I spoke too soon.

[Deanne100]

Hi Y'all

Yesterday, thanks to great support from many of you, my spirits were lifted....then I got a couple of calls about Mum's behaviour. Mum had made calls asking to be taken shopping. For different reasons, both had to say 'no'.
However, one caller, a neighbour, wanted to know the in's and out's of the family actions with respect to Mum's care...they were quite demanding and almost accusative.

So I emailed my bro, he called me back, (he lives in Oz), he messaged the neighbour. Hopefully they will be placated for quite sometime.

Don't get me wrong, the neighbour helps out by putting Mum's bins out and keeping an eye on curtains and lights, to be sure that Mum is getting up, going to bed and active, not sitting in the dark etc. BUT I can only tell her that Mum's behaviours is caused by the Alzheimer's.

I think Mum was brave to reach out for help. What I hadn't known until last night, was that the carer who walked off the job, during her notice period, on Wed, didn't go back at all. (New carer should now be in place). Mum made a serious accusation. The cause of resignation was, I can't say. I'm becoming scared to be 100% open with anyone, because in 'black and white' it wouldn't read well, to people who don't know Mum well. I think she has an undiagnosed personality disorder. Her words and actions frighten me but do not surprise or shock me, as they do others. (These behaviours don't happen often)

Anyway, the neighbour says, 'Well if her A is that bad, she should be in a home'.
Last week, the carer said that Mum should be urgently reassessed. Bro doesn't agree. He spent a few days with her in Aug. Since then, communication has been mainly be telephone. Emails tend to be ignored.
LPA on F is in progress. Bro being the donor.

During the call with bro, I mentioned attempting to get LPA on H&W signed on my next visit. I live 160 miles away. My bro thinks it is not needed yet. I said that I'd rather have it in place in readiness. However, I will be surprised myself if Mum even considers signing it. If you take a look at my post 'Christmas 2020 Guilt', it describes Mum in better detail.

SS are involved. They carried out a need's assessment earlier this year, alerted by neighbours and District Nurses. I have not seen a copy of their findings and I'm not sure if they are legally obliged to give me one. Now that Mum's husband has passed away (Jun), I am her NOK. Mum did not meet their basic needs criteria for support so bro decided to use SS Micro Care support staff. We only learned of Mum's dx late June. A lot had been hidden from us. July, bro flew over, I joined him, we did as much as we could in the time available including hiring a Micro carer to go in several days a week for between 10 - 15 hours total. Bear in mind, at this point, we are totally naïve to A. So carer comes in, carer resigns, .....now in this, the carer is communicating with SS, as are we, to find her replacement. Now, I don't know who decided that Mum need's 4 hours am & 2 hours pm, it wasn't bro or I but one of the 2 carers, put forward by SS, did not have those hours available, so stepped out of the equation. Leaving us/Mum with 'no choice'! So 6 hours a day at £15/hr = £630.00 a week plus expenses!!!! Mum is 'self funding', or should I say, bro is paying out of his own pocket until LPA F is registered. Do you see where I am coming from?

I do think the theory of a person staying at home for as long as it is safely possible is the right thing to do BUT where do you draw the line?

One of the things the neighbour said was 'Someone has to take control'. I've been researching many area's and sharing my finding with my bro inc agencies and CH's. In my mind, he ultimately has control because of LPA F but we have agreed to make decisions together. Bro thinks it is too soon for Mum to go in to a CH. I'm not sure. I'm on the fence and I am loathe to take action, in fact, I will not override his opinion and risk falling out with him.

So, my question is: At which point should a person go in to a CH? Would you lovely peopele mind listing the behaviours that would deem the action necessary please? I'm on the fence but I do need to appease my conscience and have a defence ready for the next time information/answers/actions are almost demanded of me. Grrrrr

Thanks in advance, all you lovely people x
Feel free to ask questions but please do read my other post first. You may find the answer there. I've not yet found the strength to deal with this, without becoming quickly exhausted. x

 

[Grannie G]

So, my question is: At which point should a person go in to a CH?

Hello @Deanne100

My response to your question is when the person with dementia is at risk.

This happenes sooner for people with dementia who are living alone, however good the care package is, than it does for people who live with a partner or a relative.

My mother went into residential care much earlier in her dementia than my husband even though she attended day care and we took over at the weekend.

I was with my husband 24/7 and could make sure he was safe.

As far as I`m concerned this is my criteria.

Social Services might make an assessment but it`s invalid if the care needed cannot be provided.

 

[Deanne100]

@Grannie G Thanks Sylvia. Which poses the question....when do you consider a person to be 'at risk'? I mean, we are all 'at risk' in everything we do!

 

[Sarasa]

Hi @Deanne100, I'd agree with what @Grannie G said. I moved mum when she went out drinking with random men, and was beginning to look more and more like she would go wandering at inappropriate times. Mum lived in a block of flats where everyone was supportive (as she had been to others when she was well), but when she started banging on her neighbours door in a towel accusing them of stealing her electricity I knew I had to do something.
I think you need to start looking at care homes now, and not wait for your brother to agree. It sounds like your mum has declined a lot since he saw her, and she can probably sound OK if she just speaks to her for a short while. My brother thought I was exaggerating about mum's behaviour till she went to stay with him and spent several hours screaming about how he was deliberately freezing him as she was cold. Everyone else was in t-shirts as the heating was cranked up to max.
What you could ask the neighbour to report you mum to social services as a vulnerable adult to whom they have a duty of care. That with the reports they've had from the police might make them take more action, but if your mum is self-funding just find a home, give her an excuse as to why she needs to be out of her place for a while, and do it.

 

[Palerider]

Hi @Deanne100

I agree with @Grannie G -when the pwd is at risk.

Its a tough call to make because many of us want to keep our paernt/s at home for as long as possible, but thats only viable if the stage they are at permits them to function safely and with no risk of harm (mental as well as physical) -put simply.

My mum was at risk in the end because she was no longer eating, not taking her medications and had began to wander. In a short space of time she was no longer sleeping at night and trying to leave the house at silly 'o' clock. On top of that was her mental well being which she began to verbalise. Although I lived with mum and did my best by her I also work full time which meant leaving her alone -this in the end troubled her as her anxiety was high and in the last few weeks I took emergency leave she repeatedly said she didn't want to be on her own anymore.

Its not just the physical its also loneliness and mental well being that are indicators that a CH is best, and I say that having resisted for sometime.

 

[Deanne100]

@Grannie G @Palerider @Sarasa. Thank you. I have done a little research but very casually. It's a whole new world.
Besides A, she is also diabetic, has a stoma, mobility issues and possibly developing cataracts.
What type of home should I be looking for? I've been lead to believe that she'll need EMI nursing. Is that right? Is there a specialist site I can use? How does one sift out the relevant/irrelevant homes? Thanks again in advance. x

 

[Louise7]

@Deanne100 It sounds like nursing care is required. This is a good site to get an idea of what's available in your area, including reviews. If you search for 'dementia' homes there are drop down menus for things like 'challenging behaviour', medical issues etc so that should whittle down the types of suitable homes. You can also check out inspection ratings on the CQC site too. Then it will be a case of calling any that seem suitable to let them know all about your mum to see if they can meet her needs - be honest as to how she is as you don't want to place her in a home that says it will meet her needs but can't and need to move her later. The current situation means that visiting to view homes may be difficult but some can give 'virtual' tours: https://www.carehome.co.uk/

 

[Palerider]

Yup defo nursing and yes EMI unit from what you have said. As @Louise7 has highlighted call around and describe your mums behaviours and see if they will be able to care for her. EMI units vary, some are true EMI others say they are, but they're not. If you can't visit the home to view then be sure to scrutinise how they would manange your mums behaviours. Is there a routine GP round in the home every week. What activities are there etc etc. It may take some time to find the right place, but its worth the effort because in the right place your mum's needs will be met. Best of luck, not easy I know.

 

[canary]

What type of home should I be looking for? I've been lead to believe that she'll need EMI nursing. Is that right?

Its very difficult to be precise as most care/nursing homes have their own criteria about what needs they can, and cannot, meet and, threfore what behaviour they can and cannot meet.

As a generalisation, though, residential homes are looking more towards the frail elderly and, even if they say they accept people with dementia, they usually only want those in the early stages. EMI homes/dedicated dementia units are the ones for people with more advanced dementia. Care homes are people who need social care, but not nursing care. They can do things like personal care (washing/dressing etc) and deal with incontinence, use mobility aids including hoists, assist with feeding and giving prescribed medication and there is usually a program of activities including outings (difficult at the moment due to covid). There is also a GP and a district nurse coming round regularly, but not a qualified nurse on the premises at all times. If you need a qualified nurse at all times, then what is needed is a nursing home. Nursing homes are, obviously, more expensive and there arnt many EMI Nursing homes around.

I told you about my mum on your other thread, Deanne. After mum was discharged from hospital she went to an EMI care home, where she settled and lived the rest of her life. The carers there tended her right up to the end.

 

[Deanne100]

@Louise7 @Palerider @canary @Sarasa

Crikey, I am not ready for this . Mum phoned me a little while ago. She sounded chipper, but lonely. She couldn't remember the name of her carer that had been with her for 4 months. The stories she repeatedly tells keep changing. I need to come back to this later peebs. Thank you x

 

[jugglingmum]

I mentioned attempting to get LPA on H&W signed on my next visit. I live 160 miles away. My bro thinks it is not needed yet.

Your mum might well be on the verge of loosing capacity, I think this is fairly urgent if you can get it at all.

 

[canary]

Crikey, I am not ready for this

Sorry, it can be overwhelming.

I suspect that your mum has been having problems for a very, very long time, but most of them have been hidden. She has now reached the point where they cannot be hidden any longer and they have all come tumbling out.
(((((((((((((((((((((((((hugs)))))))))))))))))))

 

[canary]

Your mum might well be on the verge of loosing capacity, I think this is fairly urgent if you can get it at all.

I agree with this.
By the time you need POA it is too late to get it.

 

[Palerider]

@Louise7 @Palerider @canary @Sarasa

Crikey, I am not ready for this . Mum phoned me a little while ago. She sounded chipper, but lonely. She couldn't remember the name of her carer that had been with her for 4 months. The stories she repeatedly tells keep changing. I need to come back to this later peebs. Thank you x

Take your time and have a think -its a lot to take in and absorb in one go.