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Newbie.....Long Post! - Carers UK Forum

Newbie.....Long Post!

Tell us a bit about yourself here.
Hello, I'm Karen I'm 55, have a sister who is 53 and a brother who is 43.
Over the past 18 months my mum, who is 79, has become frail and has very bad mobility.
This began with her having 'funny turns' a few times whilst out with her friend, these were happening when she stood from sitting.
Eventually I persuaded her to go to the Doctor who referred her to the hospital, eventually she was diagnosed with POTS ( Postural Tachycardia Syndrome ).
She began to have numerous falls, and become unconfident in going out.
She then became came quite stooped and her mobility was going down hill fast, she doesn't have a shower and has been unable to bathe for over a year, she strip washes as best she can.

I got in touch with Adult Services who eventually came out and did a assessment, this resulted in mum being given various aids to help her round the house along with a Care Line being fitted, she also now has a Blue Badge.

Over the past few months things have deteriorated , her mobility has become much worse, her speech at times is quite jumbled/slurred, and when she tries to move her feet sometimes she can't even though as she says her brain is telling her too.
On our last visit to the Doctor at the end f September, he again referred her to the hospital, my understanding is this time she will be assessed for Parkinsons.
She lives alone, we all work but do as much as we can for her, housework, changing and washing bedding, shopping etc.,

On Thursday she had a had fall in the garden where she cut her head badly, the neighbours rang us (she couldn't reach her care line button as had fallen on her arm too ).....my sister and I left work (we both work for the same business) and met the ambulance at A&E.

They eventually cleaned her up, and on finding the wound found there was a haematoma in it, which when they removed it caused fresh blood to spray everywhere.....they were intending to send her home as long as one of us stayed with her......they then stitched the wound saying "hopefully that would hold any fresh bleeding".....at this point my sister and I decided we would feel happier if she stayed in.........we both felt so guilty as she's our mum and we should be looking after her, however the Doctor was quite happy for her to stay and a bed was booked within minutes....with us still feeling guilty!

When the nurse came to move mum from the bed to a chair to take her to the ward, mum could not move her feet ( which as I said, happens)....it took 3 of us to eventually get her into the chair, a porter took her down to the ward, telling the nurse there that it was a 2 person transfer.....well mum became very slumped in the chair and completely zoned out...even the nurse looked concerned and kept calling mums name all mum could reply was "yes"....eventually they got her onto the bed and she became more coherent .

I told 2 members of staff about the POTS and other conditions mobility/zoning out/speech and the Apt., she has with the hospital in November, none of this seemed to written down or passed on. Yesterday afternoon a gentleman rang me from the hospital ( I think he was a physiotherapist of some kind) asking if mum could walk up stairs before she came in, which she could, with the help of rails either side, he said, she now appears not to be able to walk! he said mum had agreed to go to a community hospital for a few days, I again explained everything to him ( he was not aware of the facts so obviously they hadn't been written down ) he said, this information made sense as he had saw evidence of these thins whilst with mum, and that a diagnosis was needed, he said he was not allowing her home and until a bed could be found in a Community Hospital she would be staying where she was but I would get a phone call letting me know.

3 hours later and no phone call, I was at mums gathering more things for her, rang the hospital to find she'd been moved to another ward.
On getting there, discovered they had no record of what had been going on either!......so had to yet again relay the information.
Neither I or mum could remember the name of the physiotherapist!

My sister and I are feeling so guilty, its breaking us, we don't know what is going to happen when mum comes home, she is obviously going to need more care!.........Oh where was our brother....he went horse racing!!....and hadn't, yet, been to see mum!
Hi Karen,

Welcome to the forum.

I'm sorry to read about what is happening to your Mum. What a worrying time for you all.

Get a book from now on and use it to note down the name, date, time and brief synopsis of any phone calls or face to face meetings, assessments or appointments concerning your Mum. Then it's easier to make professionals accountable.

Carers UK have advice about hospital discharges and post discharge care: http://www.carersuk.org/help-and-advice ... f-hospital

As for your brother ... Sadly a lot of carers have relatives who like him, show little interest.

Thank you for your reply, mum is now in a Community Hospital, she was moved there yesterday afternoon, its not local to us, being 17 miles away, but unfortunately was the only bed available, she didn't seem too bad when we saw her last night. But as she had only been there a couple of hours didn't really get chance to talk to staff other than to give them contact details.
Your situation must be very difficult for you too, take care.