Best interests meeting

[faith01]

Hello
Our mum has had dementia for 10 years that we know of and we (my my brother, my husband, my sister in law and other family members) have managed to keep her at her own home until recently when we had to call out her GP as she had developed a terrible weeping rash all on her chest and tummy. The GP said he was very converned for her and she needed to be in hospital as he thought she may have cellulitis/ and septicaemia.

Anyway to cut a long story short, she has been in hospital just over 2 weeks and we an the hospital staff now think enough is enough and she maybe needs 24/7 care, (this was spurred on by our GP who also said the same) he said we had done a very very good job in looking after her for so long with no help but maybe the time had come when we now do need more help)
anyway when she arrived at hospital, it came to light she was also severely amaemic (she needed an emergency blood transfusion) an also had a thyroid proplem.
We now have a Best Interests Meeting due this week and wondered if anyone could tell us what to expect, what kind of things will come up. We have looked at a couple of homes and have one in mind, but obviously we do not know what will be said at the meeting.

Also mum literally only has a state pension, she has no home to sell (she is in a local authority property) no savings , so who will fund the care she recieves. I don't like to think she will be stuck in a 'cheap' home as oppose to a nice decent one just because she has no money.

We are bewildered with all the information available on here and also Age Concern about funding etc, it seems to be a bit of a 'postocde lottery' and in some cases it is sorted out quickly with very little fuss and in some cases it seems to drag on for months.So in that case what would happen to her in the meantime?

Could anyone please enlighten me as to what to expect and what should/wlll happen now. Also are we fooling ourselves that we can just pick a home and expect she will be allowed to go there or does it all come down to 'money'

sorry if I have gone on and I hope someone can help. We are very sad she will have to go into a home as we always always thought we would be able to keep her at home, but she refuses to wash or change her clothes now, is urinary incontinent (and now she has been in hospital possibly doubly incontinent sometimes) she is at high risk of falling as she now shuffles if she walks at all. She cannot do the simplest of tasks i.e. make a cup of tea, prepare a sandwich. If she had a packet of biscuits she would either eat every single one or eat a couple and the rest would go in the bin. She sleeps in the day and is awake a lot at night (and would be alone if she were to return home)

Any advise or help would be so very very welcome.

Thank you

A concerned/troubled daughter.
xx

 

[Grannie G]

The best interests meeting is where members from all disciplines involved in your mothers care meet to discuss what should be the next move in her best interests.

If your mother has no savings, the local authority should provide and fund residential care in her best interests.
You will be allowed to have your say, don`t worry.

 

[Sandy]

Hi faith01,

Welcome to Talking Point, though I'm sorry it has to be under such difficult circumstances.

There is a very detailed document from the British Psychological Society that goes through the whole Best Interests process:

http://www.pmldnetwork.org/resources/bps_best_interests_guide.pdf

The cost of your mother's future care will be paid for by either the local authority (LA)or possibly by the NHS, and sometimes by a combination of both if she has high levels of health care needs.

You as her family should be able to have an input into the choice of care home, but that will probably not be an unlimited choice. For example, if the normally pays £390 per week and the home that you would like charges £590, there would need to be some negotiation to make a move like that possible. However, if you can show that there are specific reasons why the more expensive home is much better able to meet your mum's needs (maybe due to facilities or even due to something like distance for visits by family members), there can be flexibility.

You might want to read the Alzheimer's Society's factsheet on choosing a care home:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=150

and maybe even see what care homes are available in your area and read the inspection reports (which are just a rough guide anyway):

http://caredirectory.cqc.org.uk/caredirectory/searchthecaredirectory.cfm

Many members of TP have loved ones in care home (my mother in law, for example) and can honestly say that it has been a relief to find a supportive and warm environment where 24/7 care is available.

Take care,

 

[Jo1958]

Faith, hello
Welcome to TP although I am so sorry that you have had to find us all here.
You and your family have done a wonderful job of keeping your mum happy at home for so long, I agree with the doctor on that one! well done you all.
This next stage will give you time to spend with your mum without the worry, so good time to be together.
Good luck at the meeting and please let us know how it goes.
Best wishes, Jo

 

[willow4Sam]

Hi Faith and welcome to TP. I myself am a relatively new joiner (2 weeks ago) and have found it an enormous relief and source of information. My father was diagnosed 8 years ago with Alzheimer's and until the start of 2009 lived at home with my mother. She was very resentful of his condition and totally unsympathetic to his memory loss and personality changes and last February managed to get him sectioned and put into the mental ward at the local hospital.

Since then I have spent much of my time trying to get the system to sort out his care and have spent hours and hours with social workers and the local community psychologist and we had many Best Interests meetings. I guess they probably vary from authority to authority, but I can tell you that in my experience they are rarely more than talking shops with frustratingly low levels of decision making and action. In my case it hasn't been helped by my mother's refusal to have my father home and her constant change of mind about where he should go, but to cut a very long story short, after the 4th Best Interests meeting in December last year, we finally managed to find a home where my father is now reasonably happy and very well looked after.

As for funding, again I think it all depends on where you live as to the amount of funding you receive and how much choice you have over the home. My mother and father lived on a very modest pension and qualified for pension credit. We were informed that he didn't qualify for full funding and so I had to agree to top up the social services funding which would have cost me about £1000 per month. At the last moment however, it was decided that my father qualified for NHS continuing health funding and so he is now fully funded by the NHS in his care home.

This is a scary time and my sympathies lie with you and your family, but all I can say is that less and less funding is being made available for Elderly care (especially those with mental health problems) and if you want your mother to go into a half way decent home, you may well end up having to contribute to the funding.

Good luck with it,and do use this forum to find out other people's experiences and to get the support and advice from people who really know what you are going through.

On a final note, ironically, my mother has now herself developed dementia so I am going through it all again with her!

All the best, R

 

[faith01]

Many thanks to everyone who has taken the time and trouble to reply, I appreciate it I really do.
why is it that such an imoportant step has to be so complicated and stressful.
we will have the meeting on Thursday afternoon and take it from there, I will let you all know how it goes.

Thanks again.

xxx

 

[60schild]

Hello faith01,

I've spent a lot of time looking at care homes in the last 18 months, and I've discovered that the most expensive are not always the best, although sometimes they do offer better facilities, larger rooms etc.

What *really* matters, in my experience, is how caring the staff are, and how much time they are encouraged/able to spend with individual residents. I'm sure that there are EMI Care Homes in some parts of the country that provide a staff:resident ratio higher than the legal minimum, thus freeing up time for carers to spend interacting with residents rather than performing necessary jobs around the home, but I'm sorry to say that I've not come across any where I live. Even with just basic staffing levels, though, much depends upon the attitude of the mangager. If the manager is respectful and compassionate then he/she will encourage the care and/or nursing staff to behave in the same way.

It really is the case that you can only attempt to make a measurement of what the home would be like to live in by visiting. Just turn up: you don't need an appointment. (Try to avoid mealtimes, though, as they tend to be particularly busy and stressful times.) Try to get an impression of what it's like to live there. Is the place smelly? Are the residents active or simply sitting around together doing nothing in a big room? Are there strict rules about where people must eat, or is there flexibility? Are people allowed to spend time in their bedrooms, or are they required to sit in a lounge where they can be supervised? If there's a garden, does it appear to be in use? Do the residents look happy? Is the food cooked from fresh on the premises? What kind of staff turnover do they have? I'd encourage you to go and see as many homes as you can, and make a shortlist of the ones that seem best suited to your mother. Go and see those again, this time at a different time of the day. When you've got it down to two or three then ask to speak to the manager, if you haven't already met him/her. It's never possible to really know what a home is like until your relative moves in, but there's a lot you can do in advance to try to choose the best one.

I don't know whether it differs according to where one lives, but where I live entitlement to Local Authority funding depends upon what income and savings the person in question has. If they are below a certain level then the Local Authority funds the care. (To be a little more accurate, they work out what pensions and benefits the person is entitled to and apply those towards the cost of the home (leaving a small weekly amount for the resident) and then they fund the balance, subject to what I've said about the LA maximum below.)

Where I live the Local Authority has a maximum monthly amount that it will pay for EMI care (the amount varies according to whether the care needed is Residential or Nursing). They will tell you what that is. When you go to see homes, ask them whether they charge a 'top up' i.e. whether they charge more than the LA maximum. Some do, but not all of them, and--as I mentioned above--I've found that some of the best are not the most expensive.

Very best of luck in finding a good home for your mother. I know how stressful and difficult it is. Feel free to send me a personal message if you have any questions I might be able to help with that you don't want to ask in public. I'm no expert but unfortunately I've had a lot of experience.