Caring for elderly relatives? Pop in for support, a hand hold, advice, whatever you need.

Needmoresleep you asked if decent respite care is affordable - the answer is 'sort of'. My mum has some savings, her own flat on a very nice estate, and good work pensions which comfortably exceed her current outgoings, so she has luckily has no money worries but equally isn't at the top end of affluent I recently enquired about the cost of a week's respite in my mother-in-law's nursing home and the answer was £1,500 - that potentially could be paid if need be but certainly couldn't be done at the drop of a hat. I'll start looking into private care firms locally. There's no attendance allowance or anything like that - that would need a social work assessment, am I right? She's been flagged up to social work but at present wouldn't agree to an assessment. Sorry to bang on further! I'll shut up now.

Annandale thank you - that's really good advice.

View can you present it as 'I need help, and therefore Angel Care will be coming in twice a day'? I would imagine the response from your mum might be similar but it might help you press on. Id also expect things to get worse for a bit - 7 calls a day plus all the hassle of liaising with the carers! But with the view that this is going to have to happen at some point. Of course it is OK for you to go on holiday, see other family or friends, have a family trip out or a week day to yourself. Of course it is. And that remains the case even if things are semi-engineered to go wrong - for example I know my mum concentrates 100% on her horrible stairs because she's living where she wants to. If we ever do get her to move, she will probably turn awkwardly in her new bathroom and break her hip on day 3. It still doesn't make moving the wrong decision, nor would a crisis blowing up as soon as you leave make going on holiday wrong.

Thank you very very much for your replies. They confirm pretty much what I know to be true - that the current situation, which has gone on for two years now at quite an intense pitch, isn't sustainable for us. At the moment, my Mum says she 'doesn't need help' (i.e. from outside agencies) while drawing heavily on me, my husband and a couple of lovely friends. I think a cleaner is the place to start, as much to get her used to having someone in. But it's finding the strength to push things through (I've checked out the Out of the Fog website, which is helpful) when the most minor of issues result in a torrent of angry unreasonableness..

view good advice from nms and certainly look at introducing carers- 4-5 times a day is a massive commitment. You deserve your holidays and your children deserve you- also try the local carers association.
yolo thinking of you- 🍷🍷🍫🍫🌺🌺 hope your mum is settling.
nota sending you this🍀🍀for luck...
whatever how are you doing? And ☕️☕️🍫🍫to everyone else.

Hi view and welcome. I think you may need to regroup a little as I can't see your situation being good for you and your own family at the moment, let alone going forwards. Can you find a way to ease off the number of phone calls, and intensity of the situation? If your mum has the money, I think it's worth looking at some level of outside support such as a carer visit - even better if you can find someone who 'pops in' once a day (ie can play along with not being a paid carer), and can take some of the weight off you. If you/she hasn't claimed Attendance Allowance, then get that done now to help pay for some of these things. I wish I'd got mum a cleaner earlier on, so that it meant one less thing for me.

Does she have enough money to pay for a weeks top flight respite care?

Someone descributed the one my mum was in as like being on a luxury cruise ship that never went into port. Lots of smiley staff, a daily schedule of activities and some very good locally sourced food.

Being cynical it is in their interests to have someone be comfortable with them on a short stay. They will hope then that you become their first port of call if she needs to make a permanent move.

Talk to a few, ask what they do, and then decide. Yes on one hand she may be very upset/confused. On the other that is her illness, you need a break and there will come a point when you can no longer meet her care needs alone, so she willl have to adapt.

Or if you think she will be better off at home, speak to one of the 24 hour care agencies - some local ones do this as well as national ones. And see what they say.

I was lucky though. My mother loved cruises so absolutely got the luxury and routine. She was also post-op so needed the on site nursing care, amnd was already confused by her hospital stay. .

Hi, sorry to barge in, I've been lurking on this thread for a while and am finding it really useful to see how many of us are in similarish situations with similarly demanding parents.

I have a tendency to ramble on - so my main question is, does anyone have insights into how to manage family holidays without their elderly parent? My widowed elderly mum can't stand for us to be away even overnight without her, to the point that it's only possible to imagine family holidays again when she has lost capacity enough to accept carers etc. But though she does have dementia with Lewy Bodies she is clearly 'not that bad' just now, especially given some of the other scenarios I've read about here. She is 80 and lives independently a ten minute drive from us; I am married with two young children. I've recently come to believe that she is on the spectrum for narcissistic personality disorder (armchair psychologist!); I am doing my best with her but always found her difficult. She is incredibly angry these days without my dad, in strong denial about her illness and needs very carefully handled, talks incessantly and craves one-to-one attention to the detriment of the children. I talk to her about 4-5 times a day, see how pretty much every day and have no siblings. We have had three holidays in the last year where we have taken her with us with the help of a very kind and long-suffering family friend, but this has come to an end now as being away from home like that is clearly raising my Mum's confusion levels through the roof.

I do feel guilty wittering on about holidays when i know many folk can't have them anyway due to financial or health reasons. I think it's feeling restricted that is gnawing away at me, and the loss of time spent with our kids.

Does any of this resonate with anyone? Do I need to find a way to be firmer and introduce carers?

I hope I didn't sound dismissive yola I truly hope that it shakes things up - and yes, you have to try and at the very least put down a marker as to what is not acceptable.

Leprehaun update - the fridge magnet I bought from ebay is top heavy, which means the horseshoe the damn thing is sitting up keeps tipping upside down (and whilst mum doesn't know what day/week/year it is, she has total recall for all her superstitions, and you can't have an upside down horseshoe in the house.) So my quest continues...

thank you nota. I also have no faith it will make any difference, but you have to try? exhausting day, too tired to make sense, and DM being very difficult. DB goes home tomorrow and is counting the seconds. Night all

yolo The fuckwit in question is Matt Hancock MP (appointed Secretary of State for Health and Social Care on 9 July 2018).

Good luck with the letter, however my experience of doing a similar letter in similar circs last year, was that it changed nothing. I think everyone knows and acknowledges how shambolic these systems are, but there is no will (ie money) to sort it out. Like you, I am a strong believer in the NHS, but the lack of staffing, resources, investment in infrastructure etc means that the areas like elderly care are essentially broken to the point that many of the patients need advocates to push through the system.

on p.3 already and that's just what I can work out from memory. going back to see what I have documented on here but have .

🍫🍫☕️☕️and one small 🍷to ensure it still makes senseyolo

yes pickle attachment of timeline is a good idea. and sandwich I am also going to copy it, with covering letter, to whichever fuckwit is currently sec of state for health and TM too... going to get started now, in the immortal words of Scott of the Antarctic "I may be some time"

Oh yolo it’s a bad dream isn’t it? But yes- go to the top with timeline. As many facts as possible.
Hope it improves for you all.

First carer failure: no one available to come to put her to bed as waiting on an ambulance for patient emergency. FFS she's only been out 24 hours!! DB pointed that no one would be with her after Sat morning and put her to bed himself without telling her about failure.

Thinking about my complaint, which is pretty much across the board, hospital, care home, treatment while she was home for 4 days, then back into hospital for 10 days, discharge chaos and now this: does it seem sensible if I start with a timeline and find the fuckups along the way and then condense them into a letter? Am going to go straight to trust CEO because this is across the board failure, not just any one bit of the service (although paramedics were amazing at every stage).

Keep strong yolo dollop on the Teflon!

You are all absolutely right and it has strengthened my resolve. Am going to say DD1 has late shift at work and no idea what time she will finish between 11pm and 3am therefore cant be relied on.

Just been round to see her, poor bloody DB he's had her ALL day and I only managed just over an hour. She is full of self-pity but also very demanding and we are both running around after her - I'm doing admin, he's doing chat and food. District nurse came, she has pressure sore from being in hospital. 3 day nurse team came out to get her up this morning and will be back tonight to put her to bed - or actually to assess how well she manages. Think they will do Fri and Sat as well, then SS team take over from Sun. Slightly anxious about that transition but they must have done it a million times before.

Ho hum, as they used to say on Hill Street Blues: Be careful out there!

Pretend you have a bad cold or flu. Say that it would be wrong to be there.

Because when you really do become so run down that you do have a virus, she/they will have to manage without you.

There is a lot to be said for an occasisonal absence and making sure you don't become indispensible.

Agree with everyone else. She wants to be home. You have a right to be in your home. You need it for your health and sanity. Keep strong- otherwise you will never be able to leave.
Push for care package. And be kind to yourself.

Yolo I know it's really, really hard but if it was me I'd try to resist the idea of going to stay. The support services will surely have to get it together as they have a duty of care but if they know you will be on hand it might not be as high a priority. Sadly your DM does need to realise the care she needs and that it's now become more than you can provide. Don't put yourself at the bottom of the priorities, your own family need you too. I found it much easier when my husband firmly said a blanket no, that it was not an option for me to volunteer to do more. He was just looking out for me but it gave me the 'permission ' I needed to put myself first a little.
All so hard I know and there's no easy solution at all. Hope you ok x

DB goes on home on Sat am. She is already going on about being scared to be alone at night; no idea whether care plan (and poss overnight carer) will be in place by then but doubt it very much.

I REALLY REALLY dont want to go and sleep there - although I could, it's just round the corner, the DDs are both grown up and one is away. I just dont want to. I want to be in my own house, with my own husband, and my own cats, doing my own thing. God that sounds so bloody selfish, but I just cant face the prospect.

We all need hourly check ins for support on here! Right ok it's heading towards lunchtime. Thursday we got this. Stay strong people 💪🏻