Please help - very vulnerable relative and dementia

[Soupset2020]

Please help. I’ve name changed but I’m so upset and I don’t know how to help or to help my mum. Please let me know if this needs to be moved to the right area.

I’ll try and explain and keep it as brief as possible. My mum comes from a large family of siblings and is the youngest. She was particularly close to one of her sisters who is 20 years older than her. This sister married very late in life and when her husband died it turned out he was very wealthy and he left her everything. This was about 15 years ago and since that time another one of my mum’s sisters constantly used to bully her for the money for her and her grown up children.

It’s quite a hierarchical family and everyone warned my aunt - including other siblings and cousins that she should be careful. She frequently used to ring up my mum in tears in the early hours of the morning saying she’d been guilted into giving away large sums of money and my dad became exasperated with her in the end because although she would cry and rage about it she would always give in.

About 7 years ago she was getting much more elderly and she decided to buy a flat very near to her sister and her sister’s daughter. It was far from where she was living and everyone warned her against it and to stick to where she knew and where she still had family nearby but she ignored everyone.

About three years ago we all lost contact with her and have not heard since. My mum recently found out from her brother that he’d heard my cousin had stuck my aunt in a home as she had very bad dementia but would not tell anyone the name of it. My mum is distraught at this and feels she should be living with family who want to look after her. She has spent all of today crying and saying that not only did they take all her money but they have now abandoned her.

Today I managed to find out which home it was and I went with my mum to see her. It was one of the most distressing things I’ve ever witnessed. She looks completely different now and her dementia is very bad. She used to be bullied a lot by this family and i wonder if the isolation and bullying has aggravated the condition or caused it. I spoke to the care home staff and it turns out she has actually been there a year and no one ever visits her. They did not realise she had any other family apart from my cousin who they said turned up once for a review meeting.

My mum is in pieces and wants to try and get her to come home and says she will look after her. My aunt is clearly not able to think for herself and I suspect my cousin has taken control of all her affairs and will probably say no. I have no idea what to do. My mum is adamant that my aunt shouldn’t live there. When we saw my aunt today she did keep saying how lonely she felt and that family should stick together in her more lucid moments. I know my mum could look after and we would all help but I have no idea whether it will even be possible. I suspect if my cousin is in control of everything she will just say no and to keep her there.

My heart is breaking both for my mum and seeing my aunt today. Please can anyone advise me.

You can't care for someone with advanced dementia at home- it will destroy your mother. It's thankless, gruelling, dirty work. Think having a 13 stone newborn.

However, if you believe that financial abuse has taken place the best place to start is local social services.

That and visit her often. If the home is crap, visitors will help encourage them to improve.

I don't think anyone is thinking clearly or practically here, unless you've cared for someone with advanced dementia it's not possible to understand what's involved. Think about seeing a much loved elderly relative wearing (and having to put on) adult diapers, toileting, them smearing themselves with waste because they don't know what they're doing; or lashing out in anger because they're suffering and confused about the "strangers" around them (their own children and grandchildren) trying to get them back to bed; the hoists needing to be installed to wash safely or get them into bed, needing 2 people; the crying and scared sobbing at night because they don't know what's going on. These are my memories of having a (not that advanced) relative with us for years before it became so bad they needed 24hr professional help, it's not something most people understand.

The first step is adult social care, ring them for advice but please don't leap in, or let anyone, leap into this situation as a gut reaction then make it far worse by not really understanding what it entails!!

You cannot underestimate the impact of a severe dementia - it is very very difficult to cope with. I think that the first thing you should do is to raise a safeguarding alert.

Look on the Office of the Public Guardian website (google it), you can apply to find out if your aunt has any LPA's registered. From there you can see how decisions are being made on her behalf.
I agree though that looking after her at home would be immensely difficult. Heartbreaking as it is, a good care home is probably the safest place for her

I would try to manage the emotions tonight. How often can you visit? Could you have a rotating so there are daily visits or near it?

Dont rush. See how she is over time. It's incredibly upsetting but at the moment you dont know enough. People with dementia do change - the care might be ok or it might not. More visits will never make the care worse, that's for sure.

You know where she is and can now all visit her.

The cousin doesn't need to tell staff about other family and the home should not be discussing this information with you sorry.

I think you need to consider how 24 hour care will impact on everyone. It will change your whole life, the security of the home, needing to be fed more often, washed, changed, holidays, just popping to the shop, medical needs, sleepless nights as they roam when they can't sleep.etc

Your poor Aunt and Mum that must have been such a shock. I think you need to find out more though. First off who is paying for your Aunt’s care. Is it proceeds from her estate or is it the council? If it’s the council then I suspect all her money has already been had by your other Aunt and her children. At least if it’s the council you may be able to get her moved closer to your Mum.

Then what type of dementia does she have? They all have their own quirks and difficulties. Do not underestimate at all how hard it is to care for someone with dementia. I’m guessing your Mum is in her 60s, and physically and mentally really hard. Pop over to the dementia board to get a look at life caring for someone with it.

At least if you are all visiting, you can make sure that she’s cared for and she will know she’s loved when she has lucid moments.

you can do this at home with some help x dm me if you need any more info x

She clearly now lacks capacity to make decisions, so unless someone has been given Lasting Power of Attorney you would need to apply to the Court of Protection and ask for a deputy to be appointed. It might be considered unkind to remove her from the home she now knows and is settled in. It seems highly unlikely that the CoP would allow her to return to be cared for by willing but inexperienced and untrained relatives.

It would be too much of a burden and that creates risks for everyone. The dementia won’t get any better and she won’t get any easier to care for. Clearing up diarrhoea for the fifth time in a night, from hair and fingernails, isn’t sustainable within a family home. Being spat at, scratched, bitten or listening to almost continuous screaming isn’t sustainable. However willing and well intentioned, most families cannot cope with someone in the later stages of the disease. Professional nursing care is needed.
Dementia can change people’s appearance. The home can’t change that however good they are.

I agree. At the moment her dementia is not at that stage of biting, scratching. It’s more that she did not recognise me but she did recognise my mum and spoke of growing up and their parents. She kept saying she was lonely and there was no one there to speak to and that the family should stick together but im not sure she always realised we were her family although she did recognise my mum and called her sister. We spoke to the care home and they said she would be fine to stay with family as long as it was approved (they do not know the backstory and I did not want to divulge it).

It’s just very sad. She always had black hair and was vain and would die it. All my mum’s sisters are like that. But today when we went in it was completely grey and I just found it very distressing. I know she wouldn’t have wanted that and it’s because she’s in this care home and they don’t know and my cousin has obvious has never bothered.

I take the point about visiting now. But the care home is over an hour away from where we live by car and a lot longer on public transport. I called a friend today who came at short notice to take us. My mum would want to go several times a week if not every day to visit her and I just don’t know how she can if she can’t get her moved closer or in with her. The care home said no one has visited her since she was there 8 months ago. It really does feel like she has been left to rot with strangers - albeit well intentioned ones - but we are her family and love her and want to care for her and have her at least closer.

I feel completely lost.

I know you’re upset and this is hard to cope with but you are coming across very judgemental of people who have no choice but to use residential care services. My gramps lived with us for 10 years until his dementia became so advanced that he started to put himself and people around him in danger (starting fires, mixing water and electricity etc) so he went into residential care so he was safe, but he came home for dinner most nights. We did not ‘stick in him a home to rot’, and I don’t care for your tone.

Have you have ever actually looked after someone with advanced dementia? It’s all well and good saying your aunt should be with family who love her, but loving someone just isn’t enough to keep them safe around the clock. It can be like looking after a large, aggressive newborn with a full set of adult teeth and sharp fingernails who knows how to turn on the gas or abscond in the middle of the night.

By all means do your best to bring her to a care home closer to where you and your Mum live, but don’t go rushing into pulling her out of the residential care system unless you are absolutely certain you can safely meet her needs without compromising your own mental and physical health. With respect, you have been to see her once, and seen just a snapshot of what caring for her might be like. Caring for her 24/7 is likely to absolutely break your mother.

I’m sorry I absolutely do not mean to upset or offend anyone. That’s not my intention. It doesn’t sound like you did stick your gramps in a home to rot so I’m not sure why you are inferring that from me. And I don’t care for your tone either. If you read my whole post this is incredibly upsetting and a completely different set of circumstances from you and what you went through.

My upset and distress comes from the fact that it does feel like having taken every penny from my aunt my cousin has stuck her in a home, refusing to tell the rest of her family where she is and never visiting her herself. That does sound and feel like she has been left to rot whether you like it or not.

I understand people’s advice about dementia and I will try and find out from the social workers how advanced her needs are and whether there is a care package or what can be done either about moving her closer to people who can visit more if she cannot stay with us.

I wanted to ask for advice about how likely it is we can get involved with this though. My fear at the moment is my cousin has power of attorney or will be in control of all things and will refuse and say no out of spite. Is there anything we can do to begin with or challenge it.

Not a lawyer so may not be much help but at the moment I would proceed as if you could do this and let your cousin try to stop you. So start researching nursing homes or setting up a room for her at the least. Print off the forms for the court of deputy ship, start a diary writing things down such as the date and time and name when someone told you she'd had no visitors for 8 months. But I would probably get legal advice too, certainly before telling the nursing home you want to move her.

Sorry it sounds like you have a horrendous day. How did you lose contact for 3 years? Was your aunt already struggling with dementia then? Do you have a relationship at all with mums other sister to discuss your aunts care? Just seems so odd that they would or even could stop her talking to someone she is close to then refuse to tell people where she is. Do they think you are after her money?

Dementia is horrible. Whatever you do take some time to think about what it will be like, the realities and practicalities. She wont get better only worse. Research the care home too as may reset your expectations if they are well rated or confirm if not.

You can't change the past - it was her choice to move near the other family members.
Is her care funded at all?
I would have thought care home would have checked her savings.
You can start investigating care homes near by. A warm room in a good care home with regular visits/ days out from your DM sounds the best option for her.

OP. I understand this is incredibly distressing. What your cousin has done is a cruel betrayal. I can’t advise on that, beyond seek legal advice if you can.

But please listen to PP who have experience of caring for people with advanced dementia. It is truly horrific

We spoke to the care home and they said she would be fine to stay with family as long as it was approved (they do not know the backstory and I did not want to divulge it).

I would want the opinion of a doctor on this too, not care home managers.

Definitely look into getting your Aunt moved closer to home. Your mum will be able to visit everyday. My wonderful Nan visited my Grandad everyday. Stayed with him all day. Fed him. She was able to ‘care’ for him in an environment where he could have his many complex additional needs met from experienced HCP.

I’m so sorry.

Thank you so much for your replies. I think if she can be moved close to my mum who can see her every day it would be the best option I agree.

We think they have taken and spent all the money and it is council funded. We were very close and she was close to another sister. But this bullying of her and insisting she hands out large sums of money has been going on 15 years. When she chose to move closer to the same people, I think a lot of people including my mum got fed up because the phone calls and crying were relentless but she just seemed a glutton for punishment. But no one foresaw this. I think we just thought when they had spent her money they would leave her alone and she would probably move back closer. She just never listened to anyone.

We last saw her three years ago and she was fine then. She used to speak regularly to an uncle of mine who lives abroad and she stopped calling him about a year ago. Since then we have suspected something was up but as my cousin and her mother do not talk to the rest of the family and refuse to we have struggled to find anything out until yesterday.

I think you need to make the large family aware of where she is and how she is and then start thinking of how to help. At least then she can have visitors while you sort things out. You need a lawyer though because they will know what you can do.

if you're cousin has POA and refuses to engage with plans to move her close to your mum, you need to involve asocial worker and argue that she is not acting in your aunt's Best Interests. This can be evidenced by their lack of interest in her, not visiting etc. If SW cannot persuade family it might need to go to court of protection. Meanwhile you need to be really clear as family that this is the correct move. If her dementia is not too advanced then maybe a conversation needs to be had with her about whether she likes where she is living. She might now consider that home to be her home and the careers her new family. If you move her, you need to understand that there may come a time that she has no idea who your mum is and may even be rude and aggressive. Will your mum still visit her daily at that point. If yes, it sounds like it would be worth doing.
It sounds like it was all about the money for the other family members. This is incredibly sad but very common. It also sounds a bit suspicious that she went from very wealthy in her own home to social services funded care within a few years.

Sorry this has happened OP, it sounds horrible.

But perhaps it would comfort you to know that this i wonder if the isolation and bullying has aggravated the condition or caused it wouldn't have happened. Dementia can affect anyone, even with the best family support. Also her changed appearance, while I'm sure it was shocking for you to see, can't be helped and is part of the condition, it is not symptomatic of a lack of care. For example, it might have made her happy to dye her hair in the past, but it wouldn't now, it would probably just annoy/upset her.

A care home closer to you, yes, but don't have her move in. It will destroy your home life, your relationships and possibly even your mother's health. It is a thankless and nigh on impossible task.
I am a bit confused as to why a family that you indicated was close should have no contact whatsoever for 3 years, unless there was a major fall out you haven't mentioned. I have a brother I rarely see and we are friendly, but not close. Just quick updates at christmas and possibly birthdays is enough to know what is going on with each other. Why did they stop speaking for so long?
It would be interesting to find out if your aunt is self funded. Wouldn't the care home tell you if you asked?

My mum would want to go several times a week if not every day to visit her and I just don’t know how she can Travelling over an hour each day to visit her would still take less toll on your mother's health than looking after her at home.

You are making many assumptions about her treatment and care. She may well have agreed to living in the home when she had capacity. It is quite possible that she has deteriorated, physically and mentally, over 3 years. Taking her into your parents home is simply not realistic. The level of care she now needs will exceed what they can offer. Visit regularly and send messages to your aunt. Would you be prepared to contact your cousin?

You the rest of your family had no contact for 3 years and suddenly you come rushing in to save the day? If your uncle hadn't 'heard' you still wouldn't be in contact. It's very hard to look after someone with dementia, they need 24 hour care, they can wander, they can forget how to toilet, how to eat, when they have or have not eaten. Council run care homes are chargeable if self funded c800 a week and there would have had to be a financial assessment done to see if she was self funding. You can't just put people in a home, there needs to be an SW assessment first. Generally SW try to let people stay at home with a care package. Leave the poor woman where she is being looked after and go visit her. She doesnt need visits every single day and if you are all so concerned and such a big family a rota will be easily established.

I really don’t appreciate your post Tarscout. If you’re going to make comments like that I’d rather you just not post.