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.

But you don't understand that the desire to step in now "daily", have her home with you.. might not BE in her best interests. She may get comfort from the care home routine, continue to not recognise you.. and physically you'll need to address the points I made about hoists, for washing, bed.. managing complex medication needs.. it's gruelling what you've proposed. It's probably going to break your family's mental health if you rush in, well intentioned but ignorant.

If your mum can't handle an hour or more on public transport to visit daily she literally has no idea what caring for advanced dementia looks like.. my family member who took on the daily care 24hrs ended up suicidal herself after 3 years, and that was with good respite overnight care every few weeks, council funded.

I do understand that and these posts have been really helpful. We are going to talk to the social worker about this and what is feasible or not. If it’s not feasible we’d like her to move closer so we can see her every day. I said it takes an hour by car. It’s more than two hours on public transport. My mum will do that journey - I know she will regardless of what I say - but it would be better and easier if she was much nearer. I know my mum would go every day and spend the whole day there or a large part of it.

I don’t appreciate posts saying we are trying to save the day. At the end of the day, whatever the comments on here this was a close family member who chose to cut contact and there was little we could do over the years apart from hope she came to her senses about what was happening. Posts that start criticising how close we are are not helpful. Unless the care home were lying to us that my aunt has been there for several months and that no one has visited her - this is not how we expected her to be treated and we are very upset and also now dealing with the guilt of maybe we should have intervened earlier. Although given none of us knew about her dementia or that this had happened I don’t know. Maybe we would have intervened and it still would have been the same. But it is a very sad upsetting situation all round. More than anything the fact that she did not have any visitors at all has been very hard to come to terms with. We expected that my cousin and aunt would have at least visited her themselves rather than simply leaving her. To find out they haven’t had made everything even worse. This is no reflection on the quality of care she’s received there.

If you think there has been foul play with regards to her money then you need to take that up, as has been said up thread.

But as others have said, moving a person with dementia to a care home is not a case of leaving them to ‘rot’ and people will be upset and offended by use of this kind of terminology. Home-based care is usually impossible as the disease progresses. Right now your aunt may be struggling with day to day tasks and need help with cooking and managing her affairs. But I’m afraid to say that soon she is likely to become aggressive or with occasional violent outbursts, she won’t know who anyone is, she will forget how to use the toilet, she will become incontinent, she will be unable to feed herself, she may be unable to walk. She might hallucinate for long periods.

It’s utterly awful and relentless. Providing care is not a decision which should be taken lightly. It would involve your mum giving you her entire life potentially for many years. It would make an hour long bus trip look like a walk in the park. I expect she is in a care home for good reason. By all means find one you prefer but don’t assume that nowhere is good enough.

I know it can’t have been nice to read but @TARSCOUT is right.

I wouldn’t wish a relative with dementia on my worst enemy.

If you want to understand what it really could be like, check out a FB group called Dementia Connections. If you think your mum could handle your aunt soiling herself, not realising and then walking shit round the entire house whilst your mum is asleep, cleaning it up and then finding the same thing happens again the next day then she is made of tougher stuff than me.

I have looked after someone with advanced dementia.
People always think of the mental problems and not the physical ones like double incontinence, or not knowing how to swallow.
Please don't take what TARSCOUT said the wrong way. Things can come over harshly when typed, but they are right.
You can't fix the past but you can make the present much better.
I think a really good care Home where people visit and check is the best option by far.

Actually what TARSCOUT said is true about the financial assessments.
Social services would have gone through her finances with a fine-tooth comb, and if any money has gone missing I.e. hidden to avoid care home charges, this would've been recovered and needed to be paid back.
When my Nan went into a home, ss went through a couple of years worth of bank statements and asked what large payments were for (she brought me a car).

Also, you need to consider that it may not be in your aunts best interests to have lots of visitors. Sometimes seeing family can be very distressing for people with dementia. Just because other family haven't visited doesn't mean they've dumped her there. You said they had attended review meetings. If they didn't care, they wouldn't have done that.

Why move her and cause more distress? Your aunt has been there some time and to move her for your benefit isn't fair. If she's that important to you and your mum then you can make the effort to visit. Also, if it is council funded, then you may not have any choice where she is anyway.

Oh this thread has brought back some bad memories, re not knowing how to swallow normal food and then having everything needed to be mushed up like a baby, for a once proud working adult who took pride in their appearance, dementia is one of the cruelest , most vicious illnesses

Re caring for people with dementia - a friend was determined to care for her much loved husband to the end when he was diagnosed with alzheimers. This came to an end when he started peeing and pooing in corners of rooms and then set the house on fire. The insurance claim was massive (smoke damage) and they had to move out for a while; that was when he went to a lovely home where he had full professional care until he died a couple of years later.
This is not an unusual story about dementia by any means!

I don’t have a problem with what Tarscout said about finances or care. I have a problem about her saying we’re rushing in to save the day and assertions about how close we are as a family. This is a very distressing time and comments like that are cruel and unnecessary. I explained that in a subsequent post. Please don’t start a pile on about it. At the end of the day these comments do more harm than good. I’ve taken on board what people have said about moving her and the level of care required and we will be speaking to the social worker about it.

As I have said financial abuse was going on for over a decade albeit with my aunt’s ‘consent’ and many family members tried and were unable to help her. It is no dissimilar to other forms of abusive relationships that people become trapped in that you see on mumsnet. It is very difficult in those situations when you are waiting for someone to leave but they won’t and isolate themselves further. I think the money for her has already been used and disappeared but we just want to make sure she is as ok as possible now. No one in the family knew she had dementia and this and the fact she was placed in a care home has been kept from everybody. Please don’t come on here with your own assumptions. It just does not help the situation nor make this a particularly supportive forum to post on when people are looking for advice and help.

OP Ask Mumsnet to move your post to Elderly Relatives.
Lots of us have been caters.

OP, people are taking their own experiences here and projecting. Essentially, from what you have said, she does enjoy visitors and recognised your mum, so it seems pretty clear that she has been dumped if no one has visited her since she has been there. Turning up for one review meeting was probably at the request of a social worker and does not suggest any level of care to me. Whilst it can be counter productive to move someone with dementia over they are settled, I would be led by the SW as the benefits of seeing a lived one on a daily basis would probably outweigh the concern. I am an OT and work in care of the elderly and where money is concerned I see shocking behaviour. I have on more than one occasion seen patients stranded in hospital with relatives refusing to have financial assessments ( who have poa) and those patients dying in hospital over a year later because they could not be moved without NHS taking family to court. I have seen people coming in on such a state because partner will not allow carers to assist as they are self funding and do not wish to pay. Family are often impossible to get hold of when you are planning discharge so again patient gets stuck in hospital and normally catches a chest infection or sickness from someone else on the ward. I know there is a political question here too but it sounds like your aunt was originally quite wealthy and probably could have been at home longer if not taken advantage of in earlier years. I agree with other posters that caring for someone with dementia can be incredibly difficult and I have experienced this, but every person with dementia is different and we should not generalise as some remain at home until their dying day, sometimes living alone with just carers popping in.

I agree with many of the previous posters that residential care is almost always the best place for someone with fairly advanced dementia. Most families have come to it gradually but you would be coming in new to a possibly difficult phase.
The suggestion of discussing with the wider family and a visiting rota would be lovely but in our case with DFIL it was just DH plus our DC who ever went while DSIL and DBIL just turned up at Christmas time if that. It may work for you.
If your cousin has taken the money the local authority would be very interested and they can look back over a very long periods as would social services but don't rush in about this until you are more sure if the facts and your emotions are less raw.

Thank you glitter. How do I ask for my post to be moved?

Ennith - I said at the start of my thread I was unsure if this was the right place to post. I posted for traffic and help. Really does it make you feel good to post a message like that.

Thank you to everyone else who has been understanding and given advice. I’m very sorry so many others have experienced this.

Thank you very much vdbfamily. Your post made me cry. This is exactly what we feel has most likely happened. I don’t think any of us believe it would have progressed to this state if she’d had proper care and support and she was so happy to see us yesterday and the staff’s surprise and support for us visiting more often and asking us to bring pictures of her make it seem even more likely that she has been dumped there and just left. This is absolutely not a reflection on anyone else who has had to use a nursing care. I understand that it is needed but in this situation we just feel it was used as a way to abandon her. Yesterday the care home said we could have her come to stay at the weekend, but we will speak to social services and see what is the best way forward.

Fiftiesmum - I agree. We won’t do anything until we feel less raw about it all but we will be speaking ASAP to the social worker tomorrow.

@Soupset2020 you honestly sound lovely, and obviously you and your Mum care very deeply about your Aunt. I know you are going to talk to social services and the care home about this. But can I just share my utter screw up over Christmas when I was trying to be kind?

So MIL is late mid stage at the moment, she mostly knows who we all are, but she obviously can’t read anything anymore, her brain fills in gaps and she has the memory span of maybe 5 minutes. So I thought foolishly as it’s probably going to be her last Christmas that we can take her out and about we could as a family all go out for a meal. It’s been a few months and I wanted to treat my in laws.

Booked a restaurant we’d been too before many times, and FIL said they were excited to get out for a bit (he’s chosen to have no respite care, still in a lot of denial it’s happening so rarely gets a break or trip out).

What a mistake, from the moment we sat down I knew we’d done the wrong thing. She got upset, too many people, too much noise. She was given a menu, can’t read it, can’t remember what she likes. A tiny bit of her brain was clinging on to the knowledge she needed to make a choice, she couldn’t do it. FIL has Aspergers and denial so kept trying to get her to read the menu, she gets more upset and starts crying hysterically because she can’t choose a meal. In the end I managed to calm it down and say just two options off the list of 50, she was happier then but forgot what she ordered by the time it came. Then said she hated it!

But the whole thing was a nightmare for her and I felt horrible about having taken her there. But we just didn’t realise how bad she’s gotten, we see them fortnightly and her deteriorating is happening faster than we realised.

So what I’m trying to say is don’t do something like take her somewhere she used to enjoy, or do like the hairdressers for example because it’s very possible she can’t do it anymore. Know her limits and understand you might not be able to take her home for a weekend, it could actually make her worse without you meaning to. It took MIL a good couple of days to feel better after her meal and I feel awful about it

Thank you coughsyrupsucks. I understand. I think you’re right. We won’t try and recreate anything and just let her do what she’s happy to. We went back to see her and she kept asking if she was coming back with us. And when we said not yet she said “oh no space”. It is very upsetting. I’m dreading this whole process. We just want her to be home and around people who can work around her. Thankfully the social worker thinks she may be ok to come back into the community especially if there is a big family who can take on caring for her however she said it depends on what my cousin says and what they review as my cousin is the only person listed as family for my aunt so they are now having to allocate a case worker to review everything.

OP can you care overnight for your aunt? Or can any of your family?
Most people with dementia 'sundown' which means they are at their most active at nighttime. This is why being in a care home is usually the best place as they have staff there overnight to check on people.

Will you be able to change her adult nappies as she loses continence both ways? Can you wipe her bum? Sorry to be crude, but it's hard doing this for someone you love, and if she's still having lucid moments, embarrassing for her.

Could you lift her in the bath or shower? If she has a fall, could you move her safely?

There are so many things to consider.

Caring for someone you love with dementia is soul-destroying. And demanding. You won't be able to work. She will need 24/7 care. Impossible if you have your own family.

Just a thought re power of attorney-as someone else said,you can check by filling in a form on the office of the public guardian website. I have just done it for my Nan and it only took a few days for them to email me the search results. If no POA exists, maybe this could be set up?

With regards to having your Aunt home -I would advise looking at care homes near to you/your mum. This way, your Aunt gets care and your mum and co can visit daily. Sometimes, a care home is absolutely the best thing for all concerned. Caring for someone with dementia is mentally and physically draining - if you have a job/family etc. it's even harder.

There are many good care homes-have a look at a few and see where might be best.

Sorry but I think it's very naive to assume she will be able to be happily moved out of somewhere she's now used to into a totally new environment, much less that you can care for her appropriately, not just now but in the future. Are you really doing this for her or are you doing it to alleviate your own guilt? Because unless you can provide the level of care she not only needs now but will need going forward, and dementia can move very quickly, then you risk bringing her out of a safe environment and then having to relocate her again in a short space of time because her needs are too great, which would be even more traumatic for her. Not to mention putting her into a potentially unsafe environment in a home that is not set up for someone with such complex needs.

I know it's upsetting. I've had several close family members with dementia. But they have all had to go into a home, no matter how committed we have been to caring for them, because it was not safe otherwise.

A care home nearer you where your mum can visit is a much more sensible option for everyone.