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How long is the wait for a care package? - Carers UK Forum

How long is the wait for a care package?

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Okay I know this is a how long is a piece of string question but is there something else I should be doing?

Mum has an Alzheimer’s diagnosis, confirmed in January 2022. Gets higher level attendance allowance. Has a self funded carer once a day. I have POA for finance only, for whatever reason mum didn’t do health and it’s too late now. Doesn’t want to go into a care home but capacity is waning - for instance we had an absolute drama recently when she told me a very plausible story about a man in her bed which meant a Police scramble to check her out as a vulnerable adult. Thinking about it I was told that was going to be reported to SS but don’t know if it was.

Mum fell at home on Saturday 23rd July at 9.30am, found by the carer just before I got there, Paramedic came, was excellent, took loads of details, then another two arrived as it took three of them to get her off the floor. Off to hospital, Dr rang at 7pm to say she was being admitted to check her out. He too was excellent, Eve pan set up the TEP with me over the phone. Anyway she is still in hospital.

She will surely be self funding long term as she has savings and so I sounded out a nursing home close to me, went through all the checks etc, as I had no info from the hospital over the weekend, so I was prepared if we needed it, maybe respite or recuperation.

I’ve been told by an OT that she doesn’t need a home (okay, I get that) and that she can go to her home when they have the Urgent Care Package sorted, that will be a carer four times a day. I reminded the OT that mum hasn’t had a shower, washed her hair for months, and uses her electric toothbrush without turning it on or using toothpaste (I only found all this out the day before she fell), and the OT brightly told me that mum would be fine showering at home in her wet room. I pointed out that she doesn’t have a wet room. The OTtold me that mums home was easy to get around, I told her there is a step between every room, and the stairlift only goes to the first floor, it is three stories. She suggested mum used a zimmer downstairs, I suggested that she actually doesn’t have the strength to lift a zimmer up a step! They are listening to a person with Alzheimer’s tell them her version of reality, for all I know they might think I spend all my spare time with my mum, instead of the reality which is seeing her once or twice a week fitting around work and home, with a daily phone call to her.

I haven’t been in this position before, I want to do what is best for my mum, and I really want to be sure that through false information being assumed correct from mum that she doesn’t end up in a dangerous situation. Before she went into hospital she was struggling (had forgotten for instance that you could put bread in the toaster), but she could still heat her lunch, make tea and coffee, clothes in the washing machine etc. I fear that having been in hospital for 12 nights so far she will lose all ability, even for the basics.

Please, what do I need to do next, what am I missing? How do I get the hospital to understand that she is probably hostessing brilliantly and just saying whatever comes out of her mouth first. When I saw her on Thursday she thought I was a carer, as she’s struggling ti recognise her only close relative we are in trouble (both of us are only children).
It varies from area to area. Maybe ask for a private occupational therapy assessment.
Thank you, do you mean pay a private OT to see her once she’s home?
I completely forgot to add the other spanner in the works - at the weekend I tested positive for covid. Today I’ve lost my sense of smell and my vision has gone off kilter, and I’d course I am feeling hellish guilty because I just cannot visit mum.
It's usually fairly quick to get a package in place if it's urgent, but the current shortage of workers is affecting things everywhere. My concern is that the OT needed to be sure of her facts and it's clear that your Mum was very plausible. They have a duty to listen to you on this matter and it seems to me the first thing you might need to do is question your Mum's capacity to make a decision about going home, pointing out that her version of life at home is far removed from reality.

At one time, OTs used to take the person home and check to see what problems might need to be worked around: that went by the board with covid. That said, it's important for them to look if they really believe your mum over you. Using the words "unsafe discharge" might help.
Thank you so much Charles, very much appreciated.
You are going to have to be VERY tough with the hospital.
I had a terrible battle with the hospitals mum was in a various times.

From what you describe, mum is never going to be fit to go home again I'm afraid.
You need to Google "NHS Continuing Healthcare Grogan" and read about a case involving someone with dementia. Mum may not be severe enough yet to qualify, but it's important this happens now to give a later "benchmark".
Have the hospital done a brain scan to determine whether it is or isn't dementia, and if so, what type.
I'd insist on this.

You do not have to sell mum's home to pay for care, there are other options to explore.
Does mum own her home?
How old is mum?
Are you an only child?
If mum went into hospital, would you like to move to her home and sell yours?
Hi bowlingbun, thank you for answering.

Luckily I am a strong woman 🤨 I’m just coming from a point of little knowledge, and this all feels a bit ‘you don’t know what you don’t know’. I find this forum so helpful.

I’ve bookmarked the Grogan case to read and pull together some info to back me up.

She missed the brain scan (because the hospital rang her but never sent a letter, and I had no idea what ‘tuesday9.45’meant 🙁) but was assessed by the Older persons MH Team, I was there too, the diagnosis, which I have in writing, is dementia, Alzheimer’s. That was January 2022, and she went onto Memantine, an increasing dose to the 20mg she takes now. I don’t know if the hospital have changed her meds, and of course without the health POA they may not tell me anyway. I wonder how much common sense approach there is when there is only one next of kin.

Mum owns her home and has savings over the threshold.

She is 84, and is an only child. I am her only child too, her husband/my dad died ten years ago. I am married and live with my husband, no children. We definitely would not want to move into her home. I don’t know what the legalities are, but if allowed and if she goes permanently into residential care we would like to rent her house out to give her an income to set against the CH costs.
In that case, do everything possible to claim CHC, which would give entirely free care.
Is mum receiving Attendance Allowance already?
Are you now claiming exemption from Council Tax due to severe mental disability, ie. dementia?
Be sure to claim, it's easy to do so.
Thank you, because of this forum (probably you!), I did the Attendance Allowance and she was awarded the higher level around £92pw, and I did the Council tax and that has stopped and been reimbursed I think (must check).

I will get to work on the chic, thank you so much.