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Family issues: My siblings challenged moving Mum into care

As the sole carer of a relative with dementia, making the decision to move them into residential care can be a very difficult time. But extra challenges can arise when other family members question your decision and your motives.

Mum's dementia symptoms included short-term memory problems, repeating herself a lot, and agitation. Mum had cared for her own mother and an uncle who both had dementia, so she was aware of the signs. 

I'm the youngest of my siblings – all of whom noticed the changes in Mum - so we weren't surprised when she was diagnosed with Alzheimer's disease in 2016. 

‘Mum was in total denial of her diagnosis. She didn't want to accept that what had happened to her mum was happening to her, too.’  

I tried to reassure her that dementia is viewed differently nowadays, but nothing helped. 

I attempted bringing in social services and carers to assist, but Mum refused it all - and I needed a break.  

Seeking help with support for Mum 

I was Mum's main carer as my siblings didn't get involved. They shrugged the diagnosis off as something Mum would have to 'deal with'.  

I took her to every appointment, checked in on her at home, was there when things went wrong - it was a lot of pressure and responsibility to take on without any help.  

When my siblings did occasionally help, I'd have to organise a detailed rota of care. If there were any issues, they'd always call me.  

‘My siblings found it hard to cope with Mum's behaviour, and found it embarrassing when out with her.’ 

Eventually, we convinced Mum to visit a day centre, which we nicknamed her ‘club’.  

I’d compare it to sending a child off to school – lots of tears, tantrums, a general refusal to go.  

After two weeks, she started to enjoy herself. She had made some friends who she called her ‘school friends’. We used the day centre as a test to see how Mum would react to longer term care. 

Considering moving Mum into residential care 

With the help of an old friend who works in a residential care home, we toured a couple of options and found one I thought she'd feel comfortable in.  

Before the move, the manager came to assess Mum in her own home. They could see it wasn’t safe for her to be living alone any longer.  

‘I asked them not to mention the phrase ‘care home’ in front of Mum as she was so upset at the idea of moving into one.’  

Instead, we told her that her club had closed for the summer but that we’d found somewhere else for her to go, which she seemed to accept. 

On the morning of the move, Mum was upset and angry with me. I hung around for a while to settle her, but the manager said it was better if I left to let Mum get used to me not being around.  

As I was about to leave, another resident took Mum by the hand and wandered with her into the dining room for lunch. She looked comfortable, happy and unaware that I was there. 

Family problems following Mum’s move into care  

The rest of the family all knew that I was thinking about moving Mum into residential care, originally for two weeks to see how she’d settle in.  

This two-week period would also give me a break from the pressure of being her sole carer.  

Despite knowing this, two of my siblings visited and came away insisting Mum didn’t need to be in a home and that she could live with one of them.  

I pointed out that as I had Power of Attorney, they couldn’t just take her – that’s when their protests to me stopped.  

Instead, social services stepped in to reassess Mum to see if my siblings’ claims stood up. They didn’t and it was agreed that Mum was safer in care than at home or living with one of us. 

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After a period of silence, I was served a letter from our Power of Attorney solicitor to say that my siblings believed I was taking Mum’s money and possessions without her knowledge.  

With Mum in care, there was little need for her to have money laying around. It would’ve been likely she’d lose it. The home’s manager had agreed that I would take care of Mum's bank card, spending her allowance on toiletries and treats when I visited.  

After providing enough evidence of this agreement to the solicitor, things went quiet again. 

Then, early last year, the care home manager suggested I get my siblings together to discuss Mum’s care needs.  

‘After hostile comments from some of them, they agreed that we all wanted the best for Mum. Everyone could see that she was happy in the home.’  

After they left, the manager turned to me and said that the meeting wasn’t really about the quality of care Mum was receiving. They believed it was about their own issues with me. 

How things are now 

One year on, and things are great.

Mum is still very happy in the home; she’s gone from being angry to placid, and the staff love her witty humour.  

As for my family, I have contact with one of siblings, but that’s all – the rest have blocked any contact with me.  

Now that the pressure of caring full time has lifted, I’m able to reclaim some of my own life. 

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Care homes: When is the right time and who decides?

It can be hard to know when the time is right for a person with dementia to move into a care home and who should make this decision, if the person cannot make it themselves. 
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3 comments

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I can sympathise with you as you took responsibility for your Mother's Long Term Care. Your family are no doubt busy with their own lives, & obviously too busy to be much use at caring. That's their problem not yours ! I hope relations improve in the future.
NHS have a benefit called "Continuing Healthcare". This is designed to enable people to have professional carers in the home , but if too advanced them in a Residential Home. NHS pays all the costs provided the overall situation is "Complex", & not just early onset Alzheimer's Disease with minor short term memory loss. If daily supervision is important then an Assessment can be arranged via the GP on request by a Power of Attorney.
The problem with NHS is getting an Assessment approved. Most people think this should be an obvious conclusion if you can no longer manage as a carer. However NHS appear to be rationing these benefits due to inadequate funding reserves. Naturally this would not be admitted but the number of seemingly valid cases not approved leads me to this conclusion!
The advice I have given the public since losing my Wife in 2016 is to get professional assistance & do not rely on your own expertise when Assessments are being made. My website on https://continuinghealthcare.wordpress.com/ provides free advice to all who are interested in how to achieve getting this hugely valuable benefit. Its not means tested so the family home is not at risk of being sold to pay for serious health needs , unlike the risk of care via Social Services & Local Authorities. NHS was established 70 years ago to look after people who have medical needs. Getting that care when its needed should be our right.
Best wishes. Peter Garside

Hi there Peter, we hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
We recommend visiting our page on 'Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and downloading our free booklet for further information.
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Alzheimer's Society blog team

It’s a sad world we live in! CHC can be farcical. I helped to achieve funding for a man that had devastating consequences after a stroke. After ten years in a nursing home it was deemed by CC that he’d improved and funding was withdrawn. He passed away 18 months later. I’m now in a similar position as my husband is in a special care unit with Dementia. Despite feeling and knowing this is a terminal illness I haven’t got the strength to go down the route to get funding from the NHS. It would certainly open the flood gates if one ever got funding for dementia and the Government and NHS know this.

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