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Emergency Respite - a cautionary tale! - Carers UK Forum

Emergency Respite - a cautionary tale!

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I've been meaning to post this for ages. I'm not sure if it will help anyone, but maybe it will. The message here is loud and clear - even if you are at your wit's end and desperate for a break from your caring responsibilities, be very careful what you wish for, and be careful to check out the 'credentials' of the place you are taking your caree to.

I have been caring for my mum for many years, but last October she suddenly got dementia. That in itself is a very, very long story, and I shared some of it on this forum as it was happening, but the short version of it is that she suddenly became very confused, and went into hospital. She was in hospital three times and many tests and opinions later, was diagnosed with Vascular Dementia as they found signs Small Vessel Disease on her MRI scan. I had been kind of coping OK, with carers coming in regularly to give me breaks and help with her washing, etc., but around a month ago I had a serious meltdown of my own which led to me calling Social Services and asking for urgent help, as I was no longer able to cope with mum's behaviours (very confused, talking nonsense most of the time, delusional and paranoid). To the credit of SS, they found a room in a 'care' home within a couple of hours and I confirmed that I would take her there and with the help of a kind neighbour we drove her there. To be honest, I was so very, very on the edge that I didn't think to check their CQC report or really inspect the place in great detail, I just needed a break, that was the key thing. I did pop up to have a look at the room, it was large and had an ensuite. It was a bit shabby, but looked OK generally and the staff seemed fine. It was a small home with only 12 residents. I did the paperwork and left.

After the first few visits to mum to bring her more clothes and generally check all was well, here's what I discovered:-

- The room had clearly not been cleaned after the previous occupant. There was a very dirty cup in the bathroom (which mum may, or may not have used - ugh!) and some bits and pieces of someone else's toiletries. The toilet bowl below water level was black. I took my own cleaning stuff in and got it clean in minutes. Mum was in the home for 10 days and I saw no sign of cleaning in that time. The bath had scum rings around it. It was disgusting.
- the light in the bathroom wasn't working
- mum was left in dirty pads
- the used pads were left in the bin for days on end - I had to remove them myself in the end and hand them to someone to be taken away.
-bin in room was not emptied for days on end
-there was no hot water!!! Mum was actually not washed by the home in TEN WHOLE DAYS. After six days she was begging me for a wash. It was that period of really hot weather. She was dirty, smelly and her hair was greasy. I decided to get her to step into the bath and I would hose her down with the shower attachment. But, sadly, the shower attachment didn't work. So I decided to give her a bath. But there was no hot water. I went and asked for hot water. One of the care assistants told me she would switch the immersion heater on! (I suspect they only heat the water once a day, to save money, I never managed to get any hot water out of the taps during the 10 days she was there, at best it was luke warm). Eventually, by around 11pm, I managed to get mum into a luke warm bath. I had to get someone to help me lift her out. But, she was clean!
- the following day I was told by one of the care assistants that the manager had asked that I didn't visit so late as it was "upsetting the other residents". I didn't see any other residents by that time, they were all tucked up in bed. More likely, they were angry with me as I was beginning to discover what kind of a home this was!
- there was no toilet paper in mum's bathroom one time that I visited
- she struggled on and off the loo as there was no raised seat
- she told me that when they had to use the 'public' loo on the ground floor, they were unable to lock the door as it was jammed open. They had to wee in full view of everyone. How sick is that? And that downstairs loo STANK!
- No one saw or felt fresh air - there was a garden, but the staff were care assistants, cooks and cleaners, all rolled into one, and didn't have time to supervise anyone going outdoors.
- The food was disgusting - really cheap stuff, all frozen and tinned.
- I discovered by accident after three days that they had got a GP in and he had prescribed antipsychotics as mum was not sleeping at night! I was furious about this. Not only did they not check with me, they didn't even bother to tell me. She didn't need antipsychotics - she was in a strange place with dementia! The manager had a go at me for saying mum was sleeping through the night. She had been - and still is - without the aid of any, unnecessary, antipsychotics.

Had I known that mum would end up in such a place, I would never have called SS to help me. It was absolutely horrendous. I have called the CQC and will be putting in a formal complaint very soon. The place should be shut down. Sadly, most of the residents have no idea about anything any more, far more advanced in their dementia than mum - but who is looking out for them?

One good thing came out of all this though - I had a chance to visit a few more care homes (proper care homes that is!) and have now found a great place, not far from home, where mum is now going to day care. This place has the full works - day centre, residential, nursing and end of life. I am going to try to carry on at home for a bit longer. That 'care' home has given me nightmares. Mum, fortunately, has forgotten about it (in this case, one of the good things about dementia!). BUT, if she ever needs to go into one permanently at some time in the future, I have reached the point where I don't really care about the cost any more - I would rather pay the £1,500 or so a week to have her in a place which actually seems to 'care'.

Be very careful if you have to find a care home place in an emergency like I did - at the very least check the CQC report quickly and have a good look around the room. The CQC report, unsurprisingly, tallies with my experiences. One of the care assistants told me that the owners run another home in a nearby town. I found the details of this other home on the CQC website as well - the last report is very similar to the home mum was in. Of course most of the issues above did not become apparent until I had visited a few times but, dear God, how can people be treated that way? It's just horrendous. Mum will never, EVER, go to a place like that again. Over my dead body ...
That's ghastly! What an appalling place. Why is it still open for business??????

Glad you've been able to escalate this to the Care Quality Commission lot, and I hope they take some decisive, prompt action.

As you say, the dreadful thing is that clearly the rest of the residents can't 'escape' - do their families really not care?? Or if they don't have any.....

Glad you found a (much!) better alternative. Personally, I think one that is further away but better, is better than one that is closer but worse (if you see what I mean.) After all, the whole idea of respite is to give CARERS a break, not having to go in and out all the time.

Hoping you can book your mum in again for a much nicer respite experience very soon.