My ill mother refusing to get tested for Huntingdon’s Diseas

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!

Craig, welcome to the forum.
Have you explained to uni what is going on at home? Are you in your final year?

What mum is doing to herself is terribly sad, but it’s so important that you recognise that there is nothing you can do to help her at the moment.

Presumably you are living with mum and your sister at the moment. Can you tell me a bit more about her situation? Is she claiming any benefits herself? Does she get any help from her Learning Disability Team locally?

Any minute now the proverbial is going to hit the fan, as I’m sure you know. IF your sister is on LD Team raidar, then they might be able to arrange for the tenancy to be transferred to her, so she gets the Housing Benefit rather than mum. (My own son has LD, now 40 but can’t read or write, due to brain damage at birth) .

Hi Craig,

There are three people at risk here: you, your sister and your Mum.

For yourself, please go to the Student’s Union or your personal tutor tomorrow, explain the situation and ask for help. If you need to talk to someone today, please contact the Samaritans. Contact Us | Samaritans

It’s no longer suitable for your sister to live with your Mum, please contact the emergency adult social care number in your area (look on the council website,) and report a safeguarding concern.

For your Mum, you sound as if you have involved a lot of people, let them take over. You are right, she probably does need sectioning, but whilst you and your sister are there you are at risk too, plus you are partly masking the problem.


Do NOT feel guilty because you haven’t caused mum’s situation.

Hi , thank your for your kind replys. I did not expect any so fast.

I have spoke to my uni and have already got mitigating circumstances. It might be possible for me to ask for extra time (they offered me longer before but I said I’d be OK with just three weeks).

I am in my third year and I have just moved back.

@Bowlingbun I should have said, my sister moved out a few months ago - both because of the risk of homelessness and because of my mothers aggression to things she doesn’t like. She now lives in some kind of supporting living temporary accommodation kind of thing and has a support worker who checks up on her.

My sister does not have an official diagnosis of learning disabilities. My mum has them herself as well I would imagine, but again that has not been diagnosed. I pushed hard when my sister was around 16 to get her social worker to test her for autism and learning difficulties because it would help her get support, but again for some reason they didn’t listen. I guess maybe it’s because I was only 20 myself at the time so they didn’t want to take me seriously.

My mum has been perfectly lovely since I got back but I know if I push her too much she will flip, maybe even tell me to get out, which she has done plenty over the years.

@Melly1 I have tried my best to get people involved but it never actually progresses. My mum hasn’t been opening the doors to anyone and won’t allow the doctors to visit. I will have to see how it goes tomorrow but I know she will storm of and they probably can’t make a diagnosis based of a brief look. I have tried reiterating to so many people that she needs sectioning.

When ever I have called social services to ask them to consider this a safeguarding issue they have told me if she doesn’t want help there’s nothing they can do.

If she doesn’t get help I will have to care for her and I can’t afford that. I want to do a Masters degree and save up for a year - not care for someone because no one will help her get a diagnosis.

They frame it as an issue of her right to manage her own health. I read the care act and there are contradictory things. It (as I’m sure you all know) reiterates quite a lot that individuals should be empowered to manage their own care and make their own decisions. There are parts about neglect and ensuring people do not fall into it, but I don’t think hey are prepared to consider self-neglect.

Of course, I understand why those rules exist. But if someone’s in a frame of mind where they are content to go without food, with the risk of homelessness, with letters through the door, no tv or anything to do, and live in a self-imposed prison it’s clear they are not in a healthy state of mind.

It’s a catch 22 where if she had a diagnosis they would have to look after her completely and accept what she has. But they won’t section her despite what she’s doing unless she’s diagnosed.

Thank you for your replys again. It’s so nice to just get it off my chest - if I knew about this place I would have joined when it all started to go pear shaped!

I should add I am genuinely concerned this has all the hallmarks of one of those cases where a relative keeps ringing alarm bells and inaction is followed by the loved one dying with an inquiry taking place after.

This applies to you just as much as it does to your Mother. Imo she has a moral duty to you to get her problems diagnosed and medicated.

Thank you Ayjay, I do agree. But again, besides being frightened at the prospect - Huntington’s causes all kinds of irrational thinking and personality shifts.

She used to be so careful with money and so loving towards me and my sister. She’s been nice but when she’s confronted with things she has said she wishes she never had me and my sister.

Of course, I know that’s not true and that she’s just ill. But it really hammers home how bad she is.

I don’t even know if she can fathom the morality and rationality of anything anymore.

We are receptive to your post. I think your mother needs to get a proper diagnosis and that seems to mean an HD test, if one exists. Only then will she stand a chance of getting appropriate treatment.

Thank you everyone once more.

I have thought about getting myself tested and am curious as to whether they would accept the way the disease works is if I have it my mum by default has it also.

But at the same time I feel terrified of doing so and like I could never live with it.

Whenever I think about that it makes me feel like such a hypocrite as well for wanting her too so much.

Very confusing emotions all around.

This forum has been a god send though and I really appreciate it.

The Samaritans are there 24/7 for anyone feeling or talking suicide. That includes the people around too.
There are several ways of contracting them and I suggest you keep contact details by you at all times and make sure that Mum has the details too. Encourage her to use them, yourself too. You don’t have to go through this alone.

Phone number is 116 123

Hello Craig

Welcome to the Forum. I’m sorry to hear that you’ve been having a really difficult time recently, but glad you’ve found the initial supportive responses from other Carers UK members helpful.

As well as contacting Samaritans and the student support and wellbeing team at your university, we would also suggest that you contact the following organisations:

  • Carers UK Helpline - at any time or call 0808 8087777 (Mon-Tue 10am to 4pm)

  • Huntington’s Disease Association Their specialists advisors can be contacted on 0151 331 5444 or email

  • Calm or tel: 0800 58 58 58.

  • Rethink helpline on 0300 5000 927 Monday - Friday 9.30am - 4pm

  • Mind info-line 0300 123 3393 or text 86463

We wish you well with addressing the situation with your mother and with your own health and wellbeing.


Hey I really didn’t want to read and run as HD is also in my family. I’m at work, but will read and post properly later.

PLEASE call the Huntington’s Disease Association as suggested by Michael. They have been really helpful to me and my family in the past.

There may not be masses you can do for your Mum, but please take care of yourself. Speak to your Uni and explain your situation.

I’ll post more later x


I really wanted to post properly having read through your post. I can so relate to you and want to give you a big hug.

PLEASE phone the Huntington’s disease association. They have regional advisers who have seen it all before and will be able to give you some help. Phone head office and they will put you in touch. They will also understand how you will be feeling dealing with this and your own at risk status. Even if she won’t test I think you could still get a referral to a HD specialist given her behaviour and symptoms. You could even get a referral. yourself via your own GP. Given the genetic nature of the illness our HD specialist viewed Dad’s referral very much as a family affair. They were lovely and gave us so much amazing advice. This doesn’t mean you have to get tested if you don’t want to.

PLEASE also live your life. I live at risk of HD myself I was a little bit older than you when I found this out and I make every effort to live every day to the full. You can still be there for Mum, but as a care planner, not giving up your university education and own life to care yourself. She sounds like a loving mum who really wouldn’t want this for you.

Also there is every chance that a cure for HD is on the horizon, so hopefully if you have the gene they will be able to silence it. There is so much hope going forward.

Please contact me if I can help in anyway. I can fully relate to how scary all this is.