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Newbie needing advice re hosp stay / capacity - Carers UK Forum

Newbie needing advice re hosp stay / capacity

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Hi I'm new to the site and would really appreciate some advice. My mum in law has been in hospital for 4weeks (will be tomorrow). She was admitted with UTI and confusion. She's 87 and I am her main carer (5 hours per day) and she has 3 care calls arranged by social services.

She is my partners mum and he has an older sister and younger brother who do very little in the way of care / support. The two of them have always wanted both of their parents to go in a home and this happens at every opportunity / any hosp stay or infection. Our belief is that they are driven by financial gain and as a result my partner doesn't speak to them unless it's about / or in front of his mum and dad. Their dad is now in hospital with end stages of dementia and mum misses him terribly but she wants to remain at home.

The problem ..... Within a few days of being admitted the confusion caused by UTI cleared, but my sis in law had told the hosp that her mum had dementia although she has never had a diagnosis of this. The hosp did a CT scan which showed 'slight cognitive issue' and then started a capacity assessment. I believe her memory has declined slightly and coincides with her warfarin dose being increased.

The assessment has been ongoing for all of this time with a change in the person carrying it out part way thru and whilst it has been happening she has had 4 different beds on the ward which has confused her. She is now experiencing delirium from the strange environment. She is registered blind, wears two hearing aids, has a pacemaker and takes warfarin.

At home she is very socialable and goes out most days,cleans her own home irons clothes etc but in hosp she is crying to come home and is rapidly going downhill as she is now alone in a side room, and this does not give an accurate view of her capacity.

Her daughter asked the staff to keep her in hosp as she wanted to put her mum in a nursing home - and then went on holiday for 10days!! Whilst she was away we met with the hosp - and my partners brother. We explained that when she comes home we will be staying with her for as long as necessary to make sure she is ok at home (we have done this a few times for both of them over the last 3years for up to 3mth at a time and we are completely happy to do this. We don't want to move in - we have our own home but want to support her to stay in her own home). I have been her carer for over 12mth and she asked me to do this.

We explained that she wants to come home and the Dr said 'we don't know if she has capacity to make that decision'. My understanding is that the MCA states you must assume someone has capacity unless it's proven that they don't. Although she's saying odd stuff she knows where she is, can make menu choices, asks about husband, new grandchild, our dogs etc so clearly has some level of understanding.

We are waiting to have a new meeting with my partners sister BUT now is brother is going on holiday for 2weeks!!! It's heartbreaking to see her like this. She's missing visiting her husband and being at home. We don't object to the capacity assessment but don't believe that she needs to be in hosp for this to be carried out.

She is medically fit according to the Dr. If she wants to can she / we self discharge her ?? She will be safe as we will be with her. I'm not sure if we can as the assessment has started OR if this is ok as her not having capacity has not been proven so then it must be assumed that she has.

Help really appreciated. We don't want to do anything reckless but are trying our best to carry out her wishes.
Hi, I myself don't know about the specifications of assessing dementia (my MIL has it, and 'everyone' just accepts she has, as it's 'de facto' she can't look after herself and is is in a home), but I know others here do know a lot more than me. (For example, as you probably know, UTIs seem to exacerbate mental confusion, which can possibly clear once the infection is gone)

All I wanted to say - other than welcome to the forum! - is that if think the motiviations of your BIL and SIl for putting their mother in a care home is fundamentally for their own financial gain, I think they may not quite understand the situation!

If your mother has savings, assets or property worth over £23k then she will have to pay ENTIRELY for her own care in a care home - and I can tell you that my MIL is currently burning through the proceeds of her flat that was sold two years ago, at the rate of a hundred pounds a day! That's around £35,000 a year! She will be broke in a couple of years, and then the Local Authority will have to pick up the tab.

So if your BIL and SIL are thinking 'Oh, we can put our mum in a care home and then sell her house and get the money!'....well, forget it. It will go on paying her fees....and anyway, it's still HER money/property, until she dies, whether or not she has dementia!

So, actually, if they want to get their hands on her estate, not only will they have to wait till she dies, but the best way to conserve her estate is to let you and your husband look after her yourself - LOADS cheaper! (That said, actually, you MUST 'pay yourself' for the care and expenses you are going through on her behalf.)

I hope the situation works out for the best for your MIL, and for you and your husband (but not necessarily for what appears to be a pretty uncaring BIL and SIL!)
Thank you for ur reply.

Yes they definitely have a different view than the rest of us. It's been a long time view of theirs. Originally sadly with my father in law (who in their view needed a home 'as he is was a nuisance'. Arrrgh he has dementia!! More recently about 3 years ago with mum in law 'well you will have to go into a home if u are having a bunion op as you can't walk upstairs for 6weeks'. Solution - we created a downstairs wet room and stayed with them unless she had recovered!!! Last year after her emergency pacemaker 'where's she going to live when she comes out, she needs a home'. We couldn't keep her still when she came out of hospital!!!

As you say she will have to self fund, and yes we know that but they think they can sell the house etc - even thou it's in joint names with her hubby they just think 'as he's not coming home it's all their mothers!! They don't think thru the maths just got pound signs which is terribly said.

Her daughter has already said 'I'm not prepared to put my life on hold to look after my mum and dad' and when we suggested a rota after the bunion op my partners brother said 'don't put me on any rota I'm not getting involved in all that'.

Anyway thanks for your reply I appreciate it and if there's anyone out there who has similar experience of discharging someone from hosp mod capacity assessment is really appreciate someone else's view point. I can imagine the family backlash will be bad enough if we do it, will be worse if we do I and we shouldn't have!!!
Hi Tracey,
What a difficult and ridiculous situation, how worrying for you and your partner and how unfair on your MIL.

You are quite correct in your interpretation of mental capacity. Someone is assumed to have it unless they are proved to lack it. The tricky bit is they can be deemed to have capacity in some areas but not in others. However, unless they are proved not to have it, they cannot be prevented from making decisions even if they are considered to be unwise by others.

How bizarre that the hospital are in effect blocking their own bed! Of course your MIL will perform better and be less confused in her own surroundings. Perhaps you should play this all with an I'm so reasonable hat on and call their bluff. I.e explain you are totally in favour of a MC assessment, that you are fully supportive of this continuing once your MIL is at home, etc and that it if she is foind to lack MC then plans can always be made for residential care later down the line.

In the meantime, contact Age Uk or similiar to get advice and push for an advocate for MIL, who will listen to her and support her requesting to stay in her own home.
http://www.nhs.uk/conditions/social-car ... vices.aspx


I suggest you contact Age concern for advice
Thank you, thats what we have been discussing doing, and we clearly don't have an issue with MC assessment. Wer not in denial re her possibly having dementia but I don't find it difficult to deal with. Clearly not easy and not saying that lightly but I've known them for 16years and her hubby has had vascular dementia for around 10years. My SIL and BIL don't know how to communicate with them and find it irritating that they have to say have the same conversations over and again, I don't. After all it might happen to us all one day!!
The point is we dealt with that, dealt with his Dr constantly throughout and sadly even had to agree to him being sectioned as he become aggressive very very quickly. However until that point everyone agreed best place for him was in his own home so I don't think it would be much different for a new diagnosis.
Part of me thinks sit it out and wait to see if she has capacity then take her home, the other thinks prob impossible to overturn if they say she doesn't and we will always wonder if the environment has played a part in the confusion. she was in hosp last year for a while and we had never seen her with delirium. We actually refused to being her own then when they said we could as we wer convinced something was wrong, but when we did take her home it eased within a few days, and shes no where near as bad this time.

Might have to put our foot down if nicely doesn't work and say they are unlawfully keeping her ther and its a breach of her human rights.
Hi Tracey,
the other thinks prob impossible to overturn if they say she doesn't and we will always wonder if the environment has played a part in the confusion.
I think (only my personal opinion though,) this is the better angle.

I also think you should do your homework and apply for an advocate anyway, these things take time to organise and you can always the advocate is no longer needed if this is the case.

Under the Human Rights Act you have a right to "a normal family life". Might be worth doing a bit of research on this. I know that there is some mention of it in the NHS Continuing Healthcare Framework.