Need help with, well, pretty much everything (Long post, TW)

Hey, I’m new to the forum, and honestly, new to all of this. I signed up here because my friend recommended it and figured it might be of some help. At this point I could use all the help I can get, because I’m in a pure nightmare of a situation and I have no idea how to cope with it or what to do. It’s getting to the point where just ending it all seems like the easiest option.

I don’t know where to begin with explaining this, so I’m just going to dump the whole sorry story. This will be long, so sorry in advance for that, but I really don’t know what to do.

My mum (mid sixties) had been showing signs of dementia for a few years, but over the course of the various covid lockdowns it took a massive jump in severity. My mum is married to her second husband (my dad died a while back), and pre-covid she spent her time between the family house where she, my brother, and I live, and her place with her husband. It worked well enough, and then lockdown hit and she was stuck there for pretty much all of 2020.

Now I don’t want to speak bad of her husband, but the guy has a wealth of issues of his own, and my mum was his official carer. I’m not sure what kind of relationship they had behind closed doors, but a part of me has always been suspicious of him.

So it gets to January of this year, and long story short, we get a call from my aunt (my mum’s sister) saying her husband has called an ambulance on my mum and is trying to put her in a home or something. Thinking this was an over reaction, my aunt picked up my mum and brought her home to live full time again with my brother and I.

Fast forward a few months, and its become clear that my mum has begun to succumb to full on dementia. She is confused all the time, angry, forgetting where she is and not believing us when we try to explain what’s going on. We take her to the memory clinic and begin the process of getting her diagnosed and getting some help, but the process is terribly slow, with weeks between any kind of contact. As the time goes on she continues to deteriorate. I have to cook for her, wash her clothes, make her tea, help her into the shower. We suspect she is becoming incontinent. Here’s the kicker though; she refuses to accept that anything is wrong. She insists she is fine despite the fact she can no longer do almost anything by herself.

All the while, this is beginning to break me. My brother has autism, and isn’t able to really help with the situation. In truth he is making things worse, constantly clashing with her and unable to really connect with what she is going through. I’m having to play peace keeper between him and her, trying to make sure they are both ok and looked after. No one is helping. This was at a point where we were still unable to met people because of covid. Worse still, my aunt, the only one of my mum’s seven siblings who knows/cares what is going on with mum, is a fan of downplaying covid (despite the fact that she no has no sense of smell or taste due to her own infection). She wants me to let my mum go out by herself, to let her go meet friends, to do all this dangerous stuff that could led to her getting injured or infected. At this point, my mum believes she is living at her childhood home and doesn’t understand where we are or how to get back here. She doesn’t wear masks and doesn’t understand why we have to be careful, going so far as to actually lick her fingers while we’re in shops. If my brother and I had got infected, there would be no one capable of looking after her, a fact my aunt doesn’t understand either. My aunt gets increasingly hostile, going so far as to say my mum would be better of dying from covid than living with us, yet won’t offer to take on caring duties herself. Of note, we did take her out shopping with us or for walks, but neither my brother or I have the energy to do it every day and we were both still wary of covid, and even when we do take her out, she doesn’t remember and insists on going out again. As covid restrictions lessened, two of her friends did come to see my mum a few times and they sat in the garden, and we did end up making a support bubble with my aunt, though this was something that continued to make me uneasy due to my aunt’s views on the virus. My aunt only saw her once (to be fair to my aunt, she was the one giving us lifts to appointments [x2/3?], and was going through her own stuff too).

So fast forward to a few weeks ago. Things come to a head. Mum is increasingly lost, now full on hallucinating and getting massively distressed. She doesn’t recognise my brother or me, believing her real children are being kept from her in the actual family home. She is having daily breakdowns that involve crying and screaming, to the point she is shouting out that she has been kidnapped. The only way we can calm her is to call my aunt or one of her friends, because she doesn’t trust us and won’t listen to us. She is becoming violent and suicidal, trying to grab knives and almost stabbing my brother with a fork. She is waking up at 4am and wondering around the house, so none of us are getting sleep. We’re having to cover up the cutlery with tea towels and lock our bedroom doors because it’s the only way we can get a break from her and the only way we feel safe. Her delusions continue to worsen, so much so that she is trying to climb out windows and refusing to come into the house after we take her shopping. I had to go wondering around the streets with her for two hours because she wouldn’t come in the house and we had to wait for one of her friends to show up to talk her down.

One weekend we get a visit from mental health nurses. They see her and instantly say she needs to be assessed by a full mental health team in a hospital. The decision is out of my hands, but there’s no space at the moment so they say they will be in contact after they arrange a way to get her to hospital. Mum seems to be having a good day, and we need to do the weekly shop, so I take her with me. She is fine until we come home, at which point she massively kicks off and starts screaming, threatening to shout out rape if we come near her. The neighbours are looking out the windows, and she is trying to walk off, refusing to accept that this is her home. With no other choice, I call the mental health nurses who had come round earlier. They force me to call an ambulance while they call the police. It all kicks off. They ambulance and police turn up, and, not sure what to do, I call my aunt. She turns up to with my cousin, her daughter. My aunt is insistent that she not go to hospital, not go into a home, nothing like that, but the paramedics take my mum to hospital. I refuse to go to the hospital, because its all too much for me at this point and all I can think about is how the last time I saw my dad it was dead in a hospital bed. My aunt and cousin flip out, saying I need to ‘man up’ and that I should be ashamed and am a disgrace of a son. My aunt’s other child, her son, calls me up and threatens me with violence unless I go to the hospital.

A day later my mum is sectioned, and is now is being held for a minimum of 28 days while she is being assessed. This brings us up to the current moment. My aunt initially was very hostile to me, refusing to tell me anything that was going on. I only found out what was happening because social services called mum’s husband because legally he is next of kin, and he told me what was going on. He is trying to be supportive of us, but is unable to help because of his conditions and he can’t drive. I do hear from my aunt, who says she is going to take control of everything and is going to get power of attorney and get my brother and I kicked out of our house so mum call live here with 24hour care, as well as more passive aggressive comments.

So that’s where I’m at now, but this story isn’t done. Over the last few weeks my aunt has seemed to chill a bit, but for obvious reasons I don’t 100% trust her. The doctors at the dementia ward my mum is being treated at won’t tell us anything more than they are assessing her, but I’m only getting bits of information because the main contact is now either my aunt or my mum’s husband. Side note, I haven’t told my aunt about the threatening phone call I got from her son, and for now I’m doing everything I can to keep her on side by leaning into the fact that she seems to dislike my mum’s husband more than me.

I don’t know what to do now. My mum can’t come back to us, because there’s just no way we can cope with her. I went to visit her in the dementia hospital and it took her five minutes just to recognise me, and then she spent the rest of the visit confused, upset and crying, ultimately only calming down when her ‘boyfriend’, one of the nurses, came to take her back to the ward. My aunt has said she is looking at homes, but I feel like she still wants my mum to come back to us. She doesn’t understand the situation we were in.

For over a decade, I’ve struggled with my own mental health issues. Dissociation, schizo-typal disorders, depression, suicidal and self harm tendencies, all things that have been messing me up for my entire life. I won’t get into my history, but suffice to say I’m not what I would consider a stable person. During my time looking after mum I started self harming again and was actively thinking about suicide. I wasn’t sleeping, was barely eating. The most annoying thing was, before all this I was actually getting to a point where I felt like I could actually start moving forward with my life again. Now it feels like I’ve taken a huge step backwards.

To make matters even more complicated, my relationship with my mum was already bad. The horrible, sad truth is, I don’t really like her, and I hate when I have to say I love her just to keep people happy. She was at best neglectful and at worse emotionally abusive, and if I’m being honest I hate that she has put my in this position. I hate that there isn’t going to be a chance for me to fix my relationship with her because she is effectively already gone. I don’t want to be her carer, because I can barely look after myself and my brother. I was more a parent to him growing up than our actual parents ever were. My brother and I tried to get her to go and get help when she first started showing signs of dementia, but she refused. And now all I can think about is, did she ever love us if she wouldn’t even listen to our concerns and worry for her? It burns me up inside when people talk about how nice she is, when all I can think is where was that with us? Honestly the only reason I tried as hard as I did was because of general human empathy and not wanting to see her suffer, because at the end of the day she is still my mum. But I can’t be one of those people who gives up everything in their life to be a carer, especially for someone I’m not ever that close to. More power to those who can, but it’s just not me. I feel like I’ve given all I can. But yeah, this is also an issue with my aunt because, according to her, I don’t work so I should be able to look after my mum regardless. I don’t think she cares about my mental health problems, or even believes they are real. She and her children just think I’m a lazy waste of a person who sits around and does nothing all day. Sorry about the tone of this paragraph, this particular issue is very messy for me.

Anyways, the crux of the problem. The family house where my brother and I live is rented from the local council, and its in my mum’s name. Years back, my mum tried to get the council to transfer the tenancy to me but they refused because it was already transferred to her when my dad died. When she goes into a home, I fear the council will ask us to leave, making us homeless. What’s worse, I have no idea how to pay bills, no idea how to make a budget. My brother and I always gave mum money and it all came out of her account. I don’t even know if my brother and I bring in enough money with our various benefits to cover the cost of living here, but I don’t know if we’ll survive moving, especially my brother, as it looks like he too is unable to live by himself. This is the only home either of us have ever known, and I’ve lived here my entire live, 30 years (I’m turning 30 this year).

What do I do about my mum? How do I tell the doctors she can’t come back to us, that I don’t want any of us to suffer? Like it’s not even just the fact that I don’t think I can keep her or us safe, it’s about quality of life too. She was miserable here, and even if we have carers come in to help, are they going to be there all the time? At 4am in the morning when she is crying her eyes out because she thinks she has been abandoned? I’m not close to my mum, but damn, I don’t want to see her like that.
What do I do about the house? When do I tell the council? She’s still getting carer’s allowance for her husband.
How do I get my mum into a home, and how does that get paid for? None us have any money or savings, and my mum doesn’t have a will. I believe she has gone past the point of being able to make decisions for herself.
How do I deal with my family? They already hate me and blame me and my brother for all this, and can’t understand why I’m not jumping at every chance to go and visit my mum in the hospital. I’m not even sure I even want to see my mum again. It’s very painful, and only seems to upset her.
And what about all my mum’s other hospital appointments? She still needs to have her second covid jab, and she was on a waiting list to have her gallbladder out and a knee replaced. What happens to all that stuff now?

I just don’t know what to do. I just want everything to stop. In the back of my mind I just have this horrible voice saying that the easiest thing would be if I just died. I don’t want to listen to it, but I fear it’s going to get to the point where its the only thing I can hear.

Anyways, sorry for the book length post, I’ve been holding this in for a while. I guess this has been as much a rant as it is a cry for help. And you know what’s nuts? This isn’t even all of it. Any advice or tips or anything would be great.

TL:DR - Need to put my mum into a home but it will probably make my brother and I homeless and trigger my own mental health issues. Plus my family hate me for what’s happening to mum and blame me for it. Suicide is looking like an ever increasingly attractive option.

STOP! Take a breath. Nothing is going to happen in the next few weeks. Mum will NEVER be able to give aunt Power of Attorney, as her dementia means that she lacks the capacity to grant it.
Aunt sounds to be pretty horrible, keep her out of this as much as possible!
You cannot be thrown out of the house without a long drawn out legal process, which won’t start until mum’s future is decided by the hospital. If she needs residential care, the council and hospital will sort this out.
I don’t know where you live, or what the housing situation is like. Are you and your brother on the housing list?
Start looking at private rental property, and ask the council how much Housing Benefit you will be entitled to. My son with severe learning difficulties lives in a privately rented property, the bills are paid by standing order. Do you and your brother each have bank accounts? Do you want to be responsible for your brother, or live alone?
It’s easy to feel overwhelmed. Find a lever arch file, a hole punch and stapler. Think of it as Project Future. Keep all your papers in the file.
How organised is mum’s paperwork? Start sorting out asap. Junk mail into recycling. Bills in another pile. Anything you are not sure about, ask us. Don’t even think about doing it all a once. Half an hour morning and evening may be all you can cope with. I’ve had to tidy too many houses. Also start to think about your own stuff. What will you want to take forward to your new life. What is old, broken, doesn’t fit, then bin or give to a charity shop. You CAN deal with this. Don’t panic.