I dream that they will die and I feel bad

[realdeal7393]

I have a DM and DMIL in care homes. Before this, we’ve had ten plus years of crisis upon crisis, trauma after trauma.

Last week was another horrendous shit show of a week. I’ve realised that I’ve been waiting for a ‘stable period’ for over a decade.it never ever comes. By stable I mean no urgent, sickening, traumatic, distressing event happening for about 3 months. It’s NEVER gone more than a month without some heart stopping hideous shit show to sort out. They both have zero quality of life. They have suffered for years and years and years.

This morning I woke up to the realisation that I’ve been hoping they both die. I even walked into the fields and looked up at the sky with tears streaming down my face and begged the universe to release them.

I longed for my mother’s death every day for almost five years. I think it is normal. I loved her. What she lived was miserable.

Doctors absolutely do not have to give all life extending medications. In fact, if they give treatment either against the wishes of, or against the best interests of their patient, they are in the wrong. It is always a judgement call of course.

You can advocate against medicating your parents. It’s ok to be tough and hard on their behalf. It’s just not easy. I wish they made it easier. I had literal shouting matches with some care staff and one GP - thank goodness the practice at her last care home were excellent and we had good conversations (I don’t mean they agreed with everything I said but they treated us as my mum’s advocates). I lost my filter fairly quickly (not quickly enough). I learned to be blunt and a pain.

I'm so sorry. Been through it. They're put in care homes without your consent, and then you get 3am phone calls from the ambulance service. And they're made to suffer over and over.
And our pets get to live with us, and gently put to sleep when they're in pain. If someone said we should put out pets in institutions when they get old, and let them scream in mental and physical anguish, they'd get called evil.
I did all I could to get my human loved ones out, but short of risking prison, and that would mean my kids losing their mum, what else could I do?

You don’t need to feel bad about this.

I remember my MIL confided in me that she wanted her own mum to die. She’d been in a barely conscious, unable to eat solid food, blind, deaf, mentally gone state for 15 years. I told my MIL that she was reasonable and not to feel bad.

I worshipped my mum and I wanted her to die at the end. She had horrible cancer that was causing monstrous suffering (home, hospital, hospice). When my MIL was in hospital (well back and forth from hospital and home) suffering also with end stage cancer, I wanted her to die as well. In both cases, my mum and mil were very good people and they needed to die to release them from their suffering.

I had to call 14 ambulances for my DSF towards the end of his life. He had no quality of life.

We have a major societal problem when people get old. The care and stress that fall on stressed, busy and broken family members is appalling. The damage that caring for DM, PILS and SF has done to my health is significant.

Actually it is a British Medical Association rule
https://www.gmc-uk.org/professional-standards/the-professional-standards/treatment-and-care-towards-the-end-of-life/principles

See rule 10

I think post-Shipman doctors are always trying to prolong life. If you can call it life.

Don't feel bad about wanting them to die. The years of waiting for my Dad to die were hard emotionally, massively disruptive and stretched relationships past breaking point. I'm not the only one who thinks their own life has been shortened by a relative's very drawn out, artificially prolonged endgame.

From rule 10: ‘However, there is no absolute obligation to prolong life irrespective of the consequences for the patient, and irrespective of the patient’s views’

I agree though that it is a subtly different emphasis compared with the previous guidance (Witholding and Withdrawing Treatment) based no doubt on Shipman, Gosport and the various other relevant cases.

I'm so sorry you are having to experience this. My own mother had 3 years in a care home and it was truly awful. Before that we had years of flying up and down the motorway dealing with crisis after crisis. Pumping people who have zero quality of life with antibiotics is just cruel. I don't intend to be a burden to my family but we don't know what fate has in store. There must be a better way. I hope you and your family find peace.

Death is not the worst thing that can happen to a person.
It's perfectly normal to wish for a death, or feel relief, in these circumstances.
I think you need to be much more explicit about not wanting any treatment, other than palliative, and get it in writing, if you possibly can.

It's all so profoundly unnatural. The body knows when it is spent - most very old frail people stop eating, or eat very little. Used to be that this development marked the beginning of the end. They will also succumb to simple infections or the flu. But nowadays, in care homes especially, those people are vaxxed to the hilt and nagged into drinking that fortified gloop. It's just cruel.

Doctors generally err on the side of prolonging life, without considering the consequences.

Next time be firm with the GP that they have no quality of life and that prolonging life behind its natural end is cruel.

Do you have PoA OP?

But perhaps the illness would cause suffering before death. I don’t want to die of a Covid infection and flu is painful for the elderly. I know that pneumonia was called the old man’s friend but it’s surely as much about preventing suffering as prolonging life.

I have had enough UTIs to know that I don’t want to die from an untreated one. That would be miserable, painful and possibly frightening.

Surely post Shipman, and because of Shipman, doctors are always trying not to be investigated as murderers.

Its entirely sensible to insist on no antibiotics for infection to artificially prolong a life of low quality or suffering that would have ended many times over without antibiotics.And insist on end of life care comfort planning and as required medication. It’s what I’ll advance direct for myself.

I hear you loud and clear.

My MIL has advanced dementia. She currently just remembers her 3 children who have their lives on hold. She has forgotten me. She has forgotten her grandchildren. I believe (although I would never say this to my DH or SILs) she has forgetten her beloved DH who died 3 years ago. She is on the cusp of forgetting her children and that would be beyond awful for them.

I think the care home is gearing up to move her from her lovely garden room to the locked dementia ward, where the elderly wander around like ghosts and soil themselves. This would destroy my DH and SILs.

A cocktail of drugs is forced down her throat every day. To what end? She would be so furious about all this.

When my mother got old and demanding I was glad I lived in another city and did not drive. I was also glad there were only landline then and mobiles were fairly recent. I never admitted to owning one. I also travelled a lot for my job and my sister had no idea how to get in touch with me. If I could have pressed a button to wipe my family from the face of the earth I would have done so.

I was not the golden princess growing up so I had no intention of being the golden carer.

My MIL was resuscitated in her 90’s by an ambulance crew she would have died without it. That was 6 or 7 years ago and she has been suffering ever since. She is in pain and is often distressed.
I wonder if she was in a hospital if there was more likelyhood that she would have been allowed to die.
OP, it’s completely normal to want to stop the suffering that some people have to endure.

My MIL died last year after 7 years of living with diagnosed dementia and 2 years of doolallyness before her diagnosis.

The night she died, I slept like a baby knowing it was finally over.

Don't feel guilty ❤️

i understand. Both my parents were in care homes, my DM was terrified, having horrendous hallucinations that she couldn’t get treatment for, she was trapped in a nightmare world and spent much of the time screaming. She was hospitalised and operated on, as soon as she came round the nurses thought she was reacting badly to the annesthetic because she had no short term memory at all and was very confused, I had to tell them, no she is always like this. One of the doctors ended up ringing me to advise that she isn’t hospitalised again because we now had to prioritise quality of life. The care home was reluctant but listened to the doctor finally, although there were still some carers who put the pressure on to treat. She carried on another 9 miserable months after that. I miss her terribly, but she is free, and for now so am I.

I’ve often thought that modern medicine has gone too far in some ways. Is it really ethical to artificially extend the lives of people who have no quality of life?

I hear what you are saying, but it feels like the choice between a relatively fast “natural” death, or a living hell in a body and mind that have outlived their natural life span. DM wants to be dead, she has expressed that a few times, thankfully can’t really speak or write anymore so I don’t have to be presented with it as often, yet she was an enthusiastic recipient of every vaccine going and was treated a couple of years ago fairly aggressively for Covid.

My uncle had a great death, collapsed of a heart attack walking up a hill on a holiday aged 86. Great way to go, but now with both very elderly DPs with dementia and physical illness, I need to think how I can stop myself from being in that position as I would rather die painfully at the right age than put DS through it, and turning down vaccinations etc. seems sensible once I turn 80.

I have to say my mother had Covid two years before she died in her nursing home and barely turned a hair apparently (there was an outbreak and they stopped visiting).

It’s never quite as simple as ‘stop antibiotics and die’ or ‘antibiotics ease suffering’. After one of our knock down fights with the nursing home and GP we did finally get them to stop the nursing home staff being allowed to start short courses of antibiotics - I think they were doing it either without direct GP involvement or more likely just by ringing the GP and saying ‘she’s got another UTI’ and getting abs out of the cupboard. As a result Mum actually seemed better for a while. I don’t think the constant little courses of antibiotics were very comfortable for her any more than the UTIs were.

I felt ambivalent about the vaccines because the nursing homes after all were trying to run a communal institution and I didn’t want to make life more difficult for them. But in the end I got even more of a bitch and stopped caring, I wasn’t having my mum jabbed for the benefit of other people any more.

NB DM was still at home and both DPs deemed to have full capacity when she contracted covid, so I wasn’t involved in making decisions about treating it.
I did agree to DM getting antibiotics in April as she had a fall a month after she arrived in the care home, her arm was swelling and very painful for her. At the time she was more alert than now, probably I should have refused them, but another aspect of this is that adult DCs should not have to be playing God on their DPs behalf and required to make decisions that really sit with a qualified doctor who has a holistic view of the patient.
I am glad that assisted suicide is not legal here, again I do not want to have to choose for a DP, but less enthusiastic prolonged living is different. I have told the care home not to assist DM with feeding and fluids once she’s past the point of doing it herself. Yes dying of thirst and starvation also not a pleasant way to go, but it feels natural as when the human body no longer wants to nourish itself then that seems an indication that it’s looking for a way out.

I'm not sure people actually believe this happens in Japan?

Flu vaccinations for primary school children are for the benefit of other people as were the covid vaccinations back when it was at its height. Flu vacs for people who work in social care and health are for the benefit of others.