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Life-limiting illness

My Disability, my DH and me

26 replies

thisishowiam · 01/09/2023 21:03

Trigger warning - severe MH problems

My disability is invisible, unless you try to have a conversation with me.

This post is long, my apologies.

It is a neurological disability which was brought on by a brain injury a few years ago.
It is unlikely that I will recover fully now, I am middle aged.
Day to day my disability affects everything; my speech, my ability to move, I have accidents which result in frequently visiting A&E.

Until my illness I was well organised, capable, funny, proactive and able.

DH has always been someone who is suspicious of the motivations of others, he doesn't want outsiders interfering. DH also has always been grumpy.

When I was well I could cope with DH's grumpiness, I covered it up.

Now we both need help practical, financial, help communicating with each other, all of it. DH won't admit this, though he did (following suggestions from me) get antidepressants and 6 sessions of counselling.

We live in a hamlet, which was great when I could drive. Now it is a nightmare. I'm trapped in a house with an angry man. Most of my life, I'd guess 95% of it, waking or asleep, I spend in our bedroom.

It isn't safe for me to walk downstairs, if I go downstairs, I shuffle.
Often my limbs won't work (the brain signals are not speaking to the correct part of my body). I shuffle on the floor, on my front to the en suite.

When something like this happens you really find out who your friends are and I have recently lost the last of mine. How?

You know how toddlers have no filter? Example: you walk past an elderly man.
Toddler: (loudly) why doesn't that man wipe his nose?
My disability means that sometimes I don't have that filter either, I'm not quite as bad as the toddler in the example above, but I accidentally say stupid shit that is insensitive.
My final friend lost her Mum two years ago. Last month I asked my friend how her Mum was. Understandably, my friend has avoided me since. She has gone back to live in her home country for 8 months (she does this every year). I don't think she will communicate with me again, I don't blame her.

I'm devastated that I said that, I have tried to apologise and tried to explain. She brushed me off. As I say, I don't blame her.

I'm lonely, isolated, frightened and bruised (literally).

I want to go to sleep tonight and not wake up tomorrow. I cannot do this anymore.

I don't know how else to explain it. This is hell.

OP posts:
MillWood85 · 01/09/2023 21:23

I suffered from a relatively minor head injury for several years after knocking myself out cold in the garden, and honestly those years were hell. I completely understand the anger, frustration and just wanting to be "normal" again. It was horribly isolating and lonely to be trapped in my own head.

Are you in touch with Headway? And getting support - I was under a clinical psychologist and head injury team who really helped me with day to day living and physio etc.

It sounds like you need to reach out here, for you and your DH. Is your GP helpful to try with? I'm so sorry you're feeling like this.

cestlavielife · 01/09/2023 21:26

Maybe move to some kind of care facility?
You do not have to stay with an angry man

Grimbelina · 01/09/2023 21:30

I am so sorry to read this and have also lost friends due to (neurological) illness. It was a terrible shock and pretty devastating as they gradually fell away. However, I have a relatively supportive DH and have new relationships (and lots of online ones). Your home situation is completely unacceptable though. Would you consider leaving your DH and moving? Maybe to an extra care scheme where you had some support and somewhere busier where you could actually have even small social interactions with kinder, more understanding people?

Ratfinkstinkypink · 01/09/2023 21:45

I am so sorry life is so hard for you, I don't really know what to say but a PP is right, you don't have to live with an angry man nor should you. Could you talk to your GP or a nurse at the surgery, do you have any outreach workers who come to see you?

Bookchildtable · 01/09/2023 21:47

I can really resonate with your post. I don't have a head injury but became disabled 9 years ago (I can't think straight, lost my job, ability to drive, live in my bedroom for most of the time). I'm a single parent to three teenagers who are what keeps me going. I've also (after 6 year wait) finally having some counselling which helps but the problems are still there).
Practical issues -have you had an occupational therapy assessment, physio therapy assessment, looked at adaptions to the home via the council?
I actually ended up moving house as I couldn't cope, I bought the only house I could afford it's not great but I live downstairs and my dc live upstairs.
Please speak to your gp, get some mh support/ referals if needed this might help you see what needs to change or what can change. I was very resistant to support but got to appoint where I realised there was no other choice if my dc were to still have a mum.
Regarding friends mine all left one by one (and most of my family) when I wasn't the same person I was before. I don't know the solution but understand how hard that is and wish you all the best. I sometimes wonder how many younger disabled people there are stuck behind closed doors.

thisishowiam · 01/09/2023 21:54

Between this thread: I would love to leave DH, but we would have to sell the house (or DH would have to buy me out).

I'm not sure that an assisted living facility would have me?

As I say; this is how it is now.

I'm 30 miles from the hospital with a head injury unit. Even if I could get there (it's not that public transport is difficult here, there is no public transport). They won't take me because I don't have a current head injury.

Which is why it is a disability now, this is long term.

Like an idiot I recovered from the head injury, up to a point and I tried to go back to work.
That didn't go so well.
I would do a day of work, on day 2 I would be so exhausted that I would have an accident or incident and be out of action for a month. This went on for a year.
Truthfully I felt pressure from DH to work.
I really, really tried.

I've only started to accept that I am disabled very recently, I have only just applied for PiP. I have no income of my own.

For now I'm stuck where I am.

OP posts:
thisishowiam · 01/09/2023 22:04

@Bookchildtable I don't have any support yet, though I'm hoping that help is on the way.

When I spoke to the woman at the council about my situation she was genuinely horrified.
Sometimes it's only when someone outside looks in and says this is wrong that you realise how bad things are.

I'd like to have a hobby but again, there's no money even for a jigsaw (the puzzle, not the tool) and I can't leave the house. Besides, I rely on DH to help me in and out of the bath or shower, which I need before I can leave the house.

OP posts:
Pixiedust1234 · 01/09/2023 22:10

Between this thread: I would love to leave DH, but we would have to sell the house (or DH would have to buy me out).
I am so sorry, your life seems hellish. If you got 50% minimum of the equity in the house could you afford to buy anything? Do either of you have pensions or savings?

I'm in a sort of similar situation in that I have chronic conditions so I can't work. I spoke to my GP that I wanted to leave and they referred me to a social prescriber. See if your GP practice has one of these. They help with isolation, housing, fitness, liaise with councils, cab etc. Mine came with me to a solicitor's appointment due to me having brain fog and anxiety in new places.

As for PIP get the councils benefits advisor to fill it in for you. Mine came to the house as I couldn't go to them. Ring and ask.

pickledandpuzzled · 01/09/2023 22:15

You need a social worker, and an assessment.
With that level of disability, I'm fairly sure you would be entitled to housing and support though it does depend on your area.

Tell the GP about the situation- don't sugar coat it. Make clear your vulnerability to your husband's anger.

Andylippy1 · 01/09/2023 23:06

I would advise contacting adult social care. Ask them for a needs assessment under the care act. They will allocate your case to a social worker who will undertake an assessment and a support plan. You can discuss what types of support you need at home from a carer (not your husband) and tell the social worker you would like your own place if this is what you would like.

Did you have an Occ Health assessment at work? This may have assisted you with reasonable adjustments. With regards to your PIP claim can you contact your local welfare rights team or a disability charity? There should be local agencies to support you with completing a claim form. Good luck with it all, you can do it and a more supportive and happier life will await you.

scoobydoo1971 · 02/09/2023 01:02

Your post really stuck with me. I have a neurological disorder, family bereavement, living rural, lost friends and partners over this and endless rounds of surgery. Very unwell yet have to keep going like a robot juggling endless hospital appointments, tests, surgeries and running a business I have inherited (and cannot close easily). I have recently had more surgery which has zapped my energy dead and left me with more disability and more pain. My GP says he has never met anyone with 19 medical conditions like me, including many very rare disorders. I don't have anyone but my children to help me. Their Dad and I separated years ago, and does his bit but he doesn't live here. You need to move nearer services, like I do. You need to claim and fight for PIP and Employment support allowance. You also qualify for council tax discount if there is a room at home that you depend on (say a bathroom with a rail). Your local authority care team should be able to organise other forms of help for you. Sadly you need to advocate for yourself as services are overwhelmed, and you have to fight and challenge anything that isn't in your interests.

Grimbelina · 02/09/2023 08:15

So much useful info here. I completely understand about not accepting you are disabled - it has taken me time - I kept thinking I would get better and no need for PIP. I am finally applying for it now and looking at my life in a different way.

You have accepted that PIP is needed... and hopefully will get to a place where you realise there is more help available and that you need to leave your DH. It is hard but not impossible. I wish you luck.

Timeforabiscuit · 02/09/2023 09:48

I'm so sorry, DH has a brain tumour and neurological damage, his world has got smaller, but he's found online communities a real solace.

You write beautifully, and you deserve a full life. Charities like headway can help, especially as the difficulties between people can vary so enormously.

AnnaMagnani · 02/09/2023 10:06

Have you had any support from relevant charities such as Headway?

Your isolation comes over very clearly in your post and that you lack an understanding community of support.

I'm living with a brain injury

I'm living with a brain injury

thisishowiam · 02/09/2023 14:46

My PIP application is underway + early retirement due to ill health, it won't be much but it will be enough.

My share of the equity is probably only £100k. I've wanted to move to a cheaper area for a while.

My proper pension is minuscule around £6k per year at retirement age.

The next part is very outing.

Since we were married has paid in around 60k to his pension, maybe more. His pension is close to the maximum allowance, I'm not sure but I don't think I can claim from before we were married.

He has more than one ISA from previous years and he has £7200 in other savings.

@Pixiedust1234 my GP does have a social prescriber, they are a psychiatric nurse employed by the practice, they are permanently busy. They work with everyone in the practice who needs mental health support.
This person is way too busy to come with me to a solicitor.

@pickledandpuzzled my GP are very aware. I do need a social worker and don't know how to get one? I'm a brave face type. I don't know what support to get or how to go about asking.

The housing situation is exacerbated because I want to move. Moving will be good for me, I need to be part of a community and I need to be further away from my family. Long story.

No-one knows about my husband. Everyone thinks he is a good husband, that's what I tell them.
I've no idea who my GP is, I see a new person every time. I don't often see a GP. I find it difficult to talk to anyone I don't know. DH drives me to my appointments and comes in with me.

@Andylippy1 no occ health assessment. They got rid of me before I was meant to go back to work.

OP posts:
Paperbagsaremine · 02/09/2023 15:02

Particularly since COVID you can just deal with solicitors over the phone and online. Of course that still leaves the issues of privacy from your husband, and any communication/retention issues you might have. But IME if you are paying solicitors for advice they'll send you a copy in writing.

It is very tough OP. No-one wins. But it sounds like nobody's happy right now

Babyroobs · 02/09/2023 15:11

It's good that you have applied for PIP. If you have paid sufficient national insurance contributions in the past 2-3 years then you could also apply for New style ( contributions based ESA ). If you are over 50 then please ask an organisation like Age Uk to do a benefit check or CAB can do one whatever age you are. As pp suggested ask your local authority for a care needs assessment. they may be able to advise on housing options away form your dh, depending on your age maybe adapted accomodation. I recently helped a man who had become quite disabled following a stroke and he moved to an assisted living place where there were call bells if he had a fall and he had made a lot of new friends in the complex. Somewhere like this could be a good option for you.

thisishowiam · 02/09/2023 19:48

No I haven't had support from Headway.

@scoobydoo1971 in the main I agree with you.

The problem is I can't advocate for myself, my speech is slurred and my mind doesn't work properly.

OP posts:
scoobydoo1971 · 02/09/2023 20:44

Me too, and cannot put the words in the right order anymore. Neurological damage from surgery that went wrong, coupled with severe pain and fatigue. Dislocated my jaw so many times it is hanging off thanks to Ehlers Danlos, and neurofibromatosis has affected executive functioning. Keep getting tumours coming back after surgery and have one on the oral palate that doesn't help. Try to link into charities representing people with your medical conditions as they may have local volunteers who can help you, the local authority can do a needs assessment, and I always put everything in writing to all agencies by email. It is easier to battle them by email.

Pixiedust1234 · 02/09/2023 21:31

Speak to your GP again. Mine is more a support worker rather than a dedicated MH worker. My practice fortunately has several and some are more focused on the exercise/diet/smoking side, others on the social/housing side. Even if you only have the one I'm sure your GP could refer you to other support services. Start there.

I wish you well on your journey and I hope you find someone who will support you until you have your own place, with a lovely wet room Flowers

thisishowiam · 02/09/2023 23:28

@Paperbagsaremine I understand your sentiment and I appreciate your support; solicitors cost money and I don't have any.

@scoobydoo1971 I meant to say thank you and that I hope you're ok? I'm unsure whether you can drive or access public transport, I hope you aren't as isolated as me.

@Grimbelina although not everyone is the same, IME it does take time to admit, then adjust and adapt to being disabled. I don't know about you, but 5 years ago and always before then I was incredibly capable, I won't go into it but my life has never been easy and that idea of fighting for everything? It was born from necessity. I hope that you're alright? You are welcome to DM me whenever you want to chat, or you need a moan.

@Babyroobs I would have thought that I
have paid all the NIC I need to over the past three years.

To the person who said my writing is good thank you ♥️ I'm considering this as my next career.

People have asked; I have had no OT, OC or Soc S investigation of intervention, I know that I need some. The problem with both this and my healthcare is that there is no professional pulling all of this information together in one place. I desperately need help, unfortunately I seem so capable I think that professionals focus on the most vulnerable. Services are stretched to limits. Why would I deserve intervention? Hmm

OP posts:
Andylippy1 · 03/09/2023 19:53

I would advise you to ring adult social care and ask for a needs assessment under the care act. Explain your needs have changed and they have increased. They will then allocate you to a social worker. You could ask the social worker for an advocate to be allocated as you do not wish for your husband or family to advocate for you. Don't worry too much re your slurring of words there is various ways to communicate effectively. A mental capacity assessment will probably be undertaken too however you seem to have capacity to decide on what your care needs are and your accommodation wishes.

When you attend the gp ask your husband to stay outside in waiting area. Don't have him going in with you - make up an excuse peri menopause or something women related if need be. Then talk in private to gp you could also mention needing a care act advocate here & they could record this on the system so it is noted. Take the control back, it is your life and your decisions. You can do it, you are strong. I know this from your posts.


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Andylippy1 · 03/09/2023 20:12

I would also advise seeing an employment solicitor re your work situation and dismissal. No occy health referral is a red flag. Sounds like they daunt follow the full process. Could you research free solicitor drop in sessions local to you? I would advise visiting a few if possible and collating the info to decide on your next steps. Could be an unfair dismissal or discrimination situation?

pickledandpuzzled · 04/09/2023 08:53

You say GP is aware, is he aware of your lack of privacy and your husband's control?

Are you able to write a note to hand to the GP,, calling it a list of symptoms you'd like advice on, and include the request to be seen without DH?

I'm just trying to work out how you can safely inform them that you need help, away from him.


PollyThePixie · 04/09/2023 09:07

Dear thisishowiam, I can’t offer any practical advice but I just want to send you best wishes and a heartfelt hope for better days going forward.

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