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To want it all to be over, but not in a depressed sort of way.

(23 Posts)
MeByAnotherName Fri 20-Jan-17 15:51:51

I've just had enough and really want to just get it all down on paper. I don't really want to end it all, I just don't want it to continue the way things are.

Let me try and explain, see if any of you can come up with a solution.

Firstly, I'm a single mum to ds (14) who has a severe disability and relies on me for everything. He has all the skills of a newborn baby and all the knowledge and stroppiness of a teenager, he does have limited speech which I have to give 100% of my attention to understand. His incontinence pads leak daily so the washing of clothes and bedsheets is endless. We do get a small allocation of hours for Carers from social services.

Secondly, I suffer with psoriatic arthritis, it is exhausting having an immune system disease, the fatigue and constant pain drives me up the wall. The methotrexate makes me feel drained, sick and weak.

Third, my housing situation will become a problem in a few years as and when ds leaves home. He may well decide he wants to live in a home with similar people of his own age, ( and why wouldn't he?) we currently are in a housing association bungalow all adapted for his needs, if he moves out I suspect I will have to as well, not having worked means no money, and no real way to save, his equipment costs a fortune.

I haven't worked since he was born, physio appointments, reviews, occupational therapy, washing, it all fills my day.

I'm also studying for a psychology degree, I hope to start a new career once he's gone (assuming he does move out), however I'm behind in the study, assignments are looming and they're not getting done as well as they should. I've still got at least 3 years to go, plus post grad training.

My partner is great, he doesn't live here but does stay sometimes. He however, struggles with anxiety and depression and has been hospitalised more than once for a few weeks at a time. I'm always concerned in case he has another crisis, I help him as much as I can but there's not a lot I can do.

My family is small and no help, dm is in in her 70's, dsis is 200 miles away. Ds father does visit and sometimes take him out, although anything more than a couple of hours once a week is a rarity. I feel like I've got no support, and am sinking. I'm not sure where to turn and really just wish I didn't exist or that it would all go away.

I do realise I am lucky to be in the UK though, the support we all get from the NHS and social services is amazing.

And I'm definitely not depressed, it's just a lot for one person to deal with. Well done if you got to the end, any suggestions?

Or maybe I'm just being moany and should get on with it hmm

He's just got back from school, I'll be back later but it might be a while, he needs feeding and entertaining.

And I've probably totally outed myself - apologies to those who know me.

NavyandWhite Fri 20-Jan-17 15:54:07

It is a lot for one person to cope with. Gigantic. I'm sorry things are so difficult for you. Do you get any time for just you?

Feilin Fri 20-Jan-17 15:56:01

I too have psoriatic arthritis . Get yourself back to the hospital and fight for the biologics treatments I'm on cosentyx and etoricoxib . Methotrexate made me ill too. If you do this you may feel a bit better.im sorry I have no real advice for anything else , hopefully someone will come along who can help with the rest.

ImperialBlether Fri 20-Jan-17 16:01:37

I think you are dealing with an incredible amount of stress and no wonder you're struggling.

Does it seem likely that your son would be happy to move into a sheltered unit? If so I think your independent life could really start then, couldn't it? It wouldn't be far off the end of your degree.

Why don't you speak to your social worker about the housing situation? It would be appalling if you became homeless, but I could understand it if they moved you to a one bedroom flat. Would you be OK with that if it was still HA?

Brittanyspears Fri 20-Jan-17 16:02:40

Being a full time carer is exhausting and its taken over your life. You also, it appears have to be the carer of sorts for your DP. I have no advice at all just to say you are clearly doing a great job. Do your social services have support for carers? Ask for a carers assessment. There may be money for counselling (not just for depression) respite, a mini break (for u), or other things to help you personally.

Lake2 Fri 20-Jan-17 16:13:12

Are you entitled to any respite? Some charities provide help too, it's just finding them. It's a very hard situation and you should be proud of yourself for doing so well.

No advice really, except to make sure you are getting all the help you are entitled to

Gooseygoosey12345 Fri 20-Jan-17 16:13:16

It is a lot to deal with.
Just want to say though, you won't be forced to move out of your home if your son moves out. That's not how it works thankfully! And you may find yourself in a good position to get a swap if you wanted to.
In regards to your degree, how organised are you with your free time? I found writing a timetable helped me a lot. I knew when I should be studying and what I should be studying in that time. If you're really struggling you can defer for a year.
That's all I can offer any help with. I hope you are getting adequate support and feel more positive smile

MeByAnotherName Fri 20-Jan-17 18:11:40

Thank you for your replies. Feilin, I am on biologics as well, Cimzia which seems ok-ish. Have swapped the methotrexate to injection rather than tablet, am starting those on Monday so hopefully they might be more effective, and then a review due in the rheumatology clinic mid March.

Imperial, ds says he wants to live with a carer when he's older and I hope he does, for his sake rather than mine. He's a outgoing typical young man, (just trapped in a crap body) madly into girls, cars, Ali G... why would he want to live with a 40 something mum watching his every move!

Goosey, I'm about 4 weeks behind on one module and 6 weeks on another. I made an recovery planner then completely ignored it, ds had just gone back to school and my best intentions of getting my head down and getting on with it disappeared into getting my head down on the pillow and sleeping blush I did manage half of one assignment today and will carry on later once ds is in bed, 1,000 words won't take too long once I understand what it is I'm supposed to be writing.

Thanks all for your replies, it's a relief to know someone will listen to my moans and not judge me.

MeByAnotherName Fri 20-Jan-17 18:11:48

Thank you for your replies. Feilin, I am on biologics as well, Cimzia which seems ok-ish. Have swapped the methotrexate to injection rather than tablet, am starting those on Monday so hopefully they might be more effective, and then a review due in the rheumatology clinic mid March.

Imperial, ds says he wants to live with a carer when he's older and I hope he does, for his sake rather than mine. He's a outgoing typical young man, (just trapped in a crap body) madly into girls, cars, Ali G... why would he want to live with a 40 something mum watching his every move!

Goosey, I'm about 4 weeks behind on one module and 6 weeks on another. I made an recovery planner then completely ignored it, ds had just gone back to school and my best intentions of getting my head down and getting on with it disappeared into getting my head down on the pillow and sleeping blush I did manage half of one assignment today and will carry on later once ds is in bed, 1,000 words won't take too long once I understand what it is I'm supposed to be writing.

Thanks all for your replies, it's a relief to know someone will listen to my moans and not judge me.

Areyoulocal Fri 20-Jan-17 19:17:05

Hi OP, sorry you are having such a difficult time.Do you have a Carer's Centre nearby?Ours offers free advice on a whole range of things as well as respite for Carers.There is also this website which you may know of www.carersuk.org/ flowers

Gooseygoosey12345 Sat 21-Jan-17 10:45:21

I'm behind on mine too, I'm also still in post Christmas slump. I've concentrated on reading the necessary bits for my assignments and catching up later smile good luck

Brown76 Sat 21-Jan-17 11:09:32

Just wanted to add to those saying you seem to be carrying a huge amount on your shoulders and needing to talk and vent about that is not being moany. Friends who care for children with disabilities say they find their respite care, carers group and their outside work/volunteering really helps. Hope you get some improvement with your own health soon too. 💐

chocolateworshipper Sat 21-Jan-17 11:19:42

No advice, but wanted so give you these flowers

SilenceOfThePrams Sat 21-Jan-17 11:44:13

You won't have to move out; it's your name on the tenancy agreement. You might be able to exchange it for somewhere smaller though, if you want to.

DontTouchTheMoustache Sat 21-Jan-17 11:51:39

flowers that sounds so hard OP, you have so much on your plate and definitely deserve to come on here to vent and get it all out. Do you get time to do anything nice for yourself with friends or dp? You sound like you live for your son which is very commendable but you sound absolutely burnt out. I wish I had some helpful advice for you op. Do you have someone to talk to when you feel overwhelmed?

MeByAnotherName Sat 21-Jan-17 23:19:18

Thank you, more positive words there to keep me going smile

I'll try the local carers group, see if they've got anything going on that might help me, or if they can point me in the right direction.

TheProblemOfSusan Sat 21-Jan-17 23:37:05

You sound like a hero to me, OP. But living it must be really tough, especially as I imagine the arthritis must be painful and movement limiting.

Would Respite care, so you could have a break at your sisters or something, be possible?

Re: the uni work - have you contacted your tutors? Let them know what's going on asap so you can find out options for deferral, etc. Yes it'll take longer - but not as long as failing and starting again. Make sure they understand all your issues and ask about extra support for students with additional needs like your health condition.

PlymouthMaid1 Sat 21-Jan-17 23:42:02

You sound amazing x

Twinkleheth Sat 21-Jan-17 23:50:06

Hello flowers do you think it's felt more difficult because of the long school holidays over Christmas and New Year? So there's not been a break at all and no doubt your son was bit bored, typical teenager, and maybe played up? I was the mother of a very severely physically disabled son until he passed away very suddenly 3 years ago due to a completely unrelated heart condition. So I do understand how all of your thoughts and energies go into caring and advocating for your son. He needs to be looking at more independent activities. As in independent of you - at 14 he would be put with friends, so that should be supported. Are there after school activities or weekend evening groups he can attend with carers. I would contact princes trust and get support to find out all about services in your area and know how to get them for your son.

I also do want to say when my son passed away on the Sat, we received a letter on the Wed with a list of areas we could apply to - we had to move out of the home I had fought for for 7 years. So it will depend on your lease agreement. But they will offer you another house.

I think feeling isolated and overwhelmed is awful - so you're right, it does need to end. Good luck xx

candycoatedwaterdrops Sat 21-Jan-17 23:52:00

You have a huge burden to carry, it's no wonder you're finding it overwhelming. Lots of people feel much better when switching to injected methotrexate. How much folic acid are you taking? An increased folic acid dose may dampen your nausea, although hopefully you won't get as many side effects on the injections.m

I do think this is a good point to discuss your son's future and his independence. He's growing up and making the plans may take some time. You've talked about what he wants and what he needs but I wonder if you ever take the time to think about what you want. What do you enjoy? What do you want from your life? What makes you happy? You deserve to have time to yourself and to be independent. I'm in awe of you doing a course, that's incredible. You have a lot of strength and courage. flowers

DJBaggySmalls Sat 21-Jan-17 23:52:46

YANBU. Its heartbreaking that people are left isolated to manage like this. I'm so thankful for the NHS, I'd be bankrupt without it.

Elfieselfie Sun 22-Jan-17 00:55:37

You are not moaning - you are physically and mentally exhausted, I'm a lone parent on methotrexate and am absolutely wiped out most of the time. Difference is I do have hands on family support to help with the children, neither of whom have a disability.

I'm also a Social Worker. Please ring Children's Services and tell them exactly how you feel and request a review of the care package with a view to increased respite. You need regular breaks. They should also signpost you to other agencies.

Speak to uni as I'm sure they will be understanding and able to offer flexibility in relation to deadlines.

MeByAnotherName Sun 22-Jan-17 10:30:05

Twinkle I am so sorry to read about your son flowers I've suggested after school clubs for him, they do boccia, cricket and other activities but he says a very firm no.

Candy thank you, I'm on 10mg folic acid. Starting injections tomorrow and will see where I go from there, I'm hopeful.

It sounds odd but I don't know what makes me happy anymore confused I'm 44 and since ds was born I haven't had much chance to do anything for me, and the nightclubbing and partying I used to enjoy definitely isn't my scene now.

The uni assignments will be under control, I just need to get my head down tomorrow when he's at school. The uni thing isn't such a massive problem, it just adds to the busy workload, long term gain though so will push on. As soneone in my study group therapy this week said 'if Trump can become president of the United States then we can definite do this module,' I do want a future career, I worked up until ds was born, in a good company with career prospects, I miss the fun of work colleagues, the contact and general having a purpose to the day.

So this week I will find my local carers group, see what they've got to suggest. I'll have to track down my social worker, I don't think we've got one anymore, and will research respite. They closed the local one last year.

My local gp surgery do a carers 'overhaul' I'm not sure what that's all about but I'm going there Thursday morning, its 45 minutes long - I suspect they may prescribe gin, and lots of it (except the methotrexate doesn't allow it)

Thank you everyone, enjoy your Sunday

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