We need to talk about nursing homes

[Abookaday]

Had lunch a couple of days ago with a group of female friends and a discussion commenced about maybe requiring nursing home care when we were old.

Comments were made by my friends that they would die before they entered a nursing home. One stated she would haunt her children If they moved her into a nursing home

I asked around and none had made the financial means to have 24 hour. carers. No one had actually had a frank discussion with their daughters ( it always seems women end up doing the brunt of caring for elderly relatives) about them ceasing work/commitments to provide full time care when/if the time came.

I adore my parents but the reality is that I need to work to pay the bills as my DP's work is unstable and whilst I would prefer not to put my parents in a nurisng home, if they in the future required 24 hour care it would be the only option. I think many women now have huge financial responsiblities and child care responsibilities and would have similar situation. I have told my DD she is only to make the best decision she can in relation to any long term care I may need(in the very distance future hopefully)

I completely understand why you wouldn't want to end up in a nursing home but then have a responsiblity to at least have a conversation with your kids about your expectations. You also can't guilt your children into becoming full time carers as most of us have no choice but to work to pay the bills

Thank you. It must be so very difficult for you to see all the time

hiddenhome that's exactly what I'm talking about - it is the doctor's decision to give or to withhold treatment, and it is a care issue and they are actually breaking the law if a doctor is acting against a patient's best interests because of the wishes of the family. obviously the next of kin should always be consulted but it isn't their decision and in many cases that's because it would be a terrible burden to make that decision. Very hard for the doctors but that is the legal position, right now.

It's getting to me tbh Prelude. I am depressed about it. I didn't become a nurse in order to neglect people. I feel useless because I have no managerial power and taking things higher would mean losing my job. I'm the family breadwinner, so I feel trapped.

annandale I hardly ever see the doctors going against the family's wishes. Perhaps they fear legal action, I don't know

annandale we have Harold Shipman to thank for this morphine situation. I see piddling amounts prescribed now. They'd rather give sedation than up the morphine. Can you still feel pain if you're sedated? I'm not sure. We try not to think about it.

Doctors are terrified of being accused of 'offing' somebody even if it eased their suffering and just slightly hastened the inevitable.

surely it says alot about nursing homes and the appalling standard of care (if you can even call it that) they deliver. (Yes i am sure there is the odd good one, but many are awful places) and a lot more needs to be done to make care homes decent places instead of factory farms for our elderly population.

I also dont think there is enough palliative care training, or pallitive care drs. Esp given the reality that the one certainty of being alive is death.

I'm currently watching my mum drive herself to physical and mental exhaustion caring for her mum with dementia.

Yes, it's always the women who get stuck doing the caring. She has two brothers but they're full of excuses that they love further away / are busy with work etc.

It's getting to the point where a nursing home is on the cards. My grandmother is incapable of caring for herself. She's started to have carers come in three times a day, but that isn't working because she spends all day in bed and they wake her up, plus she refuses to eat the food they make her.

Of course no one ever WANTS to put their elderly and vulnerable relative into a care home, but sometimes there is no other option. I don't think my mum should have to run herself ragged for much longer. Already I can see there is not much love left, just obligation and tremendous sense of guilt. It's a torturous life and things will only get worse and worse until death - and that could be years away.

Personally, if I received a dementia diagnosis I would want to go down the assisted suicide route.

There will never be enough money to provide the standard of care that's needed. It would cost a kings ransom to provide enough decently paid staff let alone training and equipment.

Our carers are on minimum wage and the manager still complains that it costs too much. Some shifts are deliberately short staffed in order to save money.

Leisle "Sooner or later, we are going to have to disabuse ourselves of the idea that we have a right to receive years of end of life accommodation whilst still being able to pass our assets on to our children untouched."

This is what I fear will happen. The trouble is you make decisions about property forty or fifty years before this comes back to bite you.

Would one be better renting do you think? When I first bought a house back in the 80s I remember renting then being cheaper than mortgages and I thought of it as an easy option. Now I wonder if I made the right decision by buying.

I don't want to be forced to spend the money on care costs for myself. I would want to die and people should be given the choice.

Again, choice, we don't have this and it's sickening.

The decision makers get to make choices because this is what having money provides.

How fab that we've all been able to offer our different thoughts and opinions on this debate, without it lapsing into insults, extremism and name calling .

Well most people would have at least a period in retirement or hopefully before where they wouldn't be paying housing costs if they buy, miaowroar. And not everyone requires care later on anyway. So I don't think end of life care is a reason not to buy if you would otherwise want to do so.

But maybe as the threshold increases, which it must, people will be less inclined to want all their net worth to be in property. Ie they'll downsize then dissipate. May not be a bad thing, given our current fucked up housing market. If it solves the issue we have of elderly people rattling around in five bed houses while families with young children squeeze into two bed flats costing four times as much, that'll be a positive.

Hidden&suzanne
Suicide is not illegal. What is is assisted suicide. And with a condition like dementia which may affect judgement and reasoning, not to mention no one knows how they will adjust to a new health problem. I can assure you that as a doctor I do not want to be assisting someone to commit suicide where they are worrying about inheritance / burdening others / being a nuisance. And I do not want to be making judgements about how reasonable or otherwise someone else's reasons are.
Funnily enough, for he number of times I've heard "give me a bottle of pills or a trip to dignitas" it is actually rare for people to decide to do this. Diagnosis either comes early (when the person may have terms of good quality life still ahead of hem) or at a point where they are unable to make a decision for themselves. Worries me that those saying "just give me a pill" would feel otherwise (as borne out by number of people actually commuting suicide on diagnosis) in reality. Would you have an advance directive? Would that mean assisting the "suicide" of someone who doesn't realise what is happening? I can understand the wish to choose how you die but it is absolutely fraught with ethical and practical issues that I can't reconcile myself to.

Suicide is not illegal
what made you think I wasn't aware of that?

The care homes where my GP who ended up going into where very good and they actually liked them. They didn't last years and years but they were very ill when they went in really. They were good ones though even ten years ago they were expensive.

They got treated much better than with the succession of care workers who came in 15-20 minutes a day into there homes just prior to going into care homes at often random times - rarely same person rarely same time and not always very good.

I think it is good that people have these conversations long before it is a reality.

Sometime people won't or their ideas change with time.

MIL refused to believe what a care home was costing over two decade ago she insist it must have been super deluxe rather than good but standard. Till recently she always told DH put me in a home.

That's all stopped now. Suddenly after ten years of digs at me for not working full time with young DC - like she did ignoring fact she had on tap free childcare had few years not working as well - now I can see possibilities as DC are older - suddenly I'm not supposed to work. This is just as they are retiring.

From comments she has made I'm very clearly being lined up at least in her mind to provide her care needs. Already told DH I won't be looking after her full time. He says he won't expect it but I expect when time comes there will be pressure.

I watched my parents struggle with work, rising teenagers and providing care for their parents as their siblings disappeared and couldn't help. Tipped them over into ill healthy which means their retirements aren't as great as they could be.

I don't want that especially for someone who hasn't been that nice to me for a considerable amount of time. I suspect I'll have to play the bitch and be very firm saying no - or be the practical one of well if you won't do care home and living with us isn't an option what are you doing? I suspect everyone else with want to fudge along with it more and more falling on my shoulders.

On rare occasions there has been an opportunity to talk about care homes suddenly to IL I'm not family enough to have a view.

I think it fairly common that people don't want to look that far ahead or refuse to look with clear sight.

I'm very clearly being lined up at least in her mind to provide her care needs

suddenly she see's a use for you:(

I'm sure the ethical difficulties can be dealt with. Presumably The Netherlands and Switzerland are managing.

Leave it to the doctors and nurses who are willing to assist someone to take their own life. The nurses usually see more of the misery that is caused by illnesses/disability. It's interesting that the RCN takes a neutral stance in this issue whereas the BMA are against it.

I don't understand why you are all making these either/or decisions re: nursing home v assisted suicide though? Are those of you who are thinking of it for themselves (and I could see a time I could consider this) really saying there is no period of time between 'needing a lot of help' and 'personally chosen exit'??

I think there's a considerably long period of time we all might consider between those points of time, and as a society we still need to find a way for dignified assistance in life and death (whether or not we control the fine tuning of when death happens is beside the point?

My dmil ended up in a home and it was just awful. DFIL was able to be cared for by sil until very near the end.
My dF did not make old bones but my mum is very clear. We are to spend every penny she has on care for her and not nurse her ourselves. She is 75 and had parents that lived to their 90s so has thought about it. She may well move closer to us in the next few years and will pay for care, do Internet shopping, get taxis rather than drive. Any spare time me and sis can find she wants to spend doing good things, like going to the pub or shopping or Just sitting chatting and watching the world go by with us, not cooking or cleaning.

Just to be clear, this is what me and dh anticipate for ourselves as well. My dm was left with her parents as both her sisters emigrated and really just sat and waited for a cheque for their share of the estate. That's what would happen to me, one dbro has already emigrated. With my dds, one is a Coper. I won't have her burdened.

Girl if it's left too late, the person isn't able to get themselves to Switzerland. You can go from being relatively okay to pretty sick and incapacitated quite quickly. You need to be on the ball and get the timings right. This is why it's so unfair to deny people assisted suicide in this country. People are dying prematurely at Dignitas because they can't afford to leave it too late.

Both my parents have said that they will move into a home if it's necessary.

Early 70s, with ill health but can just about manage (and I do what I can, DBro lives overseas).

My parents looked after my maternal grandad for years. He was an entitled sod, just expected it to happen as his due, and the stress of this contributed significantly to the poor health both my parents have now.

DBro and I supported our parents as best we could, although we were teenagers. While my Mum's 4 siblings did bugger all and left it all to mum and dad, making a great fuss if they came round and changed Grandad's bedding.

Yes, years later I'm still somewhat bitter towards them, they did know about the chest pains my mum got, that were eventually diagnosed as stress, after ECG tests, etc, they knew about the poor health, my dad's heart bypass operation, and so on. And did nothing.

In fact, they protested when my parents eventually managed to get SS to move grandad into a home. They had to explicitly make him homeless by refusing to allow him back to the house when he'd gone into hospital for yet another UTI (a SW actually advised them to do this, off the record).

They cared for my grandad, but their own health was so poor that if my grandad fell, they had to call an ambulance to help them get him up. The home was a massive improvement for my grandad's health, and also my parents health, and should have been arranged years before.

So, those of you talking about how family is supposed to care for each other, well, you've probably never had to deal with the kind of unrelenting slog my parents had.

You need to have the conversation with your family, discuss your expectations, and also listen to what your children might have to say about what they feel they can provide. Don't expect a DIL to want any part of your care, she'll most likely be saving her efforts for her own parents. And remember, that family relationship can often be much better if your children are not also acting as your intimate 24/7 carer. Be realistic. These days many people can't just give up work as they need the money to pay bills, etc.

Just had my mum over from Ireland, I live in Scotland and have had a chat about what happens and she says she wants to go to dignitas, she doesn't want to see my brother or i looking after her or coming to visit her in a care home. She was in one herself recuperating after an accident and is now out so has no desire to go back into one in later life