Carers -Lets support each other

Savvy_Sue

cw18, I don't think it's wrong of you to say that.

I have no real idea what you're going through, but I know it wasn't much fun for my DH when I was seriously depressed yet trying to protect him from it.

Did you notice what I said here? Even before you start claiming Carer's Allowance, it sounds to me like you'd be entitled to a Carer's Assessment. And, harsh as this may sound, it doesn't matter whether your DH wants you to have one or not, or whether he thinks they can help or not. This is about YOUR needs not his. Hopefully that will hook you up to a local carer's group which will allow you to let off steam IRL, over a proper cup of coffee rather than a virtual one.

And hopefully, maybe, if DH realises that you need support regardless of whether he does, he may be willing to talk about that.

Well, we can hope ...

cw18

I may look into trying to find a local support group -- but there's no way DH would play ball if I tried to get any sort of help in the house (or a 'weekend away' for him so I could catch up in the house myself).

He always pushes himself more when people come round to "prove" he's not an invalid -- and once they've gone he collapses with exhaustion. Even if someone saw through him and respite one was or another was arranged, then I know (and even his brother has said it) that he'd play merry **** with everyone -- including me -- 'cos he doesn't need it, and he doesn't want it, and he's the one that's got the illness. His brother has tried to talk to him about us having some "breathing space", but he changes the subject or sends his brother packing 'cos he's "tired".

I have been considering trying to get a referral to MacMillan behind his back, as I know it can take "a while" to get hooked up properly -- and maybe by the time that happens he'll have come around to the idea. But there again, he could get into a strop and still refuse to "play ball".


In fact, the more I type, the more it sounds like I'm caring for a toddler with tantrums :roftl:

Savvy_Sue

Men, huh!

Mind you, that's a bit unfair on men, as any Archers fans will know: Peggy Woolley being adamant she'll be home from hospital soon, after she's had a stroke from all the stress of looking after Jack with his Alzheimer's!

Two suggestions, if your DH won't accept help, remember to look after yourself extra well. And the other, would it help to write him a letter explaining how YOU feel? Yes, it's him who has the illness, but you still have to live with him! And however much you love him, it's still hard ...

savingforarainyday

As I may have mentioned I home ed my 14 year old ASD/dyslexic son. Been doing it 3 years now. Now a lot of the stuff we do is interest led, which is really good, but.......... You knew there would be one of those didn't you.

Distractability my worst enemy. He is self distracting, it is a talent he perfected in Primary school when, he doesn't want to/doesn't think he is able to perform a task. It can take ages to complete work/a lesson. He prevaricates and procrastinates, he can make a 10 minute task last at least 30 mins. So motivation and planning are my key words.

Well today I have ran out of both. Don't get me wrong the constant talking is an improvement, on throwing pencils, snapping pencils, chewing rubbers up and spitting them across the room that we had 3 years ago, but I would love one day when he would just get on with it.

Well that's my little vent. It seems a bit whiny compared what some folks have to deal with, but I do this every day and..........

I don't know about others, but finding someone to just tell it to actually isn't that easy. But I don't know why? Whether is because I just think they can't even contemplate the situation or what I don't know. Does anyone else ever feel like this.

Well he is out with his mate now. So I have the joys of housework to pursue.:A(all of you)

sams247

I think this thread is wonderful, and a sad indication of how much support is needed and not provided. It would be nice to think that for every family in need there was enough money and local support.......

I come to this from another side, I was a respite carer for many years both for adults and children. I loved what I did and even though some days I was worn to a frazzle I knew that by the end of that day I could hand the child/adult back, so I always had much admiration for the families who cared every day – literally 24/7. Then for some odd reason my SS case worker changed and I was without a child/adult to care for for a year. It was very frustrating, and eventually I gave up and came off the register. I had lots of 'leads', met the families and even got to panel with some, but it never seemed to progress. I have no idea why. That was about two years ago now, and reading this forum has stirred up feelings that maybe I should get back out there and do some support again.

With regard to people staring - we occasionally took one of the young adults we cared for on a family holiday (she had cerebral palsy and profound learning difficulties and physical handicap), and generally speaking people just ignored or accepted us. One time we stayed in an hotel and the people at the next table asked for us to be moved as we were putting them off their meal! My daughter was about 6 then and I explained very loudly to her why we were being moved, I was so mad.

Can I also mention Samaritans............ they are not only for the suicidal, but for people really needing a break and someone to let steam off to when they feel they can't cope.

Take care all

tilly's_mum

savingforarainyday wrote: »

I don't know about others, but finding someone to just tell it to actually isn't that easy. But I don't know why? Whether is because I just think they can't even contemplate the situation or what I don't know. Does anyone else ever feel like this.

I do - I have tried to talk to friends and family and I usually given a pitying look and they say one of two things "I don't know how you cope" and "you should see your doctor" I cope because I have to and if my doctor could wave a magic wand and make my daughter not autistic don't they think I would have gone years ago!! so now I don't bother telling them!

Mrs_Ryan

cw18 - I know how you feel, my OH goes on the same way!!

It can be very hard work trying to look after him because he is an adult - (a 37-year-old man) and quite often he wont tell me if something is wrong - an extreme example of which was early this year when he tried to take an overdose and the first I knew of it was a remark which was 'hide my tablets, I've done something stupid!' The first time we talked about this with his consultant and CPN, I burst into tears. Until then, they had no idea I was struggling to look after him, and neither did I, tbh. I think thats another case of trying to protect me but he said it was the thought of me that stopped him, but given my training, and the fact I have always told him that he can tell me anything and it wouldnt shock me, I felt a bit let down that he felt he couldnt tell me.
I also know exactly what you mean about feeling I dont have the right to call myself a carer - my OH works full time, drives a car, and outwardly to everyone who doesnt know him appears perfectly normal. But behind the scenes.... he often cannot get himself up in the morning, he cant even do something as simple as choose his own clothes.. I handle his banking, etc for him (we have separate accounts with the same bank) I handle about 95% of his official things - driving licence,(its restricted cos of his illness) car tax, car insurance, DLA renewals etc, I speak on the phone for him as he struggles to communicate with people he doesnt know, and about a million and one other things. I have to attend all his appointments with him (which can be a massive pain in the bum but luckily given the nature of my job they are really understanding as the bosses are all RMN's which is helpful) It can be a massive strain on me sometimes and we often argue when I am stressed and tired, which is the last thing I want to do...
i see some of the patients at work with their carers (generally husband/wife/partner) and I feel really humbled, but I think we all do an equally important job and we should all feel incredibly proud of ourselves.

sharon59

The prince Trust for carers are very supportive and are very widespread in uk.You may find support there and you dont need to let your OH know what you are doing-they hold drop in coffee mornings by day so you could be shopping if your oh asks.Carers need to look after themselves or will be burnt out and no use to anyone.
hopefully joining us here will allow us all to vent and gain support as well as using more formal support networks.
hugs to all

cw18

I think I'm definitely going to explore some of the schemes mentioned on here -- though whether I can get to 'meetings' depends very much on where and when they are.

From 3rd November I will have my younger GD around pre-school hours for 3 days a week while DD is at work (I offered, and DD thought about it for a couple of days before accepting). Getting her into the pre-school means she has slightly more chance of getting into Reception class next September (even though she already has an elder sister there), and I felt she would be at a disadvantage if she got a place without having attended as I believe all this years intake had been at the pre-school -- so already knew the building, the staff and each other.

I do feel very humbled by those of you with children though -- and really admire savingforarainyday (think I got that right) for opting for the home ed route, which surely means caring for a demanding (not sure I like the word, but can't come up with an option I do!) child is a 24/7 job, with very little (if any) "time off".

savingforarainyday

Reading this thread makes me realise that the regard we all have for each others reason for being needed as a carer means; we have great respect each others situation.

Whether it is children, adults with a disability or long term/chronic illness we care for them because they are "our" loved ones, not someone else's, but it doesn't stop us admiring another persons dignity and attitude to life.

I am off to find pyjamas and hot bottle and my book.