I don't trust myself any more ....

[jasmineflower]

If it's any help my mother in law's nursing home dropped down on the CQC ratings quite considerably. However when I looked more closely you realise it was over some things that really were unrelated to the care they were offering. The staff are so caring and the people they care for all seem happy.

I would judge for yourself. From what you have said, the staff seem on the ball. If your mum is happy and the care seems good at all times of the day, then judge for yourself. The smartest places don't always offer the best care.

 

[Marnie63]

No, no, no! So what do I do now?

I tried really hard to see the good points about the home. The good points are that it has a quiet and calm environment, and the staff seem caring. But the bad points:-

Mum's skirt was back to front and her hair was really greasy. She has been there 72 hours - so it looks like they haven't washed her properly. Her denture tablets and pot had not been used, so no one has soaked her dentures (I did). I took her to the loo and she must have been bursting with the volume of stuff that same out! So, no one is prompting her to the loo, as I had asked. Her pad was dirty and smelly (I changed it). There was a strange toothbrush by the washbasin - so has someone been cleaning her mouth/teeth with someone else's old toothbrush? The loo was really dirty, in fact the whole room as not clean and the previous occupant's bits and pieces were still there (including on/in the loo!) There was a filthy plastic cup by the washbasin - has mum used that at all? - she wouldn't know it was dirty.

But the worse thing for me was that there were only two staff there for 12 residents. That can't be right - and a lot of the time I was there one of them was outside shouting and swearing to someone on her mobile, and I mean really swearing! So, when she steps back to her job, is she focused, is she calm? No, I don't think so. So, effectively, there was one carer for 12 and she was feeding someone in bed at the time - so everyone else was unsupervised (they all seem to have quite advanced dementia). If my mum wasn't still there I'd be straight onto CQC to complain, but I can't as I'm afraid for her.

So, what do I do now? Is this normal for a good care home? It all seems bad to me, apart from one of the care assistants, who I think (but don't know!) genuinely tries to do a good job.

I think I'm going to call SS tomorrow. But what on earth can I do - if I have her back, there will be no carer support at home this week as too late for arrangements.

Is it safe to leave her there for another week, in such an environment?

I swear we treat animals better than we do the elderly.

 

[Marnie63]

I forgot to add that mum had a sore bottom - I'm not sure if this is a pressure sore or not, but she said the skin was stinging so I rubbed some cream in. Maybe this is due to the lack of a wash?

Also, although she has an en suite, the toilet has no rails/raised seat, so she is struggling to get on and off it.

 

[canary]

I think she will be OK there for a while, although I agree, the things that you have said are not good. Its got to be better than being at home with no cover at all though! Speak to the manager about your concerns - pitch it in a reasonable tone and its more likely to get done. You can remove the dirty cup and take it down to the kitchen yourself for washing.

Start looking at the other choices. I think you said that there were a couple of private homes with good CQC ratings? Perhaps you could start there. Once you know where you want her to go then you can start negotiating with SS.

 

[jorgieporgie]

Marnie I have just read your posts and I was so upset for you that your unhappy about the CH. Sometimes the first one doesn't come up to scratch. I would start looking as soon as possible to find somewhere that will give you peace of mind. I am sure she will be ok for a week, as you say the staff are kind it is just they are short staffed and probably stretched to the limit. Keep positive and I am sure things will turn out right. Thinking off you xx

 

[Marnie63]

Thank you. The other thing that struck me was how much she had changed and deteriorated over the past 72 hours that she's been there. I had a long chat with a friend just now whose father had VD and she said that's just something that I will have to accept, as soon as she stops getting the excellent care and attention (and stimulation?) that I've been giving her, she will decline.

So sad, that even when we think we have found the 'solution' in a care home, we have to deal with such things ..

The dirty cup by the way was a plastic one which I threw straight in the bin!

 

[fizzie]

I tried really hard to see the good points about the home. The good points are that it has a quiet and calm environment, and the staff seem caring. But the bad points:-

Mum's skirt was back to front and her hair was really greasy. She has been there 72 hours - so it looks like they haven't washed her properly. Her denture tablets and pot had not been used, so no one has soaked her dentures (I did). I took her to the loo and she must have been bursting with the volume of stuff that same out! So, no one is prompting her to the loo, as I had asked. Her pad was dirty and smelly (I changed it). There was a strange toothbrush by the washbasin - so has someone been cleaning her mouth/teeth with someone else's old toothbrush? The loo was really dirty, in fact the whole room as not clean and the previous occupant's bits and pieces were still there (including on/in the loo!) There was a filthy plastic cup by the washbasin - has mum used that at all? - she wouldn't know it was dirty.

But the worse thing for me was that there were only two staff there for 12 residents. That can't be right - and a lot of the time I was there one of them was outside shouting and swearing to someone on her mobile, and I mean really swearing! So, when she steps back to her job, is she focused, is she calm? No, I don't think so. So, effectively, there was one carer for 12 and she was feeding someone in bed at the time - so everyone else was unsupervised (they all seem to have quite advanced dementia). If my mum wasn't still there I'd be straight onto CQC to complain, but I can't as I'm afraid for her.

So, what do I do now? Is this normal for a good care home? It all seems bad to me, apart from one of the care assistants, who I think (but don't know!) genuinely tries to do a good job.

I think I'm going to call SS tomorrow. But what on earth can I do - if I have her back, there will be no carer support at home this week as too late for arrangements.

Is it safe to leave her there for another week, in such an environment?

I swear we treat animals better than we do the elderly.

I think you should phone SS tomorrow and write down a list before you phone including your concerns about the pad and a sore starting to form - this is so NOT ok. I can't imagine that they haven't got a place in another home - they placed her quickly so this might have been the only option The staff ratio is what it is i'm afraid but the swearing and shouting on the mobile and the fact that noone was supervising is absolutely NOT OK and Social services shouldn't be placing anyone there - there are most likely fewer at night and the rest is completely unacceptable and probably won't change - how disgusting to leave your mum in a dirty pad, use someone elses tooth brush, dirty toilet etc etc - completely unacceptable. You could also give a list of your concerns to the care home manager if you felt up to it because others will be suffering the same kind of treatment or rather lack of care. It sounds horrendous, as soon as you get your mum moved then please do complain to the cqc.

I'm so sorry I thought you would get some rest xxxx

 

[AlsoConfused]

Marnie, when your Mum finds the right home you may even see an improvement in her functioning so please don't despair ....

We'd thought Mum had become only capable of managing a spoon, she's (currently!) using a knife and fork. That might be a small return of old skills but it's very welcome.

I'm sorry the temporary home isn't up to scratch. Your energy levels seem to be returning though and you feel better options might well be available. Good luck.

 

[Marnie63]

Fizzie - I plan to be on the phone to SS tomorrow. In fact, I'm so worried this evening that I might just go there tomorrow and take her home. It's not that I don't want to highlight my concerns to the home or to the CQC, but I don't want to do it while she's there. If the room is in that state and the care assistant was quite happy to shout and scream on her mobile for all to hear, then what's to say she's not shouting and screaming at my mum as I write this? It's very, very worrying, and it's exactly why I've been keeping mum at home all this time. I KNEW if I started her in a care home, somehow, it would be a disaster, and I've been proved right.

So, I feel I have to be careful what I say to SS tomorrow (can't even believe I'm writing that!). Because I guess the first thing they will do is ring the home and pass on my concerns.

Damn this disease and all the fall out.

 

[Marnie63]

And this was supposed to be rest and respite for me. Ha!

 

[fizzie]

Marnie You have to do whatever you feel is best. I am just so sorry because it sounded so nice on that first day and I thought you would get a decent rest and your batteries recharged.

The thing is that as alsoconfused has said, it doesn't have to be a bad experience, I am sure that this is so difficult and the home is not right because it was so last minute. It does sound understaffed for the level of need - hence the unclean environment. Perhaps if you do decide to take her home you could then go to your local carers cafe to get some info on the local care homes (word of mouth is always best) and have a look with the right checklist and you will be able to compare.

I would say try to get some sleep but it might be just one of those nights!! I am truly sorry, please let us know how things go tomorrow

 

[Marnie63]

Over my dead body

I've slept on it and am going to leave her there for at least a few more days. I've decided NOT to call SS yet as I don't want them putting any blockers in place for me to keep her there. So I will call them when I've got her out (sounds like prison!).

Today I am going to speak to the care agency to make sure I get home care back in place asap. I am also going to visit the three homes today which are all local, have won awards and have excellent reviews. I already know they are all full, but at least I can get her on the list, if all well. They do day care too, so between them, and the place where she is No. 3 on the list, I'm going to 'force' day care and get the care agency to provide the transport and chaperone, at least there. Probably a good idea for me to collect her to see how the land lies. I tried DC before, but was probably far too protective of her. This time I have to make it work as it will give me what I desperately need - time to myself in my own home.

One good thing out of this experience is that I can see immediately what can be wrong with a home, and now I can add a few more points/questions to my list when I visit others.

My mum, although 90, is a strong lady so I hope a few more days in this place won't damage her too much (after all, the other residents all looked OK to me). Of course I will visit each evening now to check on her, so at least I know once a day her pad will be clean. I might also take a bottle of toilet cleaner with me! You couldn't make it up!!

 

[marionq]

Marnie if you take toilet cleaner remember to take it away with you. Some months ago I had to empty my husband's shower room of everything but his toothbrush and paste after I found him in the shower clutching a bottle of bleach! He had t got it opened so I do t know what he planned to do with it but since then I take no chances.

 

[jorgieporgie]

Oh Marnie. I am at the end of my tether today from early this morning she is exhausted crying walking up and down shouting for her Mum. It is so distressing I feel physically ill. I desperately need respite but my fears of CH's is a reality from your experience and I feel Mum is so well looked after here I couldn't bear it been left like your Mum with dirty pads ect. Hate this disease what do we chose our health and sanity or our Mum's. I know all CH are not as bad it's just getting the right one. This should be your rest time, don't think we can ever have peace with this dam illness. Big hugs to you xx

 

[Marnie63]

JP - I'm so sorry you are having such a difficult time with your mum too. Do you have carers coming in to give you a break? Can you give her something like Lorazepam to calm her a little? I conceded to this med a while back as it helped my mum through some traumatic times.

It sounds like we are on the same page re care homes. I KNOW no care home in the world will be able to provide the care that we do, but given the choice of our health and our carees' surely ours needs to come first. Sadly, it's all too easy to say and hard to do.

I am definitely bringing my mum back home in the next few days, but I have to meet with my care agency today or tomorrow to know when they can get support back on line again. At least they are superb and the ladies now coming to mum couldn't do a better job - at least she gets one to one care with them. I wonder whether I might have to give in to a live in carer. As hard as it will be to have a stranger living in our home, at least mum will be properly cared for. Or, maybe the day care will work. Have you tried day care for your mum JP? Sometimes a change of environment might shift her out of her current state of mind?

You are right - we will never have any proper peace with this illness.

 

[LadyA]

I KNOW no care home in the world will be able to provide the care that we do,

You see - I would have, at one time, said that too. And like most, I was absolutely determined that my husband would never go into a nursing home (helped in that determination by the fact that I knew he had had a lifelong dread of nursing homes! He used to regularly shout that he "was NEVER, NEVER to be warehoused in some nursing home, where he would be doped up on drugs, so he'd just sit in a chair drooling!" - I think those fears came from memories of his own grandfather who died in the 1930s in the US in a nursing home and he had some form of dementia, but had I understand horrific hallucinations and was sedated a lot of the time. Anyway, I resisted a nursing home for William until his aggression and resistance to personal care, coupled with the fact that he wouldn't eat or drink enough at home, and getting his meds into him (he also had terrible hallucinations & paranoia) was a "challenge" - - meant his health was deteriorating dangerously. He wouldn't have survived more than another few months at home, at best.

So, he went to a nursing home. Where, to my surprise, he thrived and flourished. He loved having uniformed, male staff to help him - and it was I think, the uniforms that made the difference. We had had a male care assistant at home once a day, but he hadn't been uniformed. William also took his meds like a lamb, from the (uniformed) nurse. Because the nurse was giving everyone their medication - he wasn't being singled out. He ate and drank everything they gave him - why wouldn't he? The dining room was laid out like a fine dining restaurant! But most of all, I think it was the company - particularly the company of other men - that he enjoyed. Here at home, it was just me and him. And there was no way, with the best will in the world, that I could provide the level of care that all those staff could - but I will admit, his nursing home was extremely well staffed. There are kitchen staff, waiting staff (who bring a snacks trolley around morning and afternoon), care staff all over the place, cleaning staff, minimum two nurses round the clock in addition to the nurse manager, etc. And that's a small home - maximum around 40 residents. William lived happily there for eleven months until his death.

So I think it does depend on the nursing home - there are good ones out there. Just don't be panicked into picking one you aren't happy with. And if there's something not right, mention it.

 

[jorgieporgie]

JP - I'm so sorry you are having such a difficult time with your mum too. Do you have carers coming in to give you a break? Can you give her something like Lorazepam to calm her a little? I conceded to this med a while back as it helped my mum through some traumatic times.

It sounds like we are on the same page re care homes. I KNOW no care home in the world will be able to provide the care that we do, but given the choice of our health and our carees' surely ours needs to come first. Sadly, it's all too easy to say and hard to do.

I am definitely bringing my mum back home in the next few days, but I have to meet with my care agency today or tomorrow to know when they can get support back on line again. At least they are superb and the ladies now coming to mum couldn't do a better job - at least she gets one to one care with them. I wonder whether I might have to give in to a live in carer. As hard as it will be to have a stranger living in our home, at least mum will be properly cared for. Or, maybe the day care will work. Have you tried day care for your mum JP? Sometimes a change of environment might shift her out of her current state of mind?

You are right - we will never have any proper peace with this illness.

No Marnie I don't have carers as Mum is still mobile and I tend to her hygiene. I pay private for a carer on A Thursday for four hours just so I can go out with my SIL otherwise I would crack up Mum as been on lorazapan for the last month and it calmed her down, she does sleep at night now but the days are horrendous. I think the lorazapan isn't working as good now but she is only on half a tablet twice a day I think it wants upping. First time CPN coming this afternoon and Mum is settled looks like nothing the matter with her. See what they have to say and Il let you know later. Hope you get things sorted soon. xx

 

[Marnie63]

Progress on care homes

JP - just a thought - I filmed some of my mum's 'episodes' on my mobile when she was really bad as I also found that as soon as a stranger stepped in the door, she calmed, and you'd think things were OK. I never had to use the stuff I filmed though, and I deleted it, as it was so awful.

Well, I think I've made some progress. The home(s) I went to see are local, around 11 miles away. I think I spent about 3 hours there! There are two homes side by side, one is larger, around 56 residents, and is a nursing/dementia home. It's very impressive. This is the most expensive (over £1,000 a week, but I was kind of expecting that). They have another, smaller, home next door which is a care home but without nursing (though the nurses from the larger home do pop over if need be). This one is under £1,000, I think that is probably where mum would go, if she goes there. It's good that people can transition from one to the other, as required, and those already 'in house' get priority when they need to move to the nursing section. Everything is included in the cost except hairdressing and hand nail care (including outings and events). They also have an 'end of life' section (which they didn't offer to show me) and a day centre, which is run daily, charged hourly, and is run separate from the home, though in the same building. They also have a third 'campus' down the road, which I ran out of energy to view! I really, really like this place. It's like the Ritz compared to where mum is now. As for staff, well I was told there are 15 carers on at any one time, plus the nurses, admin staff, managers, etc. We bumped into one of the owners of the homes and he spent ages telling me about it and how proud they are of their staff and all their accolades.

Interestingly, this home also mentioned that they have some kind of 'charity' arrangement that if, after residing there for three years, your money starts to run out, you can apply for charitable funding via their scheme to top up your fees, so that you don't have to move to another home.

So, now I have her on two homes' waiting lists and tomorrow the first one will call me with an update as they are 'reviewing' their waiting list. Both do day care, and I think I have to get mum to this now, however much she may protest. As the dementia progresses (which it seems to be doing very quickly) then the protests may be fewer.

Feel much better, but still need to go to that awful place tonight, with some bleach and toilet cleaner in my bag! The dining atmosphere was so different where I was today - they group people by 'eating ability' in the nursing home and there was certainly a lot of assistance going on at meal times - I saw at least three care assistants helping residents with meals, and there was a bit of a 'buzz' around the place, compared to complete silence, and no assistance, where mum is now.

I'm going to pop in every evening now until I 'spring' mum from the current place! If I find that she's OK, then will leave her there for the next day. I plan to get her out over the weekend. Just a few more days to get myself back to some kind of normality, before I start back again. But, I now have potential back up help in the form of two care home places on the horizon, and by the time they come up, it probably really be crunch time and time for a care home for mum. We shall see...

In the meantime, home care restarts next Monday!

 

[LadyA]

And the fact that you now have hope, you have taken steps to ensure you don't fall off the edge - that in itself can make all the difference. xx

 

[jorgieporgie]

JP - just a thought - I filmed some of my mum's 'episodes' on my mobile when she was really bad as I also found that as soon as a stranger stepped in the door, she calmed, and you'd think things were OK. I never had to use the stuff I filmed though, and I deleted it, as it was so awful.

Well, I think I've made some progress. The home(s) I went to see are local, around 11 miles away. I think I spent about 3 hours there! There are two homes side by side, one is larger, around 56 residents, and is a nursing/dementia home. It's very impressive. This is the most expensive (over £1,000 a week, but I was kind of expecting that). They have another, smaller, home next door which is a care home but without nursing (though the nurses from the larger home do pop over if need be). This one is under £1,000, I think that is probably where mum would go, if she goes there. It's good that people can transition from one to the other, as required, and those already 'in house' get priority when they need to move to the nursing section. Everything is included in the cost except hairdressing and hand nail care (including outings and events). They also have an 'end of life' section (which they didn't offer to show me) and a day centre, which is run daily, charged hourly, and is run separate from the home, though in the same building. They also have a third 'campus' down the road, which I ran out of energy to view! I really, really like this place. It's like the Ritz compared to where mum is now. As for staff, well I was told there are 15 carers on at any one time, plus the nurses, admin staff, managers, etc. We bumped into one of the owners of the homes and he spent ages telling me about it and how proud they are of their staff and all their accolades.

Interestingly, this home also mentioned that they have some kind of 'charity' arrangement that if, after residing there for three years, your money starts to run out, you can apply for charitable funding via their scheme to top up your fees, so that you don't have to move to another home.

So, now I have her on two homes' waiting lists and tomorrow the first one will call me with an update as they are 'reviewing' their waiting list. Both do day care, and I think I have to get mum to this now, however much she may protest. As the dementia progresses (which it seems to be doing very quickly) then the protests may be fewer.

Feel much better, but still need to go to that awful place tonight, with some bleach and toilet cleaner in my bag! The dining atmosphere was so different where I was today - they group people by 'eating ability' in the nursing home and there was certainly a lot of assistance going on at meal times - I saw at least three care assistants helping residents with meals, and there was a bit of a 'buzz' around the place, compared to complete silence, and no assistance, where mum is now.

I'm going to pop in every evening now until I 'spring' mum from the current place! If I find that she's OK, then will leave her there for the next day. I plan to get her out over the weekend. Just a few more days to get myself back to some kind of normality, before I start back again. But, I now have potential back up help in the form of two care home places on the horizon, and by the time they come up, it probably really be crunch time and time for a care home for mum. We shall see...

In the meantime, home care restarts next Monday!

You sound a lot more positive Marnie, If you know you can get her in day respite until there is a place that will give you a bit more time to re-charge. As predicted Mum was the perfect host today with the CPN. Good job they know what to look for. Got her another appointment for the 20th and they are going to ween her of lorazapan whilst giving her an antidepressant. Will not give her phycotic meds as she as vascular disease and a pacemaker. Lets see how it goes, she as been asleep in the garden today under the sun shade so I got a bit of well deserved sun bathing.