Any advice please?

[lil50]

I have been helping care for my 92 year old Mum with Alzheimers for just over 2 years now. I live about 1hrs drive away but travel up 2-3 times a week to spend the day. She also has regular visits from my brother who lives nearby and 4 daily visits from carers.
I wrote some months ago after the consultant gave Mum an MMSE score of 20 having previously been at 13. It seemed too good to be true and in fact I think it is. Mum is slightly calmer on the anti-depressants but what we are seeing at home would not warrant this improved memory score. We are seeing the consultant again on Tuesday, any ideas on how I approach this? Should I just come out and say I think he got it wrong last time?
Also I have many concerns about Mum continuing to live alone. I would love to move her to lovely care home near me. She is lonely and sometimes frightened. To family she will often say she would be better off in a home but when asked by the consultant or SS she refuses to entertain the idea. I have read several posts on here recently where family have moved their relative to a home by subterfuge. I have considered this but SS have told me that Mum cannot be moved against her will and if we did move her to a care home and she wanted to leave they would not be able to stop her.
At a best interests meeting last October it was decided she would be better in care but since then nothing has happened, are they waiting for a crisis of some kind?
We have POA for finance but not for health and welfare. Is it too late to consider doing it now?
Sorry for such a long post and so many questions. I feel better for just putting it all down. This seems to be the only place I can come for help from the people who really know.
Thank you Liz

 

[Oxy]

Consultants can have rather a high opinion of themselves maybe say something like her increased score was a surprise to you and that it may just have been an exceptionally good day.
Write down (dated and timed) any thing said or done that shows that being alone is not in best interests, including when she says she would be better off in a home. Good luck with next meeting. A chat with admiral nurse help line might be an idea prior to consultation. Better to have as many facts on your fingertips as pos.

 

[Witzend]

Would your mum be self- or LA funded? I say this because from all I read and hear it would seem that SS are fond of using 'we can't put her in a care home if she doesn't want to go' as an excuse, because they naturally do not want to be picking up the tab for hefty fees. How many people will ever say they do want to, if asked? Often it seems that SS will not act until a real crisis occurs and they have no choice any more.

If you are self funded, I do not see that you need to go by what SS say. After all they will never know the person and their needs nearly as well as you do.

We did not involve SS at all, either with my mother or my FIL. We simply found the right care homes for them (not that there was anything simple about it - there was an awful lot of looking) and went ahead. I think there was a 'tick box' visit from a SW at the CH's request in my mother's case, but it was just a very brief formality. We did not discuss the CH decision with my mother at all, since she had no insight into her condition and would simply have refused to go. We too had to get her there by deception - not at all our choice but the only option at the time.

Of course it is technically true that if there has been no official Deprivation of Liberty order, and the person asks or demands to leave a secure care home (as most dementia units will be) then strictly speaking the staff have no powers to prevent them. However, in practice I am sure that many people with dementia ask or demand to go home in the early days and no reputable CH is simply going to allow a vulnerable person with dementia to walk out and get lost, run over or otherwise come to harm. In practice, they would have to ask relatives to come and fetch them, and I have to say that if this had happened in my mother's case, purely because she was asking to leave, we would simply have refused. We knew that she needed 100% to be there, and if we had taken her home we would only have had to go through the whole torturous business again, and put her through all the upset of yet another move. And nobody else would have been able to take her home, since from a purely practical POV they would have had no house keys.

Obviously there need to be careful safeguards so that people who do not need to be in care homes are not put there by unscrupulous relatives*, but in practice I am sure (in the case of dementia) that any reputable care home dealing with dementia would very quickly be aware if someone did NOT need to be there.

*mimd you I don't think many unscrupulous relatives would be voluntarily shelling out care home fees - far more likely to leave someone with dementia alone, living in increasing squalor, not eating, frightened and wandering off on cold nights, etc.

 

[lil50]

Thank you both Oxy and Witzend
You have both given me very useful practical advice.
I do write down some of the things that happen but it never entered my head to write down when Mum says about going into a home, or the times, but I shall definitely do so in future and I will ask my brother to try and do the same.
I will also try the Admiral helpline
Mum would be self-funded at first but her savings will not last long and then she will be dependent on LA support. I can totally see that SS would delay this as long as possible for financial reasons.
Your replies have restored some of my energy to go into battle on Mums behalf again,
Thank you again taking the time to reply.
Liz

 

[jaymor]

My husband had 6 monthly memory tests for 7 years, the results went up and down every time. His first one was 23 which set the ball rolling for further medical checks and scans which gave us a diagnosis of Alzheimers. All but the last test were above his original score but from my point of view and that of his SW and CPN my husband was in no way capable of making a safe judgement or decision by this time.

If your Mother's consultant says she has capacity to decide her own care then she has capacity to grant you LPA for health.

Self funding means you can go ahead and choose a home, persuade your Mother to go and SS can say nothing. As Wizend has said they could not just open the door and let her walk out if she said she did not want to stay. They would have to make arrangements for her to be taken safely from the home.

The only problem I can see, other than getting your Mother there, is if she likes the home and is happy to stay there and her self funding comes to an end and the LA have to be involved with the care fees then they will decide whether she should be having this level of care and how much they will be prepared to pay if they say she needs the care.

If you choose a care home that provides more care than the LA assess your Mother to need then they will not cover the fees and there will be a short fall. You can of course move your Mother to a home they will pay for but this may have a detrimental effect on your Mother. So when choosing a home be aware of what the charges cover because you may be paying for care that is not needed.

I hope you can sort something out that will help your Mother and give you peace of mind that she is safe and happy.

Jay

 

[lil50]

Well following the good advice I received here I felt I was prepared for our meeting with the consultant, Then the day before the meeting came the early morning call from the carer that I have been expecting since Mum has been living alone. Mum had had a fall. The crisis we feared had happened.
Mum was found to have sustained a broken hip. It was over 48 hours before Mum had surgery to repair the break but the operation is said to have gone well. She is more confused than normal but from what I have read on here that is to be expected.
We have been told that she will be in hospital for a minimum 15 days but what then?
They say she will no longer be able to manage the stairs and will need 24 hour care. The OT has left her a note on her table asking her for details of the height of chairs and toilet, details of bed etc. Can they be considering sending her home? She wasn't coping before, nor were we.
I now seeing how unaware some hospital staff can be in dealing with patients with Alzheimers. Mum is at present alone in a side room, I hope things will improve when she can be moved to a ward more suited to her but they have no space at the moment.