So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

If you had to make the choice between 24/7 live in carers or nursing home - WWYD?

I am not in the UK but have experience with both. 24/7 care at home was still stressfull for me and my father: adjustments in the house, administration, loads of medical stuff that needed to be taken care of: everytime my father got sick we needed a nurse or a GP to come over and they rarely have time. It was nice for my father to remain at home but in the end it almost wasn’t his home anymore because we completely had to rearrange it into a miniature care home.

Then we finally decided he needed to get into a real care home. And for him it took some adjusting but: the carers there were very skilled, there were always nurses around and doctors within a few hours. The care home was much better equipped to care for him: he could navigate in a special electric wheelchair through the halls, while in his own house he was bedridden.
And we sold his house while he was still alive, also a plus: i found lots of stuff cleaning it and was still able to ask him about stuff, about people on pictures. We had lots of valuable conversations because of this, good memories!

ADC, I'm not very good with site stuff so can't link but I started a thread beginning of December called 'Living in own home', which has some discussion you might find helpful.
Basically costs-wise I think it's about the same. But at home care has the added issue of bills and maintenance, and also renovations and equipment for accessibility. So you need to think about everything from cleaning/gutter clearance and blocked drains to hoists, hospital beds and wet rooms. So it really depends what stage the person is at.

That’s lovely to read, @DutchCowgirl . My mum is fading away much quicker than anticipated and I suspect she hasn’t got long left (weeks, not months). She wants to be at home but the medics currently in charge recommend that she goes into a nursing home.

Thanks, @SeriouslyAgain - she is so far gone that all we need is a hospital bed, a hoist and a bedpan. The house is in good condition.

What I do appreciate is the call outs for the doctors, the admin, the food shop, changing the beds when the next round of carers come in.

Unless you're very rich and are willing to organise everything with regard to the carers, I'd choose a nursing home.

The logistics of getting and keeping 24 hrs carers are immense. You need to find four. And you need to keep an eye on the food shopping. And the maintenance of the house. It just never ends.

And the medical appointments still need to be sorted out. And the carers will keep falling out with each other.

Nursing home!

Sorry @ADCisntme I posted the above before seeing your update.
I'd go for the nursing home in your circumstances. They're fully set up for end of life care.

@ADCisntme I think if she is that far gone, it's perhaps hard to think of any particular positives of at home care? Which is usually for when the person can really appreciate being in their own home and pottering about being 'independent'.
And TheShellBeach makes a good point about the carers falling out. Numbers of carers and the way they work varies, but gosh it's like being a playground monitor in a primary school!!

I would say though that I'm not sure the costs vary that much from what I've heard (although obviously you do have the house bills on top, which you wouldn't in a care home and with the cost of gas and electric in a house kept at permanently tropical temperatures...!)

Thanks for your replies and yes, the admin, organisation, shopping, petty cash, carer switch over etc etc will be the most enormous headache. I live 3 hours away and have a DC at school.

The advantages for being at home are for one to one care, someone to make sure she eats and drinks, someone to turn over the TV for her, someone to make her friends cups of tea and to keep her company. A nursing home would be much cheaper and easier but I’m worried that she’ll be left in her room a lot and will be forgotten about 😞

Ah OK yes. So that is the benefit: my mum is absolutely cosseted at all times. All food freshly cooked for her, her likes and dislikes listened to, wine with dinner whenever she wants, takeaways when she demands them. And sorry to be disgusting, but nappies changed really regularly, and things like moisturising done all the time.
But - and I would only ever say this on this thread, never out in the wilds of mumsnet - the level of cosseting does mean I think that she is living way past when perhaps it would be kinder for her to die. She has really poor cognitive ability and she would have hated to be the person she has become. She was a very proud person and now often she can't talk or feed herself. She is literally kept alive during those times by having someone spooning stuff into her mouth and reminding her to chew amd swallow every 10 seconds. So it's honestly a bit of a double edged sword. 😢

You can employ someone to sit with her if you're worried about that.

I'm in the middle of this dilemma though my mother isn't end-of-life, I think she may live many years but she's almost immobile and has dementia.

We're very close to pushing the button finding a nursing home. Her house is too big, the carers need a lot of management (both emotional and practical), there is always a problem with the boiler/roof/tree. We've been treading water but we've reached a point where it's dangerous for her without complicated adaptations. And these adapations, as someone says above, essentially turn the house into a care hom - like she needs to move to a bed downstairs, build a wet room, put ramps everywhere.

I oscillate. I know that I'd rather live in her very beautiful house with gorgeous garden in the middle of a desirable city than a care home. But I'm not immobile with dementia. In her case, there's the additional factor that moving her while she's still cognitively able to adjust makes sense. I feel that not to move her is delaying the inevitable.

I find a lot of the language around care homes is unhelpful. I can hear her (far healthier) friends saying 'oh the children put her in a care home'. When I'm trying to do what's best and also working hard to find out what she wants. The trouble is with dementia is that she in too much in the moment so will say she wants to be in a care home near me when with me, but tells others that she wants to remain in the city two hours away.

I would also add that when I see her I'm always bustling doing things. I took her out the other day and we talked properly for the first time in ages and I think that in a home we'd do more of that as I wouldn't be going through paperwork, sorting out broken kitchen lights etc.

the maintenance of an elderly person's home is a terrible drain @Valleyofthedollymix., especially if you live miles away. We had this with my mother - it gets to be too much. And building a (downstairs) wet room sounds as if it would be very expensive. For a younger disabled person perhaps, but a bit of a waste of energy and effort if you think she will need nursing home care within a couple of years anyway.

I have a friend who went to the expense of actually putting a lift in her mother's house, ostensibly so that her mother wouldn't have to struggle up the stairs.

But her mother had dementia and didn't understand what the lift was. She never used it.

And as a home carer myself, I've seen countless wonderful bathroom adaptations, which cost the earth, and which the elderly person just doesn't use, because they don't recognise them, so they don't use them.

You'd get almost all of that in a good care home though. Not the one to one care all the time unless it was warranted, but meals cooked to particular tastes and requirements, cups of tea for visitors, not left vegetating in room but things going on.

I'd imagine the adaptions eventually make the house more difficult to sell too, like the lift described above. It's really offputting to buyers when the time comes to sell to fund care. I suppose a small number of people might welcome a lift in the living room-to-bedroom, but it's then a specialised house for the disabled I suppose.

Another thing to consider is the social aspect of a care home. At home with live in carers she will see the same 4 carers each week plus any family and friend visitors. She will probably rarely leave home other than medical appointments.

Obviously all care homes are different but in my mother's which is small - only 24 residents - she sees 8-10 cheerful staff each day. She sits with 2-4 other residents for every meal plus time in the lounge or conservatory or garden together. There is not much conversation from my mum who has dementia but the ones who don't have it do talk to her, say hello, ask how she is. So she sees and has brief interaction with about 20 people a day. I think that is good for her.

On top of that they have activities. A weekly exercise class where they do seated games which help flexibility and strength run by a Personal Trainer who visits. Every 4-6 weeks they have a live singer perform in the lounge or a local primary school comes to sing for them. They celebrate everything including breast cancer awareness, Eid, harvest festival by having a day where they wear as much pink as possible and have pink balloons, making harvest garlands for their doors etc. a hairdresser visits as does a chiropodist for those that needs or want it. And they even take every mobile resident out in threes once a month for a pub lunch. Plus an annual day trip to the coast in summer in groups of six.

I think my mum's place is the exception rather than the rule but, even if you found somewhere doing a fraction of that, it's a much nicer day than being alone in a house that eventually she will no longer even realise is 'home'.

Care home or assisted living services also usually take over medications, repeat prescriptions, vaccines, bloods etc. Not to mention chiropody and hairdressing as the PP mentioned above. Anyone with an elderly relative still living in their own home will recognise the constant merry-go-round of appts and phonecalls that doing all that yourself involves. I really struggled to get my mother up and out in time for morning appts when she lived alone.

FIL resisted MIL going into a care hone until he was dying convinced she was better off at home. She was at home with him, carers 4 times a day, family visits and the occasional friend visiting. When she moved into a care home she blossomed from the increased social contact. She had her favourite spot where she could see all the comings and goings and loved joining in the singing sessions even though she was non verbal following her stroke and could only make random noises.

Please don’t cave into your brother’s demands to pay for his flight back to the UK. He sounds absolutely toxic and his presence at your Dad’s funeral is not going to help or support you. I’ve found this website very helpful in terms of reinforcing my decision to distance myself from extended family who can’t reach out and even offer some emotional support despite knowing how stressed I am.
https://www.standalone.org.uk/guides/adultchildren/

You’d be selling to a particular age group. 50s to 60s would look at the lift and say “this would do us in our old age too”.

Cant see that a downstairs wet room would be a disadvantage.

Ramps and rails perhaps not. Reminded of the scene at the start of Marigold Hotel when Bill Nighy and wife are being shown round an apartment designed for the elderly

It depends on the lift. My father hired a lift from social services (or the Dutch equivalent ). It was a cheaper model with feet that were placed on the carpet on the stairs. And the handrail had to be taken down. So you couldn’t really use the stairs for walking anymore or it could be dangerous.
After he went to a care home , the lift was removed and we were left with big ugly holes in the wall.

Anyway the woman who bought the house stripped everything completely, she wasn’t bothered by it.