Mum's dementia is really bad now....I don't know what to do!

[Hob]

Dear All,

FIrstly, Happy New Year to you all. This is my first post and I have to admit I'm struggling with my Mum's dementia.

She was diagnosed with Alzheimer's about 2 years ago. She is now living in sheltered accommodation in a lovely flat which is only a few minutes walk from my house - so everything, until now, has been OK. I visit every day after work, she spends most of the weekends at my house and I have a lovely carer who visits her 3 times a day also (all self-funded), so I am fairly satisfied that I am doing as much as I can to look after her.

However, in the last couple of months she has become increasingly anxious about being left alone. She cries every night when I leave her. She calls me over and over again because she doesn't know where she is and she needs constant reassurance. She is dreadfully unhappy and anxious all the time. I have the same conversations with her constantly. I try to make things better for her and to explain that she is being looked after, but of course, she cannot retain this information. More recently she has been hallucinating and has begun to do 'silly' things for example, she put all her Christmas presents in the fridge! I really think I'm at a different stage with her now and I don't know what to do.

Her condition has deteriorated rapidly since her first diagnosis and I'm not sure for how much longer she will be able to live in her own home. I'm beginning to think that she needs 24 hour care, but I really don't know where to start. Social Care have been pretty useless, to be honest. I just need a bit of advice - is there a charity that could help me with information or shall I just approach care homes on my own? Also, how do I pay for it? My Mum owns her little flat, but I don't think we'll be able to sell it that quickly and I certainly can't afford to pay £1400 a week for care.

It is so upsetting to see my Mum unhappy. When I sold her house in 2017 and bought the new flat so that she could live close to me and her grandsons, I thought that we would be able to do stuff together - nothing out of the ordinary, just shopping trips and family outings, but this has not been the case. Her dementia is now severe. I feel guilty when I'm not with her and if I go away, but it's hard for me too as I am the only child, a single Mum and I work full time.

Apart from that, everything else is OK!!! Any advice would be very welcome. THANK YOU

 

[Cat27]

Welcome to DTP @Hob.
As your Mum is self funding, you can start to look at places yourself. Contact social services as they can arranged a deffered plan until your Mum’s flat is sold.
You’ll get lots of support here if you keep posting.

 

[canary]

Im so sorry @Hob . Many people with dementia develop a fear of being on their own and once this happens they really need 24/7 care. You are indeed doing as much as you can, but dementia always wants more.

As a general principle, if someone has savings and assets (including a home that doesnt have a spouse living in it) of £25.000 then the Local Authority will start to pay towards the cost, so if your mum is under, or on the cusp of this threshold then you need to involve Social Services who need to agree that your mum now requires a care home.

If your mum will be self-funding for a while then you can go ahead and choose a care home on your own. It might even be a good idea to look at homes so you know what is out there even if she needs LA funding.

When you go and look, dont be taken in by fancy decor and bells and whistles. Will your mum be able to work the TV in her room? Does she really need a spa, hairdresser shop,cinema or a bar? What your mum needs now is people, so you need to look at the care actually given. Are there times when the residents are left on their own? How much experience do they have of people with dementia? Are there people around in the more advanced stages of dementia? - if not, this usually means that they can only cope with the early easy stages of dementia and once they reach a certain level they will be given notice. Will the home tolerate her going into other peoples rooms (because she has forgotten where her own room is), or wandering around at night? Is it a secure unit, so she cant go out and get lost? What sort of activities do they organise? The place my mum was in wasnt an expensive, flashy home, it was slightly scruffy, but clean, with a homely atmosphere and most importantly, with staff who really cared.

 

[Louise7]

Welcome to the forum. Your Mum sounds very anxious, has she had a medication review recently to see if there is something that could help her with this?

With regards funding a care home placement, if your Mum does not have the funds to pay care home fees prior to selling her flat you would need to request a needs assessment from social services. Unfortunately it's not as simple as family saying that they think a care home is required. Social services will look at what care your Mum requires and they will normally not consider a care home placement unless the person requires more than 4 carer visits a day. As your Mum is currently having 3 visits they may suggest an increase to 4 visits a day. They may also suggest that your Mum tries a day centre.

After the needs assessment a financial assessment will be carried out. If social services agree that a care home placement is necessary there is a '12 week disregard ' period in relation to property, whereby they will pay care home fees pending the sale of the flat if your Mum is not able to pay for the care home herself.

If the flat is still not sold after the 12 week disregard period then the local authority can offer a deferred payment agreement whereby they place a charge against the property and pay the care fees (including interest) until such time the property is sold.

You may find this fact sheet useful: https://www.alzheimers.org.uk/get-support/legal-financial/who-pays-care