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I CAN'T COPE ANYMORE - Carers UK Forum

I CAN'T COPE ANYMORE

Tell us a bit about yourself here.
sorry this is long , I really need some direction
I am 48 years old have an almost 18 year old daughter with Downs syndrome Autism and profound learning problems
I have a 23 year old lad with ASD who moved into semi sheltered accommodation last June so I am still a carer for him

I have a husband who is 68
in 2002 he had a heart by pass x4 and was told he had type 2 diabetes and was sent home from Barts with insulin that he refused to use.
I researched type 2 and diet but he then started to refuse to eat food I cooked and would order take aways etc
he would go to the shop fill up on cakes fiizy pop all the things he shouldnt

we stopped sleeping together in 2002
he blood sugars were out of control he was suffering headaches, thrush erection problems
but refused to go to the DR or the diabetic clinic and also didnt have bloods done

he now has Neuropathy he can no longer walk and is refusing to eat
it came on suddenly in july 2015 in one leg now its in both

obviously many pills have been tried but he gives up on the likes of Lyrica, gabapentin

he had to be taken off tramadol because he was self medicating

he is also making my youngest son get him cannabis and is smoking in the house

he is demanding get me this get me that, he blames me tells me if i hadnt allowed him to eat bad stuff this wouldnt have happened

he even said to me (i smoke) I hope you get lung cancer then i can spit in your face and tell you its your own fault

he cant use the stairs and lays on one sofa to sleep and then lays on the other sofa in the day so we have no where to sit

the most he eats is 500 calories a day
he has me fetching drinks and pills and bags and tv remotes he wont get up and do a thing
he wont do the exercising he has been told to do

he is constantly swearing at our daughter and shouting at her and when she cries he just swears more at her.

I hate him I cant believe I ever loved this man because he isnt the man i married

I cant cope with him and my 2 special needs children and running a home

he refuses to let me filling in an attendance allowance form
he refuses me access to the pension credits so I have to pay all the utility bills and do the shopping out of my daughters tax credits

how do I get him a place in a care home???
I cant cope anymore he continually tells the children he is going to kill himself as well which is majorly upsetting them

Andrea
Andrea, welcome to the forum. You have been coping far too long!
Ring Social Services and ask to speak to their duty officer, or go to the office personally if you can.
Also ring the Carers UK helpline as soon as possible, to find out what benefits you and your children are entitled to - I have a feeling that you may be missing out on some benefits.
Can I ask if you live in a rented property, or is it your own, jointly with your husband?
Your husband is an adult. He has taken choices and he must take the consequences.
My niece also ignored all guidance when she was diagnosed with type 2. She ate and drank whatever she wanted, didn't lose weight and missed doctors appointments. She is now almost blind, is on dialysis and awaiting a kidney transplant. I can't be sorry for her. It's the life she chose.
Similarly with your husband. He has brought this upon himself. He has a responsibility to look after his own body. Even if you put a banquet in front of him, it's his choice whether to eat it or not.
Sorry if this sounds harsh, but you have choices too. You could stay and let things continue as they are, or stay and refuse to let things go on as they are, or leave.
Jx
I am in social housing,
I had 4 hrs sleep last night and I am running on thin air I havent even been able to have a real dinner since Christmas day

My daughter wakes frequently in the night and also wets the bed most nights I have to change the bedding twice and wash her all down

I get up get her washed and dressed and feed her breakfast, then hubby demands I get his breakfast
he is still able to walk short distance from the lounge to the kitchen but he refuses to, he could make himself a drink but again refuses to

in 30 minutes I will be running my son to college, then I go round to my other son to take him food shopping and do his meal plan for the week and his care plan
no doubt he will need washing put on and washing up done and a general tidy

then the bit I dread coming back home
my daughter gets home from her special school at 3.30 she is like a whirlwind coming in and is frequently very moody. Hubby will start shouting at her, she will cry he will shout

I feed her, her tea, get hubbies tea because he wont eat a meal, collect my son
walk the dog then its time to get my daughter ready for bed
normally its around 10pm I finally get a few minutes to myself but by then I have gone past wanting a meal

I know carering is hard work as I have done it for 23 years, but now its just to much and my children come first they didnt ask to be born with disabilities
Andrea,

Welcome to to the forum. As Bowlingbun says you can ring our Adviceline on 0800 808 7777 or email them at adviceline@carersuk.org
Andrea, you simply cannot go on like this. When you go to Social Services, ask them to urgently update your Carers Assessment and your daughter's Needs Assessment. When were these last completed?
I think the fact that you are in Social Housing and have a very vulnerable daughter might make it easier to find a solution, but I don't know enough about that aspect of things to make any real comment. Others will be along later who might have further suggestions, but the CUK helpline should be your first call, then Social Services.
Andrea, I agree with the others, you CANNOT go on like this!

I would say you need to be rehoused. How and with whom may depend on your children. Do you have two sons (I'm getting a little confused!), one who has special needs and is in supported accommodation, but you still are involved with his care, but the other who is at college and has no special needs? And a daughter who is nearly 18 with special needs and challenging/exhausting behaviour. Is that right?

Firstly, what will happen when your daughter is 18 and officially an adult? Does she then swap to Adult Care Services? If so, can she, too, go into supported accommodation that can cope with her and do her good and help her to whatever degree of independence she can manage (with support)(support that comes mostly from SS, so YOU do not have the daily care of her)(and become more as you are for your son in supported accommodation, just 'extra' support).

How old is your non-special needs son at college (if I've got that right!). Is he over 18 or under?

The key thing to my mind is to get you OUT of your husband's place. HE can, basically, go down the toilet all on his own, because that is what he's chosen to do, he's brought all his woes on himself, and deserves no pity whatsoever. In fact, he deserves criminal prosecution for having passed drugs to his son (was his son under 18 at the time? Even WORSE!)

Divorce this man as soon as you can, as he is monstrous. No other word for it. Unless one could possibly argue he is mentally ill, which still doesn't excuse him in the slightest!!!!

So, given that you really, really should dump this waste-of-space selfish, inconsiderate, cruel, vile man (and he IS all of these things now, however different he might have been long long ago), then the question about your children is whether it will HELP you to get rehoused BEFORE they are officially adult, or after. I don't know how SS works in this respect, but I'm sure others here do, plus the helpline (by the way, email them is the general advice, and they get back to you when they can, as the phone can be very slow to answer because of heavy demand.)

You deserve to claw some of your OWN life back, and once you have allocated some of your caring time to your children (but they also get looked after by SS, ie, in sheltered accommodation etc), then you simply walk away from your appalling husband, let him do whatever he wants, it's not your problem, it's his, he made it for himself and it is NOT your fault NOR your responsibility.

Let this coming year of 2016 end better than it started for you, and for your children. As for your husband, it's up to HIM to pull himself through, and until he shoulders responsibility for his own life, he is NOT your concern. Walk away from him. He deserves nothing from you any more. You've done all you can for him, and he still keeps blaming you like the vile little rat he is.

All the best, and now move towards that happier life for yourself and your children. Kind regards, Jenny.
I really want to walk away but have been told by my council I would be intentionally making myself homeless
I spoke to SS today who are referring me for an urgent care assessment.

I cant speak to my own GP until Thursday and I am going to tell her about the eating as well. I know he is using it as a form of control because I have caught him eating biscuits yet when i give him a tiny portion of food he says he cant eat
255 calories today thats all he has eaten

I have 4 children 1 grown up married son who lives miles away
1 son in semi sheltered accommodation
1 son of 19 at college because he has mild learning problems but he is a lovely lad takes care of himself, he is OCD so does all his own cooking and washing because he just cant take anyone else touching his food
1 daughter almost 18 doens syndrome and profound learning problems
then me, slightly insane me

I am going to tell my GP about the number of times this last week he has threatened suicide , I am going to tell her about the eating and ask her to make an urgent call to get him into a mental health unit

I know this sound bad but I am then going to refuse to have him home

I have coped over the last 17 years with alot more vile behaviour from him towards me and my oldest son than I have posted here

my son got married in 2014 and refused to have my husband at his wedding now that speaks volumes
Hi Andrea
My feeling after reading your posts is that for your three youngest children you are a carer, but to your husband you are his victim and are being abused. Well done you for beginning to fight back. You've put up with more than enough and time to put a stop to it.
Please realise that your husband's condition is NOT your fault. His eating/not eating is NOT down to you. If he's refusing to follow medical advice, refusing to eat and drink, wallowing in self pity and his own filth (can he walk to the toilet?) then the man is (mentally?) ill and beyond your unaided help or care now.
Excellent idea to lay all before the GP and insist on some sort of hospitalisation. Tell her/him ALL and use the word abuse when referring to his treatment of you and the children. Abuse isn't always physical but emotional and mental as well. (Or is your husband violent too?) He is also self abusing and committing slow suicide.
I'm sure that if you have made those calls to Carers UK etc then you will have been given some good advice. You need to know whether your husband is mentally ill, or just a nasty, abusive, controlling waste of space. Either way you cannot possibly cope with it all yourself and you have my respect and admiration for dealing with it all for so long. Will your eldest son help you at all? I understand that he won't have anything to do with his Dad personally, but can he make phone calls, contact SS himself expressing concern for you and his sister? Write letters for you? Could he put you and his sister up for a night or two?

Wishing you a speedy end to this torture. Please put yourself and your daughter first and call in the NHS troops. Insist.
Elaine
Your husband's issues are not your fault - you have done enough, even by just sticking around. I think you need to talk to social services.

Please don't forget to take care of yourself.