So bloody exhausted waiting for someone to die 4

[StiffyByngsDogBartholomew]

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

My DM always said she would go to Dignitas but the PP is correct: dementia is slow so they don’t realise it’s happening until it’s too late. She is now in a fantasy world where she can get out of bed to go to the loo whereas the reality is that she’s 89% paralysed and can’t sit up in bed in her own. She also has now developed a bacterial infection so the doctor has prescribed antibiotics. It’s interesting to hear what another PP said about the side effects of antibiotics in the elderly.

'Going to Dignitas', which is in another country, will rarely be achievable for an elderly person with dementia.

But as it is a terminal illness, why can't we make our wishes known when we are younger and have full capacity? DNR orders are one thing; surely we should be able to make a declaration that we do not wish to be treated with antibiotics or vaccinated once we have passed Stage 4 of the disease or whatever a suitable cut-off point might be. Prior to Shipman, I'd imagine many compassionate doctors took this approach anyway.

There must be some sort of Code of Practice for care homes. I know that my DM’s care home will do everything to ensure they there were deemed to have done everything to keep the resident in their best contextual health otherwise they may be sued for negligence or even face prosecution. Wasn’t a care home manager arrested recently? (And released without charge).

Hey everyone,

Can I join? Reading the previous posts has made me feel less alone, didn't know they existed!

DM (who I love to bits but was/can be very verbally abusive/manipulative) was diagnosed with end stage liver disease 4 years ago, and told she had 6 months to live... she moved in with me and my DS so I could care for her... and is still here!

To be fair she has a reasonably good quality of life still, but is deteriorating slowly. Often I feel like she is showing the world the best side of her/fighting the disease when we venture out - which is great, of course - and then at home it's all incontinence pads/messes/medication/arguing about wether or not she needs an ambulance in screaming pain/refusing to eat unless it's EXACTLY what she's in the mood for (which is never healthy, good for her, or enough!)
She refuses the ideas of carers or any type of respite because she doesn't believe she's as ill as she is, and I think if I try and 'force' the matter she'll cut ties and try and manage on her own - she's good at putting up a front 😬

Some people complain if their loved one is not kept alive by any means possible.

My mum was dying of cancer at the same time as a colleague's gran. I felt it was a blessing when mum was put on a morphine pump near end of life, it depressed her breathing and she slipped away peacefully with no pain. Probably did shorten her life by a few days, but those days would not have been "good" days.

Colleague thought that her gran should not have been given as much morphine, that the end of life health visitor had decided her gran was going to die and that was it. She passed away peacefully with no pain. Colleague got all sorts of official Inquiry going. Not sure what she wanted her gran to go through for the sake of maybe a day or 2 longer on this earth. It is not as if she would have got better, got pain free, suddenly able to get out of bed or enjoyed life.

The whole point about Dignitas and dementia is that you have to go very early on whilst you can, and potentially miss out on a few years of being "okay".

I think that's the tragedy with going down that route.

This keep them alive at all costs attitude is what worries me too. Why do it? For a few more days on this earth, and unpleasant ones at that? An elderly person with advanced dementia is only going one way, let’s make it as peaceful and pain free as possible. Some of the stories you hear are horrendous. My mums life before she finally passed were horrendous enough - no quality of life at all, could do literally nothing. At least she got a morphine pump when she deteriorated to End of Life stage and we were grateful to the doctors and the Home that that was the case.

@GoldenSpraint yes you are right it is a tricky one. I remember reading about a guy years ago who admitted he chose to go earlier than he perhaps should-interesting article

https://www.theguardian.com/society/2015/may/26/jeffrey-spector-assisted-dying-dignitas-tumour-paralysis-explains-decision

Welcome @LittleRedRidingHoody I’m sorry to read about your situation.

You're on the wrong thread.
Or spamming this one.

There was a poster who regularly used to appear on these threads complaining that a care home had bumped off their relative early, also blaming it on the council.

Reading between the lines, they always came across as deluding themselves about the reality of the situation.

I wish we could be more open and honest about death.

Hello Everyone.

I just wanted to come on and say thank you to you all. You have created such a wonderful space to share your stories that have made me laugh and cry in equal measure, and feel not so alone. And also made me realise that I'm not an awful person for having the thoughts and feelings that i do in this terrible situation.

Mum was diagnosed with Alzheimer's around a year ago after i noticed some behavior changes and memory issues. At first i put it down to bad hearing and perhaps missing parts of the conversation, so we had hearing aids fitted, but it made little difference.

I have been caring for Mum since the start of Covid when she was told to stay indoors due to having COPD. I took over the shopping and paying bills. I think over this time as she stopped doing things for herself and walking anywhere it sped the decline in her lungs and in her mental function. By the time Covid was over, she was stuck in the house, not confident to go out on her own, and by that point with her breathing i think it was just easier to rely on me to do things, so it gradually progressed, to popping in every other day, to where we are now.

Mums COPD seems to be stable, but now even getting dressed is exhausting for her.
She is on water tablets due to the swelling on her legs, but this is due to lack of movement rather than Heart problems.
Her appetite is nearly non existent and her weight is down from 8.7 for 5.9stone, at 4ft 10.
She gets very upset at how tired she is, but cant seem to connect that as her body is struggling to breath it is using more energy and she is effectively starving herself so of course she is tired. Its like she is stuck on this hellish merry go round.

The Alzheimer's is at a moderate stage, but it seems like every couple of weeks there is a little step down. Im going in everyday after work to prepare dinner, clean and do washing ( not that there is a lot of it, as she wont put on clothes preferring to stay in pajamas). I phone multiple times a day to check in and make sure she is using her puffer etc. I feel like i am drowning. I'm a single parent to a teenager who is going trough his GCSE year.

I feel like i am just doing a shit job with everything, Mum hates that i don't spend more time with her, especially at the weekend. I don't get in before 7.30 pm each night, so my teen is on his own until then so his school work is slipping. I am out of the house by 7 in the morning, i am putting off doing courses i have do do for my job and seem to spend more time sorting out prescriptions, doctors, bills. I have stopped taking my own medication as it wears me out and i need hospital monitoring while i am on it and i just cant take anymore time off work for these appointments, when i am already pushing it with the time off i have to take to run mum everywhere.

Mums Doctor has recently put her on a respect plan, and has marked her as palliative care only. I feel so overwhelmed. i hate that the person i am talking to is not my mum anymore. This person is so inward in herself that there is no thought for anyone, it is the same conversation over and over again.
I feel like the worst person in the world, but i felt relief when the doctor said that they did not think there were certain situations where they would try to prolong her life for. I sit and look at the steriod inhalers, flu jabs, covid jabs and just think why? If she is going to die, isn't it better for her body to go while some of her mind is still there? I have stopped begging her to eat, i get myself to the point of tears, and she is not going to remember it anyway.
I feel like i am in limbo. My son and i are still waiting to do are holiday we put off in 2020 as there is no way mum could cope on her own. I feel like i am robbing my Son of the last part of his teen years to keep mum going. It is no life for any of us, but people look at you like your crazy.. i mean how can you want your own mum, your bestfriend to die? Its because i want her to die while there is still something of her left, i don't want her alone and scared in a home her body being kept alive and not being able to do anything for herself. but most people just don't understand it.

God this has been like a word vomit of everything my brain has been wanting to say, but can't. It has been like a typing version of screaming into a pillow.

Sorry to have droned on, just needed to get this out, and say thank you and big hugs to all of us who lay awake at night not being able to stop our heads from spinning in the dark

@TheShellBeach looks like spam to me (no posting history). I've reported it.

I find it remarkable in the current ‘right to die’ debate just how many people are furiously opposed to it - not just for themselves but for everybody else. This is regardless of other people’s wishes or choice, quality of life or level of suffering. Even otherwise rational seeming people use emotive words like “killing” the elderly off and so forth. I don’t really understand that response myself. I also wonder if they would feel the same if they were doing the 24/7 physical and emotional caring themselves for a very sick person with no quality of life who no longer wished to stay alive. I suspect it’s more likely that they expect others to do the caring - out of sight.

It is a big topic, not easily encapsulated in a few sentences. We are all different but that’s all the more reason for individuals to have freedom of choice.

@SunshineSky81

Massive massive hugs to you. I have felt exactly the same as you do now.

All the things we're not supposed to think are exactly what we can say in this space - the wish for our loved ones to die, the pointlessness of intervention, all of it.

I can't imagine how you manage with a child as well, you're so not rubbish to cope with everything.

In August and September of this year I was at breaking point like you seem to be now.

Do you have Power of Attorney? If you don't it will make things a lot easier if you can get it.

You sound so overwhelmed and exhausted - and you say your son's school work is suffering. What I found very difficult to do was to tell myself that I was still young, my mum was old, I had to prioritise myself and not her because when she was my age she was living for herself. She didn't have this awful burden suffocating her.

So whatever you have to do to shift your priorities to yourself and your son you need to do because it's the two of you that still have your lives ahead of you, not your mum.

@SunshineSky81 more hugs for you, you are an absolute warrior for taking all of that on. Has your mum has a social services assessment? Would she be open to the idea of carers coming in a few times a day, taking the pressure off you a bit?

@SunshineSky81 gosh you sound fantastic. I really enjoy the safe space on these threads where a good ‘word vomit’ helps. Vent away.

I would say as others have - prioritise yourself and your son.

I also reported it but it's still there.
😂

Whether she's open to the idea or not, @SunshineSky81 needs to step back.

Trying to be a mother, a carer and working, too, is not sustainable.

@SunshineSky81 please get a care assessment for your mother, and tell them that you cannot do any of the caring. Please stop trying to do everything yourself. You're destroying your health. And inadvertently neglecting your child's needs.

Your work, too, will be suffering, as you try to keep thinking ahead and spinning too many plates.

You sound like a lovely daughter and mother, but do remember that dementia can take years before it kills you. Your son could be grown up by the time your mother dies.

I'm sure she wouldn't want this distress for you. It's time to step back. The stress is clearly getting to you, and it's not surprising.

@SunshineSky81 another hug for you.

Thank you for all your replies, and hugs. I have been very teary today, which is not like me. Im scared to start, because if i do i won't be able to hold myself together.

I get what you are saying about social services and carers, but i just cant at the moment. She is terrified of strangers, she hasn't even met my partner of 4 years. And to be honest, i don't want strangers looking after her.
She is my mum, before all this happened she was my best friend, i was so blessed to have had a mum like her.
I have always been the strong one, the one that just gets on with it, that takes on what needs to be done. It was the same when my sister died, then my dad. I dont know how to be anything else.
I suppose the time will come when it will have to happen, but i just can't face it yet. I honestly think it would make me brake quicker than caring for her.

I am trying to take slight steps back where i can. I don't run round at night for something that could wait till the next day for example

@SunshineSky81 would you be able to look at differently if we suggested the social services assessment and that if you and mum could accept some external help you could then have time to spend with her as you used to. As hard as it is this is the crisis and you might both need to think outside the box to try and get onto the next stage of life.

@SunshineSky81 i totally understand the thinking of “but it’s my mum” and wanting to do your best. We can say you don’t have to set yourself on fire to keep someone else warm all day long but you have to be ready to accept help too.

Just as long as you know that it’s ok to say you can’t do it all any more. It’s difficult if your mum is frightened of strangers, but if you collapse with the weight of all your responsibilities, then she won’t have any choice. Far better to start the concept of external help as early as possible and gradually introduce them so both of you can adjust and develop those support systems so if you are unavailable your mum is still ok.

@SunshineSky81 what would happen if you broke your leg and had to stay in hospital?

You need a back-up plan.

And dementia care is so relentless. What are you going to do when it becomes unsafe to leave your mum alone at night?

Unfortunately doctors and other care professionals are dammed if they do and dammed if they don't! A few years ago there was a huge blow up in the press of the Liverpool pathway protocol I think it was called which is essentially stopping food and drink via drip at some point, just what many here are thinking is humane - don't force complan etc.

We need a proper national conversation about end of life for those with degenerative conditions that strip capacity eg dementia. About when enough is enough and all support should be withdrawn but also about treatment for comorbidities etc earlier in the disease progression. At the moment it is down to relatives and some do insist on prolonging life.