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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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9 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.

Sorry to hear of your dilemma Janderhol. I was in a similar position when first turned down by CC when applying for CHC on behalf of my Wife Pauline. Detailed research led to me finding out about the Pointon Case. They achieved funding from NHS to nurse their loved one at their home. Details are on my website via the Link Page. This involved Alzheimer's Disease. I used this case together with professional assistance to win an Appeal & NHS were obliged to fund CHC for the rest of my Wife's life !
I am not saying its easy to get this benefit because its a struggle due to inadequate NHS funding. However with a fight & knowledgeable help its possible. The NHS must be persuaded to give people healthcare by well prepared applications along with a complex case argument. Alzheimer's Society & my website noted above are designed to provide helpful advice.
Peter Garside

I found the original article to be a bit upsetting and also enlightening, as it brought back similar memories of my mother who has dementia.

As her health gradually declined (memory problems, aggressiveness, theft, agitation), I noticed thet our entire direct family abandoned her, that is to say my brother, his children ..... and even her blood related cousins who are still alive. I was left with the whole responsibility of dealing with this. Initially, through my lack of knowledge on the topic, I struggled with the whole issue of seeing Mum deteriorate and change so much. By early 2016 we were in a situation where a social worker assessed her and was talking about taking her in to care and having to sell her house to pay for it all. I was disgusted, although I have heard a lot of councils do this. I also found her GP not once recommended a professional assessment by a neurologist, although she regularly visited him to say something was not right!
At this point, I had finally managed to persuade her to sell up and come to Spain with me. We sold the house and moved her to Spain within 5 months, this period being the most stressful andtraumatic for her and me.
The first thing I did was take her to a neurologist for a full professional assessment and a brain scan. On the basis of this her meds were completely changed.
In fact, there was a noticeable improvement in her "behaviour" and I agreed to get a her a flat near the sea. With daily support and assistance from me, she was mostly okay. This lasted about 6/7 months, but once again her health declined and her behaviour included disappearances, false claims of theft to the police and locking herself in to her flat. I got carers in, but she kept throwing them out. Not long after, she went in to a care home. She adapted fairly quickly, 2 months maybe, and has been there ever since. They have auxiliary staff all day who are lovely people watching, caring, talking to the residents. There is daily entertainment morning and afternoon. There are classes to practice memory skills, weekly physio sessions, a doctor, three nurses. A lovely garden/patio for the summers, a library, a huge consevatory. It is a wonderful place.
Add to this she sees the neurologist every 9 to 12 months, and her meds are tightly controlled by the Spanish Health Service, well, it is the most relaxed I have seen her in maybe 10 years.
Oh yes! And it all comes in at half the price of a private UK care home.
What she had to go through, and still does has been very difficult for me. I am considered by those who know me as a bit of a tough guy, somebody who is really in control. I am fit, work hard on my in-laws property chopping wood, fixing roofs whatever at weekends. I work hard in my job.
Yet, inside I feel a profound sadness, sometimes anger at my family for the way they abandoned her. Anger at her old UK doctor, the council where she lived, even neighbours who once very friendly then shut their doors to her. I don'tt believe I will ever forgive my family for the way they treated her, branded her as a nutcase. I am not sure I will ever lose the guilt I feel for the times I became frustrated, exasperated and desperate at Mum and shouted at her. I just didn´t understand what was going on with her, I felt so impotent.
I have since learnt a lot about Alzheimers through seeing the illness in my Mum, through this website and through sharing with other families in similar situations.
On a personal level the support I have given to my Mum since 2014 drove me in to a deep depression. And here in 2020 while on the surface my business and life looks great to everyone, the reality is my business is failing and will shut down this year, and I have now been in therapy for almost 2 years. My partner has been amazing, never once losing faith in me, in this I am very lucky.
As I write, the therapy has helped immensely. I am for the most part getting back to my old self, beginning to enjoy activities again, I have even gone back to studying!
My partner and I have accepted that caring for our parents is an important part of our life. They gave so much to us, maybe we can give a bit back. Visiting Mum elicits a mix of feelings - deep sadness to see her so small and defenseless, but also joy at seeing her smile and the never ending hug I get every time I visit her.
The care home has been wonderful. They literally saved her, but it is fair to say they also saved me.

NB: I realise not eveyone can pay for private care, but in order for my Mum to be able to do this we obviously fund it with the house proceeds. But, there is a big difference on selling your property and being in control, as opposed to your assests being forcably sold and the proceeds going in to your local councils coffers.

I can sympathize with the writer, my wife has a raft of problems, dementia, Parkinson’s and extensive brain damage due to several strokes, it is remarkable that she does as well as she does. Since our GP sent her to a residential care home she has thrived and is much happier. I cared for her for as long as I was able until my health began to suffer but our son who lives in the UK, my wife and I are Swiss and live in Switzerland, has refused to accept the situation, he is by the way a doctor and was the first to diagnose my wife’s problem, he has caused more problems than it is possible to imagine. He accused me of mistreatment, theft (of my own money), of threatening to murder my wife and it goes on, even after the police and our social services have ruled his accusations complete nonsense. He brought a court case against me and when he lost that a second. A complete nightmare!

I feel your pain. I'm in a similar situation right now. Mam has been in hospital for 6 weeks with pneumonia, fluid on lungs, heart problems, she was diagnosed with alzheimer's dementia in oct 2016, re diagnosed with lewy body dementia in june 2017, man has 5 sisters, myself and son, I am her main carer, mam never wanted to go into a care home, I've tried my best, but now in hospital social worker is saying she doesn't think mam will get home, I'm really stuck and torn on what to do. My head is in bits, think her sisters want her in a care home, my brother doesnt get involved as doesnt like to see her this way, it's all the what ifs , the guilt, the sadness,
Glad your story worked out ok xx

I can sympathise with the feeling as I too am my mum sole Carer despite having two siblings. I also live with my mum with my family and accept that my family will do more as we are there But we still need family time and I struggle to get any of that As even an overnight stay means list made for siblings etc. Mum I feel is still ok in the house but is that because we are there and the gilt I feel about her going into extra care is so hard

I find myself in a similar situation but with all the key players switched up. My Mum diagnosed in 2016 with Alzheimer’s is at moderate/late stages of the disease. My sister and I were not as involved as we should have been for the first several years, with my Dad caring primarily for Mum. We have a disjointed family at the best of times, which played into us not stepping in and stepping up sooner and more forcefully. My Dad (under the guise of protecting us) kept us at arm’s length. We knew we were out of the loop on the real progression of mum’s disease; we tried to support my parents the best we could through attending appointments when we could (when we knew about them) visiting and generally trying to make their life easier through the minimal connection we had. But it was Dad calling the shots; this is our father who we’d always taken our lead from and he just kept saying they were all good., everything was fine. Then a few months ago life turned us on our heads and we find ourselves in a situation we never could have imagined. Dad has many physical and mental ailments of his own, it became abruptly obvious that Mum was not safe in their home under dad’s care and she was removed by another family member and immediately came to live with me. Since then we’ve been thrown so many curveballs it’s become insane, lawyers, police and others are involved. My Mum is staying between my house and my sisters ... happily trodding along beside us wherever we go just content to be near her girls and grandchildren. It is the hardest job out there don’t get me wrong ... but she, my Mum (the one WITH Alzheimer’s) has been the relatively easy part of this new caregivers role. It’s been the pushback and grief over my Dad that has torn us up and worn us down physically mentally and emotionally. I’ve been so extremely frustrated, disappointed, and yes hurt, by all of the systems that have failed my Mum throughout this; the very agencies and systems in place that she’s paid taxes to that are supposed to protect her.
I do appreciate reading these stories of different perspectives and can see why maybe our case is a bit of an anomaly, and maybe why the systems and agencies are slower to step in as they are used to situations that are different. Bottom line - we are all here with these stories because someone we love (and SO many others we don’t know) are fighting a battle they never wanted to be in and we need to stand beside and in front of them to make sure they have their best chance at living THEIR lives out while carrying the burden of Dementia.
Post Note: I didn’t mention a key factor in why these stories hit so close to home. It has been Mum’s signed and appointed POA of Dad from 10+years ago that has us hitting a roadblock every time we try to move forward and get supports for Mum. My Dad has been hostile and nobody wants to make a call that goes over that signed legal document ... even when it’s come down to immediate personal safety concerns.

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