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Care & carers

Care! The price of the care system in emotions.

(16 Posts)
maddyone Mon 25-Oct-21 23:08:04

I’m not sure what I expect from this thread, but I’ll give as brief an outline of the circumstances as I can. My mother will be 94 next week. After her third fall in six months she was yet again hospitalised with a broken shoulder and another small brain injury. After two weeks she was discharged into a care home to recuperate. The care home was absolutely lovely, the staff lovely, and we could visit every day if we wanted to without difficulties. Her care there was funded by the NHS but after three months the funding stopped and she was pronounced fit to go home to her sheltered apartment. The problem was that she was clearly totally unable to live at home, even with carers several times a day, as she has deteriorated so much since the last fall, despite the fact that her shoulder had healed. We discussed the situation with my mother and she decided that she now needs to live in a care home as she really needs full time care. We approached the management with this in mind. The admissions manager made it absolutely clear that mother could only stay in that home if she had sufficient funds of her own to cover the full cost of the care for a minimum of two years. She didn’t have. She has about enough for about a year and a half. The fees are very expensive, £13500 a week. We were told we could act as guarantors for the other six months fees but we are unable to do this. The upshot was we needed to move her. We saw a couple of homes that frankly I wouldn’t put a dog in. My mother was not a wonderful mother, I think she has some aspects of narcissism to be honest, and I’ve written about our difficult relationship before on other threads about difficult mothers, but nonetheless I try to be a good daughter and I was not about to put her in a home that wasn’t nice. We found another home, a lovely home, but a little cheaper (as they had a special offer on) which means she can actually afford two years there. We arranged the move.
Half an hour before we went to collect mother this afternoon, a social worker, out of the blue, rang me, and was extremely cross with me because we are moving mother (who had agreed to the move herself.) Social Services have taken zilch interest in mother before this. She told she could have been able to negotiate a better rate for mum if we had wanted her to. A bit late now, I thought! She was quite aggressive with me, she clearly disapproved of us moving mum, even though I told her we can’t afford the current home. When we arrived at the home to collect mum, I spoke to the manager and told her about the social worker. The manager said she probably could have got the upper management to agree to mum having just enough money for just a year there and she had spoken to mother about this, but unfortunately mum didn’t tell us. So it seems mum could actually have stayed there and Social Services would have picked up the cost when mum’s money ran out. Anyway we went ahead with the move, and now mum’s really unhappy and says she wants to go back to the first home. I’ve been so stressed with all this, just wanted to unload really.

MissAdventure Mon 25-Oct-21 23:18:36

It's really not good enough that people are left to wade through a difficult system without any clear cut guidelines.
I'm sure it's deliberate, to try and squeeze as much as possible from the person whose wellbeing is supposed to be paramount in all of this. angry

Hithere Mon 25-Oct-21 23:27:44

Is your mother well taken care of where she is now?

You can only do so much. If I remember correctly, your mother wasnt happy no matter what you did for her?

Teacheranne Mon 25-Oct-21 23:48:48

Adult social care is a very difficult area to navigate, there seem to be hurdles at every turn, exacerbated by shortages in social workers to help with the process.

My mum has Alzheimer’s although with our support ( three siblings who are a very strong team) she lived independently with it for five years. We had reached the point when we knew what we could do, even with some help from care workers, was not enough but Adult Social Care totally ignored our requests for a social worker as soon as they knew she would be self funding.

Finally, after a fall just as the first lockdown started, mum was admitted to hospital and everyone looking after her agreed she could not go home. It was the hospital social workers who helped sort things out as otherwise mum would have been a bed blocker. Had she not been in hospital, I know it would have been down to us to get the right care for mum.

Luckily mum has enough savings, pensions and a house to sell so should be able to fund her care for the rest of her life, at a cost of £53,000 a year. Without funds she could not have stayed where she was as the home do not accept local authority paid residents.

It’s wrong though that families don’t get the support they need to help with the numerous meetings and forms to complete.

Sago Tue 26-Oct-21 09:01:01

I had to do this for my very difficult mother, because she had told so many people so many lies about me, I was always dealt with badly.
Not having POA made it even harder.

Firstly make sure you will not be charged “ top up fees” read all the paperwork carefully.

Are you aware you can claim attendance allowance to help towards the fees?

I had many sleepless nights over all of this, I feel your pain.

Jaxjacky Tue 26-Oct-21 09:14:17

maddyone sorry, but your mother is a bit of a trial, that’s being polite. You’ve done your best, that’s all you or any of us can do, your conscience should be clear. Yes, SS can be appalling, it’s so luck of the draw and shouldn’t be. Your mum wasn’t happy before, then she was, then she wanted to go home, then she didn’t. Like a demanding toddler there comes a point of enough, focus on you and yours. XX

silverlining48 Tue 26-Oct-21 09:27:18

If self funded always claim
Attendance allowance which slightly offsets the high charges.
Self funders subsidise those whose fees are covered by the council , because their contribution does not cover the full cost.

annsixty Tue 26-Oct-21 09:34:29

Please say those fees in the OP are wrong.
£13500, a week?

Smileless2012 Tue 26-Oct-21 09:44:40

Oh dear maddyone you've been through so much stress because of your mum over the years, finding a suitable home for her has also been stressful and now this.

It's a mine field. I remember how difficult it was arranging somewhere for my lovely step dad when his dementia meant he could no longer stay a home.

You have no idea what the situation may have been in a year's time if your mum had stayed. With such exorbitant fees (is that figure correct?shock) SS may not have been prepared to pick up the cost when your mum's money ran out, and she have had to have been moved anyway.

Your mum's always found fault, something to complain about no matter how hard you try. You've done your very best and can do no more.

I hope you'll be able to benefit from no longer feeling you have to be at her beck and call as she now has care around the clock.

Give yourself a break maddyone both emotionally and physically; you deserve itflowers.

silverlining48 Tue 26-Oct-21 09:45:14

Probably spot on, it’s shocking isn’t it.

silverlining48 Tue 26-Oct-21 10:08:14

Maddy I hope you can take some time to yourself. It’s exhausting and frustrating going through this. You deserve a break from the stress and worry. Do something that makes you happy and I wish you well.

maddyone Tue 26-Oct-21 10:34:34

Thank you for your kind responses everyone. I couldn’t sleep till gone 4.00 this morning as my mind wouldn’t settle. Yes to those who queried the price, the first home costs £1350 a week, and that was with a small discount I managed to negotiate. The new home is £1225 a week. Including her pension mum should be able to afford it for two years and a bit more.
As some of you acknowledge, mum has always been difficult, possibly in my opinion, she has some traits of narcissism. Through reading, I’ve discovered that the children of narcissistic parents constantly try to please their parent even throughout their own adulthood, as they constantly try to get the praise they never received as children. That probably is me. So her being so upset yesterday then upset me so much. Despite all she’s my mother and I’m trying to do my best for her.
To those who queried, mum already gets the attendance allowance, she’s had it for over ten years. I claimed it for her. Thank you for responses, Gransnet is such a great forum when people need support. Thank you.

maddyone Tue 26-Oct-21 10:39:44

I have to just add that I feel very angry over the social worker who phoned up yesterday and was so rude and aggressive with me. Anyone would have thought she owned my mother, and yet despite a referral to Social Services from the first home, and despite my husband getting in touch with them some six or eight weeks ago, they have failed to show one iota of interest in my mother until half an hour before she was due to move homes. And then they were annoyed with me!

MissAdventure Tue 26-Oct-21 10:45:09

Hopefully you will have an opportunity to put her in her place, maddy, at some point.
How rude!

maddyone Wed 27-Oct-21 10:27:48

I suppose it was only to be expected, but mum is now not happy in this new care home. I would never have allowed her to go anywhere that wasn’t nice, this one is classed as ‘luxury.’ I hope she settles down. Her negativity is amazing, but then she’s been negative all her life, so why change now. I do feel sorry for her, just because she’s old and losing control of her life, and for a controller all her life, that’s difficult.
Then we’ve got my husband’s parents. One in and out of hospital. Fluid on her lungs. They keep putting her on antibiotics and oxygen, then the infection goes, but then comes back, so more antibiotics. She’s 94 and a half. Poor old lady. DH’s dad is 94, frail, and unable to look after himself. He’s missing his wife, he can do little for himself. His other sons have to go several times a day to do everything for him. He has two care visits a day as well. We live 250 miles away, so can’t do anymore than phone every day, and with Covid, we haven’t visited as their area is rife with it. I had Covid badly (hospitalised 12 days) and daren’t risk getting it again.
Thanks for listening fellow Gransnetters.

Shandy57 Thu 11-Nov-21 00:22:37

Well done for moving your Mum Maddyone, best wishes to your Mum for accepting where she is and making the best of it. I had wondered what was happening after your 'two year's funds' announcement, and have done lots of research for myself since you first posted. My aunt is 84 and due to the distance I do keep in close contact with her, at the moment she still seems well and able to look after herself.

I sincerely hope the 'cap' of £85K for care does happen in October 2023.