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Former carer because my mother has entered residential care - Carers UK Forum

Former carer because my mother has entered residential care

For anyone who is bereaved or no longer providing care.
If only!!!

My 95 year old mother, who is completely blind, reluctantly entered respite care in January 2017 for 3 weeks whilst we went on a well-earned holiday. On our return she took several days to decide that she would stay in residential care. She didn't want to look around any other care homes and was keen to stay in the respite care at her own expense. She had been unwell for the 3 months prior to respite care and had a period of 10 days in care when her eyesight failed completely. She had lived in sheltered accommodation with carers coming 3 times a day and my care the rest of the time. However, Adult Care in Cornwall would not assess her for respite care at such short notice - she only agreed to enter care 3 days before we were due to go away and I was on the point of cancelling our holiday.

There were issues with care at the home which gradually came to light eg taking mum's call bell away, Leaving her on the toilet or commode for ages and not giving her a bell to call for help when she'd finished. Getting the GP to prescribe antidepressants and sleeping tablets without informing us a family that she was having problems etc Basically excluding us from her care and taking away her choices. 15 months later she was asked to leave the care home. We were given only the reason that her lack of mobility made it difficult for the care home to meet her needs. Neither me nor my mother were informed by the care home, Adult Care broke the news to us over the telephone. We spent the month's notice visiting home after depressing home and finally decided on one that seemed to be pleasant and have caring staff only to be told by Adult Care that it was £50 per week too expensive. All the other care homes they had suggested were even more expensive so they wouldn't have liked those either. However, after some persuasion they agreed the funding and she moved on 26 February this year.

She's now in a new care home and her mental health and mobility has deteriorated since the move. She now can't walk or transfer independently. She's been put on new drugs but is hallucinating and hearing voices. The present care home have asked us to look around for a new care home as she's disturbing another resident at night! She's had at referral to the Community Psychiatric Nurse who seems to be on the side of the care home saying that they can't meet Mum's needs. However, the new drugs might take 6-8 weeks to work so it doesn't seem fair to move her again without waiting. Mum is terrified of the voices and the hallucinations and it breaks my heart every time I visit and she pleads with me not to leave her.

I have a sister who has failed to help for the last 18 years since my Dad died and my husband and myself have cared for Mum in all that time. If I ask her to come down whilst we go away it's rarely convenient. She asks if she can help and I finally got her to make a phone call to the CPN today. Guess what, the CPN was busy so she left them my number to call back!

I haven't been able to sleep properly for several years now, I was diagnosed and medicated for high blood pressure last year and I feel at my wits end. The thought of having to trawl around care homes again and make mum move again fills me with despair and sadness for my mum. Where is going to provide care staff to sit and hold her hand 24 hours a day and reassure her that the voices and people trying to kill her are not real?

Residential care is not the end of caring, it's just different - different hoops to jump through - 2 sets of financial assessments within 3 months, still the problem of trying to get mum involved in her care decisions - she still has capacity to decide apparently but no one will take her opinion into account! Or mine as her advocate. Can anyone help or have ideas about who to call at 3am?
Hi Diane
Of course you are still a carer, not eligible for carers allowance but definitely still a carer. :)
First and foremost the sudden onset of hallucinations needs investigating. It's often caused by infection, especially Urinary. Once the infection is found and treated the hallucinations go away. It may not be the case but is worth investigating, if only to rule it out
Secondly at 95 (which my Mum, in a Home, is) deterioration can be sudden and rapid. Less than a year ago Mum was out walking in her own. Now she's on a zimmer. A few months ago she was ok with money, now it confuses her and we've had to take her bank card and cash away.
Thirdly I have no answers, but huge amounts of sympathy and empathy. The frustration between no longer being in charge but stilll involved and loving and being caught between the Home and Adult Care is really stressful. If the ideal home exists with 1 to 1 care it would cost at least £150,000 a year, probably more. No easy answers, sorry

Thanks for your reply.

Yes, we've done the infections route, nothing turned up in blood or urine tests. Going to see Mum today, hoping it's a good day for her.

My sentiments exactly, that there isn't any care that will relieve Mum of her anxieties and fears. She's not afraid of dying, we've had many conversations about mortality. Except that she doesn't want to die alone and that's one of her fears - that I won't be able to get there in time.

I suspect that Mum will end up coming to live with us, something she has steadfastly refused to do so far. We had both my maternal and paternal grandmothers living with us for many years when I was a child up to the age of 18. Mum didn't want that for us, but I can't watch her be terrified for the rest of her life, however limited that might be. I think my sister thinks she's making it up and playing me for attention. She doesn't behave in the same way when my sister makes her occasional visit, but I think she knows that my sister wouldn't put herself out anyway so it's irrelevant.

Another day . . . .
Diane it could be worthwhile asking your Mum's GP to check and review any medication - some medications can cause hallucinations as I know from experience with my own Mum.
Diane, there is no surety that if Mum did move in with you that she would stop hearing voices and hallucinating. Could you really cope with that 24/7 in your own home (no need to answer just think about it)
Also if Mum is fully funded then really she is Adult Cares problem to find and fund a Home
. If you bring her back to you, in a way it lets them off the hook both financially and responsibilty-wise.
If she came to you then needs residential again in the future it might prove every difficult to get as Adult Care might view it that you were 'trying to be rid" etc. At the very least they'd drag their heels...

Also, any move anywhere, even to you, is likely to result in further deterioration, the very elderly just cannot cope with major changes.

I do understand your wish to make her comfortable but do be aware of potential pitfalls. She may go on, and carry on deteriorating for many years yet

Food for thought, no need to answer publicly

Or send her to live with sister!