Hi there, sorry it’s a long post I hope no one minds. I don’t have anyone to talk too who really understands my situation.
So my maternal grandmother was the first one in my family to get Huntingdon’s Disease (HD). My great-grandparents lived till 89 and 95 and were very healthy so it didn’t start with them, unless my great-grandmother had an affair.
She was diagnosed in about 2004 after breaking her wrist from a fall for the second time in two years. She is still alive but just about, she cannot talk and she is fed through a tube and has also had pneumonia.
My mother and uncle have never been tested. My uncle is coming up 40 and my mum is 48. She was too frightened to get tested originally.
I am 25 and went to Uni for three years. I have now come back. When I first went halfway through the year my mum got made redundant from the job she’d had for 15 years because the factory closed. Before that, she would sometimes come back from work and go to bed straight away at 5PM and not come out till morning. She would cry a lot and started to complain she was getting shouted at all the time for making mistakes and it was crushing her self-esteem. I tried to encourage her to go to the doctors about her mental health but she did not want too. I did think maybe its HD but did not think it was my place to say or to speculate. Now I know that was almost 100% the reason why she was making mistakes.
Once she was made redundant, because of her long service she was given a year’s pay. She said she wanted to stop working for a little while and enjoy some free time. After spending her whole life working and single handily raising two children who could begrudge her that.
Fast forward a year and she was starting to run out of money. At my paternal grandmothers funeral, which my mother attended as they got on well, everyone expressed to me that she seemed very ill. I hadn’t seen her in a year and completely agree, I was mortified about how much she had changed and how bad her tremoring had got. It had become obvious that she has HD. Even my paternal grandmother said before she died to my mother that she must see someone about her shaking I still didn’t want to say anything but I felt I had to encourage her to get tested. She cried lots and said she would do. Instead, she told me she had gone to the doctors and was told she was all clear. I was confused because one look at her tells you all you need to know – and it would never be that she does not have the disease. When I spoke to my sister (who is 20, but has learning difficulties which make her mental age more like 13-15 and is unemployed) on the phone she said my mum was lying because she never went out of the flat at all in the week she had the appointment.
My mother eventually admitted it but it took a while. I asked whether she was going to go to the jobcentre and she would say she would but would never follow through. She would say she will get tested but never followed through. She had run out of money completely in March 2018 and had become overdrawn by the 3,000 she was allowed to. Madness for a woman who all her life was penny savvy on her low wage and had never accrued debt in her life. I started to try to communicate to her and she would get very very angry,she had hit my sister, when I had visited and expressed things she had shouted and swore at me, told me “GET THE FUCK OUT OF MY HOUSE NOW!” she would become defensive and agitated. And her symptoms were getting worse and worse.
I told her to go to the job centre and told her she was going to get made homeless, have her electric cut off, she couldn’t afford food and was getting cheques from my great aunt who lives on the other side of the country until she could no longer afford to do so. Despite all this she said she’s fed up with employment, she’s fed up with life, she doesn’t want to get tested or to go to the job centre. My sister would say to her “Mum, what are you going to do when you end up homeless?” My mum would say “I can’t wait for it, I can’t wait to get out of this dump.” My sister would say something like “But you’ll have no electric, no heating, you’ll be on the streets.” My mother would still reply, every time, that she can’t wait. My mother also used to remove the wire from the phone so I could not call her. Eventually, her phone was cut off so she didn’t have to worry about this anymore.
I started to call people from March 2018- October 2018. I did it constantly, her housing association, doctors, social services, about 7 different social workers. I told them she was ill, she has a 50% chance of having the disease anyway. Its obvious she has it. That she is living in complete and utter destitution and we don’t know what to do.
I was told every time there’s nothing they can do because it’s her decision.
I would PLEAD with them to section her, as someone who reacts with violence to any kind worded, softly spoken advice, as someone who has completely neglected themselves, as someone
I would say that she has a disease which LITERALLY CAUSES HER BRAIN TO DECAY. She has a disease which causes dementia. One of the core symptoms is it erodes rationality. I got a woman from the ‘Huntingdon’s Disease Association to go and visit’. She was shouted at and verbally abused by my mother, which I had told her to expect. She said to me that she’s been doing this for 20 years and would 100% verify to any doctor she has every symptom of the disease.
The water is cut off completely, the electric is still on for some reson even though it’s not been paid in ages, my mother owes £4.8k in rent. She probably owes another few thousand on utilities. She is overdrawn with the bank by £3,000. This week, the housing association (who I have spoke to recently and who will be visiting me on Wednesday) have said they will be taking her to court to apply to evict her.
Now I am back in a town I hate, having gone from living in one of the nicest areas in London whilst studying, to a town I hate and feel alone in. My girlfriend who I had lived with throughout uni broke up with me in October. We stayed living together until last week, and she did say maybe we’ll get back together if she has time to think. But I have Borderline Personality Disorder myself and it hit me really hard.
I am living in destitution. I am lucky that I had a student loan very late and just before I came back. But I had 2k and in two days, I’ve had to buy everything, my own curtains because they had fallen off because the place hasn’t been redecorated in years.
Now it’s eaten away the bulk of the money I can use to get away. I can work and save, but I’ll only be able to afford to do that if she isn’t evicted. My mother would not physically allow anyone in the flat, and would react aggressively towards anyone who was allowed in by my sister, then slap or drag my sister by the hair.
I am a carer without any allowance, because she’s not diagnosed as disabled. I am at my wits end. After me and my girlfriend broke up in October I tried to overdose on paracetamol. Now I really wish I had died then.
Al I can think off is killing myself because NOWHERE is helping me. My family have no idea what to do. We don’t have money and no where is helping at all.
As if it isn’t hear breaking enough to watch your mother suffer a slow death, watching a loving person turn into someone so hostile and in denial, someone who used to work so hard decide they don’t care about anything in life. Someone who was independent enough to say she did not want free school meals for me and my sister even though she was poor, turn into someone who begs their children who barely have enough money to sustain themselves for food everyday.
My mothers doctor is coming over tomorrow – but she will do what ahs happened whenever anyone goes to see her and run out of the door, probably become aggressive to me later.
I’ve got 4 uni essays due in within the next fortnight – all of which I have done no work for. I was on course to finish with a high 1st, now I think everything will be undone because of all this shit.
I just keep crying all the time and my head hurts really bad. The flat is awful and there is so much noise pollution from neighbours.
I am really hoping someone might have some advice – if so, I of course would love to hear it. Even if it’s just redirecting me to a different forum to post this on.
I am also sorry about how long this post has been, but to anyone who has read it thank you so much just for that. I’m also sorry if I repeated stuff a lot, I have ADHD and Dyspraxia which makes structuring my writing difficult sometimes, and it’s not helped by the stress and needing to get back to working on my essays fast!