I can't do this any more

[DazedConfusedDone]

I'm at the end of my tether. My once DP is chronically ill and now unable to do anything for himself. His life is awful and so is mine. He has just given up, become completely self absorbed and demanding. I work in a busy, FT job and am required in the office several times a week. There's a fair commute involved we have an Infant school aged child.

Our downstairs is now more like a hospital than a home. It is,always noisy. 'D'P has withdrawn from family life and mostly ignores us, except when he wants something and spends his time watching his laptop with the sounds blaring out (despite having headphones). He is oblivious to what's going on around him (through choice rather than illness) and often ends up upsetting one of us through being inconsiderate because he's inside his own bubble. He does not understand the pressure I am under to work, run a house, be a lone parent and carer. He makes requests/demands that I think are unreasonable without any thought to how they affect me. We have has so many arguments alt this recently, but he just keeps doing it. It's like he has completely lost any empathy.

My main problem is that I'm so sleep deprived. I can't go to bed until he does. He wakes me up at least once a night and DC has recently had a spate of waking too and crying (bad dreams or scared of being alone in the night) - I would get just around 5 hours 45 mins, but I am woken 2 or 3 times during the night.

It's making me into a horrible person. I am irritable, sad, resentful and so, so angry. My concentration is off at work, I feel physically week and shaky at times and I utterly hate myself.Tonight I have had a horrendous meltdown when I was woken up. Completely unacceptable. I felt like harming.

We can't go on like this and I'm so scared and so sad. I've asked so many times for some consideration but it falls on deaf ears. Our lives are so restricted and my DC and I sacrifice so much to try and keep us together. I live in the vain hope we can be OK again, but I don't think there's any coming back from this.

OP, nobody could bear what you're going through, and I'm so sorry. I know you're worried about guilt and responsibility, but the best possible thing you could do for the three of you is to find a care home for your DP. At worst he might be marginally unhappier; at best he'd have professional carers always available, not an exhausted sleepless overworked desperate partner.

Most importantly though is for you, as the only future parent of your DC, to preserve your health and their happiness. Living as you are now will be causing extreme stress and making you more liable to illness yourself. You owe it to you and to them to minimise the strain of this sad experience. You don't need to suffer unnecessarily. You aren't making your DP happy - you can't, much as you'd like to, and much as you've tried to - so do all that you can to improve the quality of your surviving lives. That's what your DC needs.

What a difficult situation to be in. I definitely suggest some counselling and support groups to unpick the feelings of guilt. There is no guilt in using the professional services of a care home.

@DazedConfusedDone I’m sorry you’re dealing with all of this. Depending on the placement of the tumour, this may be affecting his ability to connect and empathise - and even remember that you have spoken about your needs. I wouldn’t discount a care home, tbh. He might be happier there with his needs being better met.

I'm sure you know this but headway are and excellent organisation for support as is the brain charity. Don't be fooled it's Liverpool based they will support families across the Uk. Ask for a reassessment from social services. Will his needs trigger an assessment fromCHC. Very hard to get health funding but do start the process. It gives you evidence going forward. An organisation called the Victoria convalescent fund are great at funding for respite. Young carers for your dc. So they to have impartial support

Seek out support for yourself. Counselling isn't going to change anything but it gives you a safe place to work your thoughts out. And empower you know you are doing all you can

Residential care feels like you are giving up. As already said up the thread it's an opportunity to have your relationship back with your husband. Someone else is doing the care side of things. They will get a better routine and more active day for him and your time can be about quality. These decisions do not need to be made today. But do seek out support you aren't alone in this.

Thank you all so much for your empathy, advice and suggestions, I have a lot to consider.

This is awful OP. Find a care home. When he inevitably tries to make you feel bad point out how miserable he has been and how you can't look after yourself or your child properly as things stand. Ask him what he suggests! He's clearly suffering but it's still a choice to be such an arsehole to you. You've become his punching bag and that can't be allowed to continue. Good luck OP.

Im not in UK, but in Oz, Do you have a government scheme where you can apply for more in home care if you're both not ready for residential care?
We have the NDIS , national disability incentive scheme where you are assessed and allotted funding depending on the level of care required.
Is that an option, having more carers come in 24/7 so you can be more in a relationship than be his Carer?
I'm actually a support worker who has two clients both with life limiting illness but still live with their spouses.

Im not in UK, but in Oz, Do you have a government scheme where you can apply for more in home care if you're both not ready for residential care?

We could get another carer in the evening, but that would be around 7pm and really disruptive to our evening. We're generally eating dinner at that time, so there isn't much to do. We wouldn't get nighttime cover I don't think, but I don't know for sure.

Still, that's ask worth exploring when I speak to SS.

If he needs feeding though it could free you up to have your own dinner. It takes a while to find the right balance but if you could ask for more assistance and if you find the right person, you're life could be easier.

Dear DazedConfusedDone firstly huge empathy and hugs for sleep deprivation. I am a sleep deprived carer and have lived through times where it was just impossible and I felt utterly desperate. My situation has eased thank goodness.

Due to very serious illness your child's father needs complex care 24 hours a day and there is no care available at night.

You and your child are asleep in the house, you are not on a waking night duty, available at the touch of a button.

It is reasonable to look for suitable residential care as a matter of urgency, even perhaps to request short term (a few days) leave from work to make the arrangements.

If you or your child needed hospital care even for a couple of days I imagine an immediate move would be unavoidable. If not and there is a live in carer (eg via agency like Consultus Care) who could take over for a week or two in your home perhaps you should arrange that now and spend 2 weeks with your child staying with a friend or family member close enough to continue work and school without major problems. I know how appallingly expensive this could be. It's reasonable to treat this as an emergency.

My child is also primary school age and has complex care needs due to neurodiversity and some physical problems. His father's care needs escalated suddenly two years ago and I couldn't do both. It almost broke me.

Sleep deprivation affects my mental and physical health, in the middle of the night woken yet again I can feel utterly desperate. I can't think clearly due to tiredness half the time.

Residential care can be a positive experience when someone's needs can't be met at home.

Good luck and don't forget the Macmillan helpline and SHOUT for text support. The Samaritans have often been kind friends to me.

So sorry you and your child are going through this. Would it help to think about respite then residential care for him as a safety issue for him, to have his needs met.

You cannot properly provide 24hrs care and work and care for your child. Something has to give. The some sensible way forward would be residential care.

It's hard but it is the rational way forward. Hand hold for you.

@DazedConfusedDone it came as no surprise to me to hear that your DP has a brain tumour. I've been through similar and my heart goes out to you.

I don't know technically what stage of illness your DP is at, most of our most useful support kicked in once DH was classed as terminal and I know that different areas work in different ways. We had a specialist neuro-oncology nurse who was great and I should probably have made more use of. And once he was terminal we had regular support from the district nursing team, Mac carers, occupational therapy, physiotherapy and the palliative care team. Ours were amazing.

DH died on Monday but was cared for, amazingly, by the hospice for the last 8 weeks. I couldn't care for his needs at home (he developed terrible confusion and memory problems). I'm so grateful for that time because, as a PP mentioned, it helped me concentrate on being his wife. We sat together, watched TV together, ate together, with the children as well. People who haven't seen me since before he went into the hospice are already, despite the fact he died this week, saying how much more rested I look. And they're right.

I wasn't sure about therapy, but I got access to talking therapy. Just bring to offload a million thoughts to someone neutral every week was sooo good. It must have been her easiest money all week because I barely drew breath.

I wish you very big hugs, DM me if you'd like. I hope you get the support you need.

Thank you all for your kindness and clarity. It's truly been so helpful and I do feel slightly less guilty, but more importantly brave about facing the facts here. My no 1 priority has always been my child and I desperately wanted to keep our family unit together, but as time has gone on, things have deteriorated and I really don't think this situation is in anyone's best interests any more.

@BeanWriting I'm so sorry, your experience sounds do difficult but thank you very much for sharing this.

All my sympathies op, you don’t sign up for this when you get together do you? Lots of people giving you great advice, but don’t put off friends having the kids for a few hours. It gives them respite too. I hope you find a solution that helps you all.

@PlantPhoenix I'm so sorry for your loss and thank you so much for sharing your experience.

We're in a tricky place, tumour not yet advanced but it's wreaking havoc in DP's body. When he was first diagnosed, his consultant's advice on his life expectancy was based on the interference of the tumour causing other problems, rather then the tumour itself.

I'm beginning to see the prospect of a care home in a different light. It's all just so horribly sad.

@DazedConfusedDone we had similar advice about the tumour for a long while too. They're brutal, aren't they? And nobody can ever say for certain what's happening.

Honestly, the hospice was amazing. I don't have experience of a care home. DH got exactly the care he needed, with experienced people, when he needed it.I think he actually got more company too. My undivided attention when I was there and he was awake, same with the kids. And then the doctors, nurses, carers, cleaners, caterers, volunteers. They would all stop in and have a chat and I regularly cried because they were just so lovely with him.

Take care of yourself and your DC ♥️

Things you can do immediately are booking some counselling/therapy and getting night time boundaries in place. Do your work have an employee assistance program or private health care that covers counselling? You say you can't go to bed until he does, but you need to make it clear that it is not ok for him to be up all night then sleep all day while you go to work. Agree on a bedtime and stick to it. Life will be better for all of you with sleep.

I feel so sad for you reading this. You have done everything you can and I agree with others that it's time for a decision to be made. You are not doing this only for yourself: your child needs you to do this and you will have an improved relationship with your husband when you are not in this horrible cycle. It is very sad and difficult but you've reached breaking point and all the sacrifices you are making is not resulting in anyone feeling happy or grateful or better.

You need to take the next step with a full heart of I have done everything I can, I have pushed myself to breaking point to make everything work and now it's time for the next step in this painful process. I'm so sorry.

You need to do this for your child as much as for you.

Oh, @PlantPhoenix my heart goes out to your and your children. It is so brutal.

@StarlingsInTheRoof yes, fortunately I do have private health care and can access counselling almost immediately, which I'm very grateful for.

Re bedtime routine, we've had the conversation not long ago and I've said it all before until I'm blue in the face. He makes the right noises, things improve for a night, then it's back to square one.

Maybe an absolute meltdown will have had an effect, but in the cold light of day, I think it's a processing issue. He simply doesn't seem able to take things on board, but when I'm exhausted and feeling low, it feels like he doesn't give a shit and when so much of your life is sacrificed for someone who you feel does not appreciate or care for you, it's very hard. I know that's really unfair of me.

@sunshinealwayscomesback thank you. I need hear these things. Pathetically, it feels like a sort of absolution.

I think that's realistic though. You've done a kind, noble thing for a long time so to feel.like the recipient doesn't care or appreciate this is hardly motivating.

I saw my mum go through this with my grandma. The eventual care home was a nice place with caring staff.

The good thing about paid for carers is they don't have all that emotional burden - they're doing a job.

@PlantPhoenix I’m so sorry for your loss 💐

OP the bit PlantPhoenix says about getting a chance to just be a wife again really stands out. I’m glad to see the idea of a home is something you can explore. It’s no shock that the decision isn’t coming lightly, of course it isn’t, but it’s something you need to consider (by the sounds of it).

Well done for reaching out here last night. It’s hard for anyone to when they’re in a dark place and even more so with your circumstances. Big first step.

Could I add some info from the other side as in care home side. We have a unit at one of the nursing homes that helps younger people with high nursing needs.
Family come in as much as they want and can take their loved one out for lunch etc if still an option. If not they can join them for things going on in the home BBQ's in the summer and other events.
All of the nursing stress is taken off the families so they can just be together, and often if the person involved is happiest just watching TV or doing their own thing they are content too.
We had a younger lady with a brain tumor for many years and she still had a comfortable life whilst able and her family visited often.
Round the clock night staff to attend to night needs, often very reassuring to the resident.
Families told us they had to ring social services and say "I'm at breaking point this care situation will breakdown" they will allow you to care for your DH until you say no more and get that support in.
Don't be fobbed off by a few more hours of care coming in, you need to say what you want. They could provide a waking night carer so you can rest but, in my opinion residential care sounds a better option for you and your DH.
I do hope you can get some help soon.

@ilovebagpuss thanks, that's really helpful to get an insight from the opposite angle.

Thanks to ask the support here, it feels less daunting and more of a positive experience.

@TurtleneckTuna I've nearly posted here so many times and lost my nerve. I think I felt ashamed and that people would confirm I am as awful as I've been feeling.

No-one could possibly think you were awful. The absolute opposite. It's your exhaustion and state of being run -down that is making you feel this way. When you are out of this horrendous corner you will look back and see you have done all you could.