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New PPMS/Diabetes Type 1 Carer - Carers UK Forum

New PPMS/Diabetes Type 1 Carer

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Hi, I care for my partner. He was diagnosed with MS 6 years ago. In that time he's gone from being an outgoing fun individual who worked hard and had a good social life, to an angry isolated wheelchair bound shadow of his former self. In turn this has affected me. Slowly but surely as he declined I had to do more and more as well as trying to do a full time job. The job then became part time and eventually went to 15 hours a week until even that became too much and I stopped altogether. Now I am 1 of the 'Great Unpaid' as I like to call those of us that care full time for the pittance the government see fit to allow us. I don't have a social life because I have nowhere to go. I struggle to be out of the house for more than an hour or so before I get a phone call asking how much longer I'm going to be. I broke down in October following a heavy cold and chest infection. I asked for more help from Social services and with their usual compassion and speed for carers I'm still waiting. I can honestly say I've not slept fully in at least a year. Its like being a new parent you sleep with 1 ear open for any noise and then you're immediately awake. The more tired I get the more strained our relationship gets. We've had some wonderful screaming matches over the past 12 months, something we've never ever done in the past. We get over it and life goes on. There are a lot of things I'd love to be able to do but I cannot. I love this man with all my heart and no matter how tired, angry, restricted, lonely I am I will never walk away from him.
It sounds grim. One thought - if, say, your caree was a toddler, would you do what so many other parents do, which is 'work to pay the nanny/childcare'?

If so, is that something you would consider now? You might not show a 'profit' from working, as all your wages might go straight to pay for the carers, but it would get you out of the house, away from the 'drudgery' side of caring (it's the grinding relentlessness of it that gets one down!), it would give you some 'me time' (albeit at work!), and it would create a bit of a 'firebreak' from your husband. (Show me a couple who spends every waking and sleeping minute together and I'd be very surprised!).

Now, you may say to this - 'But he doesn't want me to be away from him' (eg, the 'when are you coming home again?' phonecalls) but to that I would say - well, it is not your fault that he is disabled and ill. Survivor guilt - the person who isn't ill/disabled - is very very common, and it can be fuelled and exacerbated by something even 'worse' which is 'Thank God it's not me in that chair'....... (I had both when my husband was diagnosed with terminal cancer some years ago).

But it remains true - it is NOT your fault that you are well and your husband is not, just as it wasn't my fault my husband had cancer. And that means you DO have a right to some life of your own. You do not have to give up everything to him, just because he has so little....

I know it's harsh, and I know it can seem cruel, for the 'fit' person to 'take time out' when the 'unfit' person is so limited in what they can do, is so dependent on you, but there it is -

Look at it the other way round, if it were you who was the afflicted person, would you begrudge ANY time out your husband took? Would you begrudge letting him work to pay for care that gets him out of the house and 'away' from you for a break?

He's angry with his illness - who wouldn't be? But it does sound like he's 'taking it out' on you, by not letting you have time off without immediately wanting you back.

I know I'm not the best person to comment here, but there will be others who are far more in your situation than mine. My husband died, and to this day, when I read what other wives and husbands go through nursing/caring for very, very 'unfit' spouses, I have to admit my life now is 'easier' in that respect. Desolate and lonely, and I'll never have true happiness ever again (blessed though I am, and know myself to be, with a son, plus other family) - but in terms of an 'easy life', yes, that is what I do have.... (apart from my MIL which is what brought me to this board!) (she's in a home, now, so phew!)

Wishing you all the best possible. I end with one thought - my husband is dead. Nothing can bring him back now. But while there is life, there IS hope - one day, perhaps within your husband's lifetime, treatments may change, cures may be found....it remains 'possible', and that means there is always a 'chance' for the future to better than the present.

Kind regards at a pretty grim time of your life - Jennyu.
Jenny, you are right, if a bit relentless.
Fact is, we carers hold all the cards if only we choose to play them right. We can hold the NHS and Social Services to ransom, but to do that we need to reach to a really tough part of ourselves, the part that knows how to say "No, I am not willing to become an unpaid slave in order to protect your budget merely so that your overpaid, overweight, good-for-nothing middle managers can spend yet more Awaydays in fancy hotels at taxpayers expense "
Know your rights: you can care 24/7 and destroy your health and wellbeing, or demand services which are your right by law.
If they tell you there is no money: They lie!
If they tell you that someone else has greater needs: They lie!
If they tell you you will have to wait: They lie!
I know a case of a woman who camped out outside the surgeons front drive for one night demanding that her husband got treatment. Guess, what, he was on the list the next day .. that's how the system works, the louder you scream, the better service you get.
This is time for action.
1. Ring the Director of Social Services and ask for an URGENT assessment. You will probably be put through to the PA or the Complaints Department. Be sure to stress the fact that you CANNOT cope any more, you've already had a breakdown, and simply cannot care any more without help.
2. Go and see your GP. Ask him to get onto Social Services and to get in touch with the Continuing Healthcare department (Google Continuing Healthcare checklist).
Ask GP to arrange for counselling for you, and perhaps him too.
3. Arrange with your local authority for husband to have a Lifeline.
4. When the Lifeline is fitted, then don't answer his calls when you are out. If he needs you, the Lifeline can call you.
5. When he shouts at you, just walk out and tell him you'll only come back into the room if he promises to be civil to you.
6. Work out what help you want, and when, so you can get some "me" time regularly.
7. Streamline the house. Put away every ornament that isn't vital. Do away with flower borders. Get a dishwasher and a washer/dryer or tumble dryer if you haven't already. Make sure that you are only doing things which are absolutely unavoidable. It's amazing how much time can be saved (I was disabled in a car accident.)
We are here for you, come back as often as you like, especially while you are getting things sorted out.

Everyone needs to realise that you simply cannot go on like this. It's coming out loud and clear from your posting. If you end up having a complete breakdown what's going to happen to him? The only option left is probably residential care. Someone, hopefully other than you, needs to point that out to him.
Thankyou for your replies. It's nice to know someone out there has taken time to 'listen' to me. I feel as though I've been banging my head against a brick wall. When I joined a few days ago it was 1 of those days where I couldn't see any light at the end of the tunnel. Just those few words from some of you has made me feel as though I'm not alone and some people do care for the carers.
Have you found "Roll Call" yet? It really doesn't matter if you don't know anyone there, none of us did when we joined. It's like an "over the garden wall" chat about our day, good or bad, serious or really silly. There are members all over the country, so whilst I'm sweltering in the New Forest, it might be snowing in Scotland. At the moment, this is the nearest to a social life I can manage, and I'm sure it is for others too. If there's anything you need to know, someone on Roll Call will know. For example, when my brother was terminally ill in Uruguay, forum members taught me all about how to use Skype for free, it doesn't have to be all about caring.