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

It's a tough one. I think it's about quality of care, there no point keeping a person at home if the care they are receiving there is inadequate for their needs. That's not fair on anybody.

However my DSD has worked at numerous care homes, in all different areas catering to all different budgets. She would not put a relative or hers in a single one of them! It shouldn't have to be so hard to find a good one, it scares me that I couldn't be sure of the quality of care in so many places.

It also depends on the patient. My mum is a sociable lady and would cope. My dad is a very private man and he would absolutely hate living in a group environment to the point that I'd worry what he'd do to himself, there's just no way I could put him in one. Even if I had to give up work to care for him, as long as he had one single scrap of awareness, he couldn't go into a home.

I suppose the difficulty lies partly in recruiting enough good care workers to deal with increasing numbers of elderly who need care

It's not a popular profession and often falls to those who have few other employment opportunities ?

I would definitely prefer my dd to put me in a home, as long as she visited me once a week or something.
Like someone up thread said, I'm not busting my balls now trying to get her to be smart and confident to turn her into an exhausted shell while she is trying to raise her own family.

My parents have chosen their care home, as long as they can walk in ( wheeled to threshold helped to stand step and caught the other side is enough) it will care for them. They attend it's open days regularly and have informed both my sister and I of their choice.
I can't thank them enough for being so sensible and making their own choice. If it takes every penny they have I will be delighted as they have made the choices easy for us.

For dignitas to assist though in taking own life then they state you have to be of sound mind .
If I get dementia I would probably wish for this but unless I had moments of lucidity then this route may be closed down ? I don't think we can assume therefore that we can just head of to Switzerland ?

I'm not busting my balls now trying to get her to be smart and confident to turn her into an exhausted shell while she is trying to raise her own family
I agree my hope for my children is that they transcend me, go forth and flourish, realize their potentials discover and develop whatever talents and abilities they may have etc etc

The thought of them being bound to me in my decreptitude is terrible ?

The thought of my daughter sacrificing her well being to care for me while my son goes swanning ?off is even more terrible

My dad brought this up with me the other day (he's only 68, but has COPD, osteoarthritis and smokes and drinks a bit too much), as he's currently selling his house with a view to buying a bungalow in the village I live in. I've said I'm happy to provide care for him, but he's said if it comes down to him needing it 24/7 or developing Alzheimer's or something, he would prefer his house was sold and he went into s nursing home.

Girlwhowearsglasses there may be some good care homes, but my considerable experience doesn't back this up. They're mostly chronically understaffed with under qualified people, some of whom are downright unpleasant or downright stupid.

You don't see what goes on behind the scenes. The cost cutting, the short cuts, the indignity, the disrespect, the mistakes, the staffs' frustration and exhaustion. There'd be a national outcry if people knew what really went on.

I think it is good that people have these conversations long before it is a reality. My grandma went into a care home at 91. She had been very independent up to her late 80s but had rapidly deteriorating Alzheimer's and wasn't safe at home. Her care home was really good and my parents would regularly take her out for a meal at our house or to the nice cafe in the local park. My mum was under so much stress worrying about her in the run up to going in (she was working and also does a lot for my brother with mental health problems). My parents have said that they would not want to put the burden of all the care on me (a very long way off) and in turn I will say the same to my daughter.

My GFIL lived in his own home with carers going in 4x per day until he was 100! So there are other options. My PIL live very close and saw him regularly. He went into a care home when his medical needs became too great. My in laws were complementary about his care home.

Complimentary!

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.

I totally agree with you hiddenhome, people really have no idea what goes on in care homes

When I am no longer able to take care of myself then I really see no point in carrying on. I don't want to be a burden on anyone, especially my children. I will be taking a one way trip to Switzerland if I am able to and if not I will find a way to do it myself.

"You don't see what goes on behind the scenes. The cost cutting, the short cuts, the indignity, the disrespect, the mistakes, the staffs' frustration and exhaustion."

You think this doesn't happen in people's homes too? At least there is more accountability in residential and nursing homes. I'm not excusing the grim practice, I just don't see why some people seem to think care at home is any better.

I don't believe we'll see an improve in care standards until we start valuing carers and paying them accordingly. The conditions for carers are abysmal. I see poor care when I know they want to give good care but 30 mins ain't enough to provide a dignified personal care routine for someone who doesn't recognise their own child, let alone the fifth stranger in their home this week.

I doubt many carers spend 30 mins with clients, they are often woefully understaffed and overstretched. As a district nurse I saw this side all too often too. I once witnessed a carer visiting a patient I knew was an elderly diabetic gentleman living alone, leave her car engine running as she knocked on his door! Her aim was obviously in and out as fast as possible.
I'm also not sure care of the elderly should be funded collectively when many are sitting on hundreds of thousands of pounds, yet don't just want to spend it.

Accountability in nursing and residential homes? Hmm, that's a difficult one. I see plenty of bad practise and have reported it and nothing is ever done. I even contacted CQC anonymously, but, again, nothing came of that. The people who are neglectful and at fault still continue and I have to live with this on each and every shift. Working side by side with people I wouldn't let look after my animals.

Staff just become more adept at covering things up.

Sometimes the carers don't even bother feeding people because they don't have time. They give them a supplement drink instead because it's quicker and easier. People aren't taken to the toilet for hours on end because they're wearing a pad and "it lasts for hours" Medications running out because they haven't been ordered - this can include opioid painkillers for people with terminal illnesses. Nobody had baths or showers last week because the carers didn't have time. Inadequate care assistants who wouldn't even cope working in a grocers looking after vulnerable, sick and dying elderly people. Carers refusing to do certain jobs or attending to certain people. People being roughly handled - reported, but nothing is done.

This shit is routine, people. This is not an exceptional or difficult week - this is the norm. Scared? I certainly am. This is why I'm off to Switzerland.

I'm usually scared to go to work for fear of what might go wrong or what I might get the blame for. I do my best. I care, but the system is fucked.

Yes care at home services tend to be overstretched and inadequate too - I have personal experience of this. Care providers aim to make profit so they try to cut costs wherever they can. I have seen care homes ration incontinence pads, cut staff numbers to dangerous levels, build new rooms which barely fit a bed and wardrobe in and home care services which regularly double book carers as they just have far too many clients on their books. It is all done to make more money while spending as little as possible and it is the elderly people and the poor fuckers run ragged on minimum wage that suffer.

The main issue with care homes is that it is acceptable in the UK to pay staff absolute peanuts to look after the elderly. So whilst you do get some high quality decent staff you also get people who aren't actually interested in the people. One home we looked at when my Nana decided she was going into a home had an almost weekly turnover of staff so offered no continuity of care at all. It's acceptable for care home owners to cut corners and offer the very minimum of care.

That said there are some decent homes and I'm forever grateful my Nana broached the subject early and I wasn't thrust into the position my friend was where her mother took ill and basically needed to go into a home urgently offering her no time to research well.

Home care isn't all it's cracked up to be sometimes. The children of the lady next door to us are determined to keep her at home and wouldn't dream of "shoving" her in a home. However the home helps get 12 minutes per visit. 12 minutes 3 times a day is shit - they've got no time to talk to her, microwave meals are the only option and I can't see any benefit to the lady in that over a good care home. Benefits her children as they don't have to sell the house to pay for it.

If we don't need a care home then the kids can have the house. If we need care then the house goes. I'd far rather leave them nothing in inheritance than they care for me whilst juggling their own lives.

I never understand the 'family don't do that to each other' angle. Family don't negatively impact the lives of the people they love imo and I can't see how expecting one of my children to give up their life to care for me wouldn't be utterly selfish on my part. All I ask if it comes to it is that they choose the place carefully.

We're building a house and DM is going to have a Granny Annexe :)
She will sell/rent her house and put that money away for if she needs care in the future, her pensions will cover her day to day costs so it woill cost her about the same to live there as in her home.
We will be able carry on with our lives but will be there if she needs us and once a week we will all have dinner.
She nor I want to live in each others pockets but it will be peace of mind for all.

ginorwine a diagnosis of dementia does not instantly mean that you are incapable of consent. It is very often a slow onset, and people receive their diagnosis at a point where they are very well able to take it in and then take decisions as to how to proceed.

You do need to be able to provide informed consent to be helped by Dignitas, and that goes mean that you will end up taking your own life earlier than you might have wished. However, the same applies for people who use Dignitas for physical ailments, since they have to be able to travel and take the dose of lethal medication independently. The Switzerland route is second best for that reason - you always end up having to go before you really need to. Having sensible laws on assisted dying in the UK would help that, but that door has now been slammed shut for the foreseeable future.

FWIW - my father was offered the option of ending his life while he was still capable of making that decision. My parents live in the Netherlands, where they do have civilised laws on assisted dying. He said no. In his few lucid moments he now deeply, deeply regrets that decision.

For those who would be interested in the assisted suicide route (which on balance I'm against), can I suggest that you and your parents and their GP have a conversation or a series of conversations about treatment in the final years.

The sorts of advanced directives that you can print off don't look much use to me. From my point of view you need a specific, documented decision to stop use of antibiotics to fight any infections once you reach a certain level of functioning that is not acceptable to you (e.g. not able to get from usual chair to toilet independently). You also should have a discussion about eating and drinking at risk of aspiration - lots of things are done to control you getting chest infections/pneumonia.

This will mean a certain amount of pain and discomfort, if I'm honest. Chest infections are horrible and will mean breathing difficulties and pain. Urinary infections are awful as well and can mean a lot of pain. You could therefore add that you want pain and discomfort control to be the priority once you are at this level of functioning, whatever it is. YOu could also say that you don't want admitting to hospital for fluids.

I'm not a medic, so comments from doctors might be different, but my experience is that you would eliminate a lot of life-extending treatment that way and you just wont' be around as long.

Yes, I agree annandale we have end stage dementia people who go from one course of antibiotics to another just to keep them alive as their relatives won't allow them to die. It's inhumane and unnatural as far as I'm concerned, but the relatives know best apparently and this is what is done.

It's also bloody sickening that those people who make the decisions regarding assisted suicide won't ever be facing the kind of old age that most of us will they're wealthy and will be able to employ private nurses and medicine to care for them.

I was very angry about the assisted suicide bill being defeated. I understand that people are against it for certain reasons, but give us the damn choice. We're not advocating bumping people off. This is suicide not euthanasia we're asking for.

That happened to my mother hidden. No cognitive function, no mobility and restricted ability to swallow. It took some strong words from the doctor (and me) before she was allowed to be at peace. My Dad wanted her kept in that condition in hospital indefinitely.

Sorry you've experienced that Prelude

We have people who are living like this for years. It's awful. They do suffer.

Being honest again, the appalling stories that people have brought up to me when discussing assisted suicide (I'm not saying at all that I have heard all the possibilities) seem mostly to me to be about care issues, or inappropriate treatment issues, not legal issues. Some are legal knowledge issues. None of this makes them any better, they are awful, but I don't think an assisted suicide law would help.

A friend told me in this context that a doctor stated she wasn't legally able to give another dose of morphine as it took her over a legal limit to her prescribing. As far as I know, there is no such limit per patient. What she might have meant is that there was no more morphine at her practice because they aren't allowed to store more than a certain amount at a time, I believe. Or she might have been thinking of a particular legal case where a doctor was questioned about their decision to give a certain amount of morphine in terms of their intention. As far as I know, as long as the doctor's intention is to control pain, not to hasten death, they can give any amount of medication. And if a patient is not able to make that decision for themselves, then the Mental Capacity Act comes into play.

Again, I'm not a medic, so am waiting for a comment stating I don't know what the hell I'm talking about