distress in case it hastened her death in any way was utterly utterly cruel. I will probably not get over listening to her relive her assault.

It came out whilst she’s sat on the toilet and I’m hovering to wipe her bottom and reposition her pad. She starts crying and then reliving it, saying dont do it, don’t do it...mummy, mummy help me... along with other details which I won’t go into. I then wiped bottom, pulled her pants up etc and left in shock. This became a regular memory for her. I hid it from family as why should others know this horrible truth. But we are hiding the reality too often.

@chickenyhead I think antibiotics should be given based on purpose e.g. alleviate suffering but perhaps if there isn’t another way of doing so.

Death is inevitable. We can only delay for so long. I don’t want it hastened but nor do I want it delayed when my I’m not going to recover and I’m suffering.

So many unique situations that all need individual decisions.

Exactly and what is clear from all of our experiences is that one size doesn't fit all and the current management of end of life is inadequate in many cases.

My aunt had medical power for my grandmother. She kept authorizing treatment after treatment. My mother considered challenging it legally, but it would have been such a family rift. We had to accept that my grandmother who placed so much value on being polite and proper and was now nothing like herself, chose my aunt. Even though we think grandma would not have wanted the path aunt chose, we had to go with it.

We were sad when grandma finally died, but also incredibly relieved.

We continually offered but I found fortified drinks a bit pointless. Surely it’s about comfort, about taste, moisture in the mouth and flavour not feeding someone to keep them alive longer? Yes by all means if someone’s experienced temporary loss of appetite but not when they have stopped eating as part of dying.

I've tasted these drinks, along with the 'shots' of high calorie liquid. They're not pleasant. Not appealing. When someone is refusing their favourite foods, things they've eaten reliably, then these are not a palatable alternative, they leave a horrible film in your mouth.
Pretty much anything at the end stages of someone's life is exhausting, including eating and drinking, should we be insistent that someone uses that bit of energy to take something unpalatable because it will keep the body going a little longer?
I'm not advocating starving people to death, I'm advocating listening when people turn away from food and drinks, use oral care sponges and sprays to stop the mouth drying out and lips cracking. Offering, but accepting when the answer is no, be that verbally or by body language.

I do feel food is different at that stage, as long as the patient is comfortable and not in pain.

I agree with you OP, I’m a HCP and have had to take part in a physically holding a 90 year old demented patient down who was continually shouting “No! Let me go” while we pumped sedatives into her and forced her to have a pacemaker inserted because her family insisted it was in her best interests. I think sometimes we treat for treatments sake rather than to actually help someone.

[quote TooOldforBouncyCastles]@Retiremental I don’t wish to get into an argument about this but I do think it’s important you see how your posts came across. They didn’t encourage reporting. They blamed the reporter for not resolving the issue.

You and @CherryPavlova obviously have huge passion for palliative care but don’t wish to hear the experiences of those of us who have suffered through lack of it and explore why.

My impression is that the palliative team cannot cope with long drawn out deaths like my mums. So they fall through the cracks and all the myriad reasons exposed on here lead to traumatic deaths.

E.g. lack of good communication, fear of professional misconduct, fear of condemnation for your stance, lack of understanding of how to manage failure to eat, drink, lack of understanding of what happens in reality[/quote]
I do have a very good understanding of palliative medicine. That doesn’t rule out personal experiences. You assume too much because of your personal experience.

My mother is 96. She lived fully independently until she had a major CVA eighteen months a ago. She was bling and almost deaf but managed. Sadly one night she collapsed. She received excellent care in hospital but it was clear she was approaching her final days. She was discharged to a specialist nursing home for end of life care, with six weeks funding.
She has lingered with advanced dementia as a result of the stroke. She weighs about four stone and is nearly cut off from the world. She mainly curls into a ball like a fallen fledgling sparrow. Sometimes if she is frightened or surprised, she fights and spits. She drifts in and out of consciousness.
We are fortunate the home is very good. Her GP is very good. She has appropriate anticipatory medication. She has good symptom control. The staff understand behavioural triggers and are mindful to avoid them, where possible. They use music to good effect. Gentle songs that she might remember in the remaining archive of her brain function.

Those of you doubting the power f music in the management of dementia, please watch this;
metro.co.uk/video/prima-ballerina-alzheimers-remembers-routine-swan-lake-2288344/

The answer is not to turn to murder, but to ensure we fund and provide excellent services for all as they approach the last stage of life.

She was never bling. She is blind.

@Elsiebear90

I agree with you OP, I’m a HCP and have had to take part in a physically holding a 90 year old demented patient down who was continually shouting “No! Let me go” while we pumped sedatives into her and forced her to have a pacemaker inserted because her family insisted it was in her best interests. I think sometimes we treat for treatments sake rather than to actually help someone.

That’s a failing of an individual doctor and sounds that you should have made a safeguarding referral rather than assist in abuse. A family cannot insist on medical treatment. A patient cannot insist on treatment that isn’t offered. Consent is about permitting or refusing treatments that have been offered. Why would any HCP risk their registration by participating in this type of situation?

My mum died last year. As a hcp with the dying you will often only see them at their worst. Right until the end my mum knew who I was and was comforted by me being there with her. She also didn't want to die. But she was very frail for a very long time and we had a dnr in place for 2 years. I still got the hospital to treat for the many times she had aspirated pneumonia and had an extra year with her and some lovely memories.

I wouldn't have allowed them to perform cpr but I didn't think just allowing her to die when she had something that was fixable was right either. Life is precious.

I have read the first page and all of your posts op. I also had a beloved grandmother who died from Alzheimer's and certainly would like help from dignitas of it happens to me and before I lose my faculties.

However the lack of empathy in your posts concerns me: the references to "them" "the ones" etc., and the lack of cognizance that the relatives cared. In fact more than cared the people to whom you so casually refer were mothers and fathers and those making decisions for them sons and daughters. Relationships based in love where objectivity simply cannot prevail.

My grannie's temperament changed at about 70.
Shortly she was repeating herself.
By 75 very forgetful and unable to take care of herself bit others did and loved her.
By 80 she was having respite care two weeks in seven for grandad's sake and mother's too.
She was admitted to a geriatric mental health unit (golly the family had to fight for it)
At first she could walk and sip tea.
The last few years my mother and grandad fed her and gave her a sippy cup. The TIA's became more frequent and took their toll.
By the end when she was 85 she couldn't eat, drink and was doubly incontinent. She was visited every day and had her hand held every day. She was buried on my grandparents 65th wedding anniversary. I threw earth upon her grave carrying in my arms a small blonde baby girl who shared her name and has grown up the spitting image of her with all her courage and bright wit and who at 22 grabs a bridle just as she did, is as quiet and yet so resolute.

You see op, she had loved and in return was loved so very much and that you don't seem to understand. She was physically as fit as a fiddle at the start of this journey so it was a very long, 15 year one. You see you see the empty vessel at the end but the family sees the bounteous ship that set sail decades before and the bonds are greater than you appear capable of imagining.

My grannie was blonde, blue eyed and twinkly - and v petite but very strong. She ran a working farm in the war, managing pows and land army girls. She was a fabulous horsewoman and breeder and trainer of horses. She did not deserve her last 15 years or the ills Alzheimer's wrought on her or her family. But it's about love you see. And faith. And where there is faith decisions about life do not belong to husbands, wives, lovers, sons or daughters and neither do they belong to HCPs. They belong to God and when he is ready for them they will be collected and guided towards their final resting place.

In hope you may be able to appreciate why your first post made me really quite upset.

@Elsiebear90

I agree with you OP, I’m a HCP and have had to take part in a physically holding a 90 year old demented patient down who was continually shouting “No! Let me go” while we pumped sedatives into her and forced her to have a pacemaker inserted because her family insisted it was in her best interests. I think sometimes we treat for treatments sake rather than to actually help someone.

I have no words.

My gran really really suffered.

She had vascular dementia and was allowed to stay at her house. She didn't know who anyone was. She fell and was taken to hospital where she caught a chest infection and it killed her, very slowly. It was awful.

She was on antibiotics, fluids, pain meds. I wanted her to be in no pain and didn't want her to suffer but my god she did because my mum wouldn't let her go peacefully. She was to receive CPR. I really felt for my gran.