To be worried about my friend and her partner with Huntingtons?

[Stanwyck]

My friend J has huntingtons. Lovely man, not a bad bone in his body before the illness.

Through him I met S, and they started dating. Two weeks after they started dating, he revealed to her he had huntingtons. At the time I hoped she wouldn’t stay with him because while I sympathised with him, it was early days and I knew how bad it would get and would be a carer at 40ish.

Now he lives with her and he is deteriorating. While she sought medical advice, they said they didn’t think he was depressed and provided no medication.

Yesterday she admitted she is sometimes scared of him. He is pouring water in her shoes to stop her going out, hiding her belongings, having tantrums, being nasty, smearing food on walls and she is struggling.

I don’t know what to suggest or how to help. Does anyone have advice?

It’s a terrible, terrible disease and extremely difficult for everyone involved. An assessment by adult social services would be prudent at this stage.

I’m sorry your friend is going through this.

She needs to contact social services urgently, and also his medical team and be completely honest about what’s going on. If she feels unsafe or at risk she should call 999 immediately.

Patients with HD do experience behaviour and personality changes as well as their physical symptoms. They sometimes need to be admitted to hospital for a psychiatrist to work in conjunction with their neurologist to control their symptoms.

She should not continue in the relationship out of obligation, easy as it is for me to say.

A couple of responses on here just show the dangers of getting advice on Mumsnet.

Professional advice is the way forward for your friend.

She does not have to live like this
Live separately so she can walk away to safe place when behaviour is bad

Even though this controlling behaviour is caused by his illness she shouldn't have to put up with it. Living apart would be safer, I assume he isn't able to work so isn't contributing to the household.

The Huntingdon's Disease Association has a forum.

The thing about being angry with your friend abotu disclosure... A lot of people don't really understand what it is and it can be stigmatising and frightening to have to tell people as they've suddenly got a big piece of your medical situation and you don't know who else they're going to tell or if they'll react in a damaging way. You can't untell, so he might have wanted to see if the relationship was likely to go anywhere before making a disclosure.

I've got a relative with HD who went through a period of behaving strangely before being diagnosed; they need to speak to his consultant.

@Bananalanacake he has some income from business which someone else now runs because he can’t. But not a lot I don’t believe compared to my friend

he also has an inheritance, again not sure how much.

I just hate hearing that she is scared. As a friend I find that so hard. I need to be tactful as her friend. I worry that advice could backlash if she thinks I’m suggesting dumping him.

The Huntington's disease Association have regional specialist advisers and can offer support through local groups, a message board etc: https://www.hda.org.uk/
Its a cruel disease and some of the symptoms you describe are sadly not unusual

Rather than trying to work out what is abuse vs disease symptoms, it might be more helpful to get support to consider what her basic needs are and put strategies in place if these boundaries are being crossed. There are some things nobody should be expected to do without, like a certain amount of respite time, ability to keep her job, or the ability to feel relaxed and safe at home. Some of these may be already compromised in which case she deserves professional help, in the same way as she would if he was incontinent and she couldn't cope. How that is to be obtained in the current state of public services I don't know, it sounds a dreadful situation.

Whatever the cause, she is being abused. I can understand that she doesn't feel she can leave and it is very hard for you to know how to support her. If she is actually scared that he will harm her then she needs to accept that this situation is intolerable for both of them. What would she expect if their roles were reversed?

The Huntingtons Disease Association is a good starting point, they have specialist advisers but he will have a dedicated Huntingtons Disease specialist team that he should be seen by.
From the behaviours described, it sounds like he may have developed psychosis and this is treatable but he needs to be assessed by a psychiatrist. Adult Social Care referral for some support and care essential, suggest OP you advise your friend to explain to social care she is not the carer and she hasn't signed up to be so otherwise she may well be told they can't help.
Depending in his status he may be able to make a claim for PIP, Citizens Advice or local welfare rights teams can advise further.
It is a horrible disease, please encourage your friend to access as much support as possible as its a tough journey ahead if she decides to stay with him.

Some helpful advice has already been shared. Please ask them to make contact with the HDA. There will be an adviser in her area who can advocate on their behalf.

they can also approach their GP. Medication can help relieve some of the symptoms. But personality changes can be part of the disease for some. Your friend can update GP of the situation but of course nothing confidential will be shared with them. Hospital team can also be approached. If there is no specialist service local bigger cities have great HD teams. London St George’s and queens square are excellent as are of teams in Cardiff. Manchester. Birmingham and Leicester etc. get googling there is help out there.

The HDA have peer support for carers and local branches for family members to join to reduce feelings of isolation. Training webinars and a youth service for any younger family members to access.

I hope they can get some advice and input soon.

I feel so sorry for your friend but if she's not willing to think about leaving, she does need to get more support in place. If she is feeling scared of him, that is a worry 😟 I would recommend she gets in touch with Huntington's Disease Association to talk through her worries and get some help.

As her friend, all you can do is be there to listen and support her. You can offer your spare room for a night or two if she needs a break and suggest maybe paying a carer to stay with him?

@Endofyear she lives far away from me (flight required) so it’s tricky.

I asked her a couple of times to come and visit me for a few days (I visited them last year) and she didn’t take me up on it because she felt she couldn’t leave him alone.

I don’t think she realises how important respite is going to be and I personally know how hard it can be to convince an ill person to accept help to begin with. I will talk to her about it.

Men leave much much faster. It's a thing.

A link below before someone accuses me of sexism.
https://pubmed.ncbi.nlm.nih.gov/19645027#:~:text=Basic%20demographic%20information%20and%20data,of%20life%20were%20adversely%20affected pubmed.ncbi.nlm.nih.gov/19645027/#:~:text=Basic%20demographic%20information%20and%20data,of%20life%20were%20adversely%20affected.]]]]

Not saying it's good or bad. Men have a stronger sense of self preservation, women are conditioned to be carers. (This is my interpretation)

Does she really want to be his carer? After a lifetime of togetherness - sure. But at the start of a relationship? She owes him nothing.

This isn’t strictly true. Behavioural changes are common with Huntingdon’s, often apathy and loss of interest but sometimes aggression and unusual behaviour. Sometimes sadly that means relationships cannot continue. Very sad for everyone involved.

Your poor friend. I can empathise I know this fear all too well. She is lucky to have you, keep looking out for her, she’s in survival mode and cannot see anything else, that’s what happened as it’s all consuming and the rest of the world falls away. If you can keep reminding her of the world out there, she will come around, please be so patient with her, it’s like another universe, no one truly understands unless you have direct experience. Beyond complex and layered. Don’t let her go, she will eventually be reminded of her needs. She’s so lucky to have you xx

Being scared of the situation is fine - there's help and support for that, as PP have said, that you can guide her towards.

Being scared of him is a different matter. She wants out - He may not be intentionally manipulating her into staying, but if she feels trapped into doing so because of his condition, ultimately she's in the same boat.

Help for him, space for her.

If she's genuinely committed to staying in his life and helping him, she can do so from a comfortable distance.

Unfortunately, it has.

I wouldn't wish this diagnosis on my worst enemy. It such a cruel thing to have.

Their only option now is to find a home where he can stay and be nursed for for the time he has left.

She has to seek legal advice. She can't go on hosting him. Very soon he will need 24/7 care meaning specialized nursing.

It is a disease that can progress extremely quickly, but can completely wear out the relatives. Especially in the last part of life, when the patient is really helpless. I have seen a few Huntington's disease cases through my work. It is terrible.

She needs to have a plan for where he can move and be helped. She can't in any way expect to be able to have him at home or be able to care for him herself. Considering the rapid progression of the disease, I would recommend that it be made immediately.

Yes it absolutely can be. Early Huntingtons is characterized by uncharacteristic disinhibition.

There are many people with HD in jail because they have done something violent totally out of the blue. Sexual disinhibition is also common.

The first thing to go in HD is the part of your brain that stops you acting on your first/worst impulses.

This will be a tough road for your friend.

What a difficult situation. One of my oldest friends has Huntingtons abd watching her deteriorate is the most awful thing I've ever seen.
I don't gave any advice, I'm afraid. Your friend makes her own decisions. I suppose the only thing to bear in mind is that he will ehdbup in a care home soon. My friend is 50 and I don't think she'll manage at home for much longer.

My friend had a similar experience and it was definitely the illness. He's in residential care now. His behaviour was terrifying. Never, ever anything but sweet and kind before. She's a nurse in the field coincidentally, and knew this to be the case.

Sorry but that is a ridiculous thing to say, of course behaviour is affected by Huntington's disease.