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Carers UK Forum • Struggling newbie
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Struggling newbie

Posted: Tue Apr 27, 2021 11:37 pm
by CLARE_16051
Hi, ive been my husbands "official" carer for 6 years after his health declined and left him unable to work. But honestly hes been a man child for the best part of our time together. We have been a couple for just over 21 years and married 18 years. We have one child our 14 yr old son. Both my husband and son are autistic, husband was diagnosed when our son was aged 8 yrs old. I feel broken and exhausted and caring for them both has left me a shadow of a person. As i found out i was pregnant i found my husband was seeing someone else. I was devastated, after a lot of to and fro we decided to try and make a go of it as we had been told that from trying for 5 years we would never conceive naturally so finding myself pregnant was a huge shock to us both, with promises made we moved forward. Roll on to the present day and im broken, several times over the years ive caught him chatting to women online sexually, i feel trapped with a man child who just dont give a hoot about me. Im left caring for him, given up my job, my life, my dreams for him. Caring for him is gut wrenching. Giving him a bath taking care of his medications his wellbeing keeping him safe and he cant even take care of me emotionally. Theres nothing left between us. What was once a relationship has gone and left before our son was born. Ive nursed him back from death soo many times, grieved soo many times sending him in a ambulance not knowing if he will come home again? Hold what life we have together, and now it feels empty and a waste of the life I've given him. Autism effects and impacts every single day with something going off from my husband and son.
I had a carers assessment a few days ago when i reached out for help with my GP. It was a complete waste of time! They spoke to my husband to ask his needs to which he replied he has none! They ended the call! I asked him why did he say that? His reply was thats what your for! I dont need help from them i have you! Im stuck caring for someone i cant look at anymore without wanting to burst into tears, our relationship is broken, and i feel at crisis point but i cant leave i have nowhere to go! He wont go because lets face it he knows which side his bread is buttered and knows i wont see him come to harm. He self harms too. All this ive told adult social care but they arent interested in helping me as alot is based on our broken marriage and they are not there to sort that out. They are happy to leave me to it. My health is shocking, suffering from fibromyalgia, IBS, depression and anxiety just to name a few. My GP has push for us to go to couples counselling which ive reluctantly agreed to. Its not the first time we have been, he spent the last lot gas lighting me, all smiles for the therapist and agree to homework and working on things. He never did a thing and they came to the conclusion if he dont put the work in it is a waste of time. I agree it was pointless and so will this lot be.
Theres just no real help for someone in my position to leave and move on with life but make sure hes safe as he cant look after himself!
Sorry for the rant, but honestly i dont know where to turn to so i do the right thing and keep my childs father safe from himself.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 5:16 am
by helena_2006
Good Morning Claire. We have many similarities in our situations. I am a Carer for my much older 82 year old husband. I have officially been his carer since Jan 2013. He is medically non compliant. I agree there is little help for people in our position - it seems to have to get to a crisis before we can get any help. My husband has 'mental capacity' as I am sure your husband has? I have not even gone down the Carers Assessment route as I know my husband would say he has no care needs. Yet his short term memory is very bad and I know he would not take his medication or be able to deal with his incontinence.

Others will be able to give better advice but since I am now up - husband been coughing a lot and although I sleep upstairs my bedroom is over where he sleeps, I thought I would at least reply. My only advice is try to make some kind of safety net and life for yourself and your son. I chair a Book Club and although husband insisted on coming with me, at least it helped me make new friends and get out. Unfortunately the incontinence now makes meals out even if allowed very stressful as I do not know when it is going to strike him. If you like reading maybe join an online group? Is there a local Carers Group in your area ? Some offer telephone befrienders and this may be a help to you as they are often carers themselves and can offer some support.

Take care of yourself and make some 'me' time if you possibly can. Get out of the house as much as you can even if it is just for a walk.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 9:18 am
by Sally_17031
What a tough situation. I so sorry to hear that. My circumstances are different, I care for elderly parents. But I hugely sympathise as my Mum was left caring for an ungrateful and bullying husband. He is now dead, and she has Alzheimer's disease, which I largely blame on the burden of caring. Please don't let this be you. For your sake and that of your son.

Caring isn't 'just what you do as a doting wife'. You do it because you love someone and that person respects and appreciates the care you give. If that has gone you really don't have to continue and you certainly don't have to continue alone.

I know it is hard, but you need to follow up with social services and write them a detailed list of your husbands care needs. Explain to them that he lied and write down ALL of the things you do on the most intensive day of caring. Then figure out what would help you, would carers coming in a few days a week enable you to get a job? Could you then work towards some financial independence to leave?

Some of your husband's behaviours sound concerning to me. He might not be physically abusive, but some of his behaviours sound like they might be controlling behaviours. (If you leave I'll harm myself etc.) Have you thought about giving Refuge a call for some advice and support - National Domestic Abuse Helpline - 0808 2000 247. Website - https://www.nationaldahelpline.org.uk/ . I know autism complicates things, but still not an excuse.

As for your husband's autism, was any help and support given following his diagnosis? It must have been a shock to you all and he should have help and support for living well with the condition. If not could you push the GP for him to be referred to a specialist? At the very least due to the self harm he should have some support from mental health specialists? But often 'should' doesn't mean you do get help, so if not push the GP.

Also as Helena says def find some outlets for you. Do you have friends and family that you can meet up with? There are some virtual carers meet up that I'm sure you could join. Have you been in touch with your local carers organisation, face to face meet ups might be able to happen soon, which might help meeting others in the same boat.

It must be so hard, and these are just some suggestions to make things better. Things CAN get better. If you want to leave your husband and you no longer want to care for him then there is NO shame in that. And you need to find baby steps to get out. In the long run it will be better for you AND your son. Caring it a two way street and it really shouldn't be that the carer sacrifices their happiness and well-being for the person they care for.

Keep in touch as I am sure there will be lots of other help and advice.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 3:43 pm
by CLARE_16051
Sally_17031 wrote:
Wed Apr 28, 2021 9:18 am
What a tough situation. I so sorry to hear that. My circumstances are different, I care for elderly parents. But I hugely sympathise as my Mum was left caring for an ungrateful and bullying husband. He is now dead, and she has Alzheimer's disease, which I largely blame on the burden of caring. Please don't let this be you. For your sake and that of your son.

Caring isn't 'just what you do as a doting wife'. You do it because you love someone and that person respects and appreciates the care you give. If that has gone you really don't have to continue and you certainly don't have to continue alone.

I know it is hard, but you need to follow up with social services and write them a detailed list of your husbands care needs. Explain to them that he lied and write down ALL of the things you do on the most intensive day of caring. Then figure out what would help you, would carers coming in a few days a week enable you to get a job? Could you then work towards some financial independence to leave?

Some of your husband's behaviours sound concerning to me. He might not be physically abusive, but some of his behaviours sound like they might be controlling behaviours. (If you leave I'll harm myself etc.) Have you thought about giving Refuge a call for some advice and support - National Domestic Abuse Helpline - 0808 2000 247. Website - https://www.nationaldahelpline.org.uk/ . I know autism complicates things, but still not an excuse.

As for your husband's autism, was any help and support given following his diagnosis? It must have been a shock to you all and he should have help and support for living well with the condition. If not could you push the GP for him to be referred to a specialist? At the very least due to the self harm he should have some support from mental health specialists? But often 'should' doesn't mean you do get help, so if not push the GP.

Also as Helena says def find some outlets for you. Do you have friends and family that you can meet up with? There are some virtual carers meet up that I'm sure you could join. Have you been in touch with your local carers organisation, face to face meet ups might be able to happen soon, which might help meeting others in the same boat.

It must be so hard, and these are just some suggestions to make things better. Things CAN get better. If you want to leave your husband and you no longer want to care for him then there is NO shame in that. And you need to find baby steps to get out. In the long run it will be better for you AND your son. Caring it a two way street and it really shouldn't be that the carer sacrifices their happiness and well-being for the person they care for.

Keep in touch as I am sure there will be lots of other help and advice.

Hi thank you.

We have been to the GP soo many times and its so bad, adults diagnosed later in life are considered to be well adjusted and able to cope as they have managed in life this far. We have been through autism East Midlands and they have said even telling them his self harming they have nothing they can offer call the crisis team or harmless charity for support. Ive had him book in for 3 lots of therapy but they have hit a wall as he just answers i dont know to everything. I had to push the GP in the beginning to refer him, as hubby had been to the GP and been fobbed off. I took hubby back and said i wasnt leaving until i speak to them with hubby. I told the GP i need to know! Our social worker wanted the referral too and we needed to understand what was very apparent with hubbys behaviours not normal, his anger, gas lighting, lack of care for me or our son, the social situations we were getting into because hubby would kick off like our sons meltdowns and it was hard to manage for me. My health has been slowly going down hill and i think its a lot to do with the stressful life i live. Im lucky to have a very close friend nextdoor i can go to for a break and another friend who was married to a autistic husband so knows my struggles.

I wish i could break the connection with him, i care for him but im not sure im still in love with him. Hes ripped that part of me so bad i cant bring myself to be close to him. I dont want anything bad to happen, i know he doesnt take his medication properly even me bringing it to him. Hes of sound mind but its like living with a child for a husband. My 14 yr old son is more mature than his own dad! I have started to take time out for me, but i can only do it when my son is home as im frightened to leave him alone. He has breathing issues with a particularly restricted airway that causes choking with swallowing some foods, among a load of other heath issues. My son is my carer too as my fibromyalgia, migraines, IBS, anxiety and depression can effect me so bad some days i cant get up.

I dont understand why theres no help in they system for folks in our position. I cant get respite care for him. I know the services are broke with little funding, and are having to priority the most in need. I feel stranded. I know he would not survive on his own, he don't know how to budget, pay bills, shop keep a house or have the ability to. Ive tried to teach him over the years he just cant follow what to do. We have had 3 social workers and family support workers and even though they were to help us manage being parents to a autistic child, their only answer was leave him. Even with all his medical issues and knowing my caring roles there was no support to how to do this and not leave hubby in a position where hes not safe.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 4:30 pm
by bowlingbun
It's a terrible situation.
In reality YOU are head of the household, and I'm afraid that you are also the only person who will change things.
He seems to regard you as his slave with no respect for your wellbeing, or you at all. Is that fair?
Do you own or rent your home?
I don't think I could stay in a relationship like that, with a husband that doesn't value me, won't help me with the house, the family etc. He is constantly undermining your self esteem.
The online contact with other women would be the last straw for me.
It's not a proper marriage where you give all the time, he takes all the time.
Wouldn't a life without him be better for you and your son?
The he might accept that he does need help, rather than deny he needs any!

Can you manage a short break away, on your own to think things through.
Even if he won't accept counselling, it would be immensely helpful for you, if you could find the right person, as I have done.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 4:35 pm
by Sally_17031
It is so hard, the system is totally broken. I am so sorry to hear about your battles. I often found the battling to get help for my Dad the straw that broke the camels back in the whole situation. It is hard to find the energy to fight when day-to-day is so hard. So often it is the carer reaching crisis point that tips the balance. And it shouldn't be like this.

I know it isn't a case of 'just leave him' you are clearly a good person and don't want to leave him in the lurch - but could you work towards a point where you start getting some help in to support him, so you feel you can leave if that is what you want?

If you can't leave your husband alone then you really should be entitled to some respite care. (But I know that there is often a gap between what you should get and what actually happens). Are you in touch with local carers organisations? My local one offers a free sitting service so that carers can have a regular break. That might be a starting point if social services won't help? If you can face it, please do go back to social services again and put them right, in writing, about your husband's care needs. If you are providing 24/7 care they really should provide a care package to take some of the pressure off you. But as you know you often have to dig your heals in and push for it. Maybe try giving the Carers UK helpline a call as they might be able to offer advice on what to say to your social services department?

I'm glad you have some good friends who understand, it definitely helps.

I am so sorry that a tough situation is made worse for you because appropriate support is not available. Please do post here and let off steam. We all understand.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 5:42 pm
by CLARE_16051
Thank you all for your kindness and support.
I dont want it to be over but i also dont see i have the choice in the matter anymore. The way i feel about myself i have just self referred for therapy, we are having to go down the path for couples therapy, but i have told them where i am in my head i just dont see this working out and honestly dont know if i can invest anymore of me into something with a person who has sucked the life out of me. I have a referral to Age UK who offer support in finding help and support and have another appointment in a week with them, im going to tell them what my husband did with the care assessment and see what i can do about it. It feels like im battling a broken life and battling struggling to care for him with my own health stuff.

Re: Struggling newbie

Posted: Wed Apr 28, 2021 6:00 pm
by bowlingbun
Clare, as you mention Age UK, how old is your husband?
I don't see why you should be forced into therapy for couples.

Ask Social Services to do a Carers Assessment, and ask them to fund your counselling.
That's how I had mine funded, for different reasons.
Do NOT let anyone talk to your husband about your request, that is entirely out of order.
If your husband is at home all the time, make some excuse and have your assessment away from the home, so that you can be open and honest about your feelings without anyone eavesdropping!!
You need to let your feelings go and have a cry if that's how you feel.

Re: Struggling newbie

Posted: Thu Apr 29, 2021 4:59 pm
by Michael Carers UK
Hello Clare - we were sorry to read that you have been having a tough time recently.

In addition to the helpful responses from other members I have also sent you an email with some further suggestions of support for you.

Wishing you well

Michael

Re: Struggling newbie

Posted: Sat May 01, 2021 11:37 pm
by CLARE_16051
Thank you all.
Ive been referred to age uk by my GP as they now help anyone over the age of 18 not just the elderly. My husband and I are 41 years old. Thank you Michael for the email i have looked at it and noted some i could contact.
I think im just in distress with it all banging my head it feels against a wall. The first therapy session is 12th may, i am hoping between that and my next appointment with Age uk i can find some way to go.