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I'm a career to partner with mnd - Carers UK Forum

I'm a career to partner with mnd

Tell us a bit about yourself here.
Hi my name is Lisa I'm 36 and my partner 55 was diagnosed with mnd June this yr.
He only come out of prison 2015. He did just under 4 yrs in prison. June this year he was diagnosed with motor neurones disease. And had has all symptoms and has the fast progressive als. I have given all my work to look after him full time.I have to children from previous 16 and 18. I am physically and mentally drained. I'm ok then all I do is cry on my own. I feel so sorry for my children. His grown adult children come once every 2to 3 weeks for a hour they have never excepted me. So do nothing for there dad. Found out couple of weeks ago my partners family have arranged with my partner about his funeral it's from his mothers house not ours because it costs to much. I have been with him 15 yrs. need your advice. Another voice about my situation.
Welcome to the forum. The most important question is do YOU still love and want to care for this man? You cannot be forced to care, That is the starting point. If you do, then lots of help is available to you, from Social Services, and through NHS Continuing Healthcare as his condition progresses. He can be nursed at home to the end, or go into a hospice or nursing home.
I'm especially concerned that he made all the arrangements for his funeral without talking to you first - that would be a huge kick in the teeth for me. Why did he do this.
It's desperately important that he signs a Power of Attorney now, whilst he still has the ability to do this. Has he had any support yet? Counselling? Is anyone supporting you, and your children? Has he claimed any disability benefits?
Sorry for all the questions, don't answer anything you don't want to, they are just prompts about some of the things to consider. If you need any help about anything, just ask us here. Forum members will give you lots of support from fellow carers. Whatever the illness, carers have a lot in common.
Carers UK has a brilliant helpline to give support and more professional advice about benefits etc.
Hello lisa.
Welcome to the forum..it sounds like a very difficult situation for you to be in.. I'm sorry to admit i have no clear advice on your problem. I'm sure others will be able to advise you better.
OH Lisa, that is very sad and very hard for you both. And the rest of the families. And it's the fast progressive type...is this what the consultant has said? Totally understand why you are feeling so low and crying. WOndering how long you have been together, none of my business of course! Sorry, I now see answer is 15 years thanks to Elaine post below, :blush:

Have you considered talking to your GP to get some helpsupport for yourself? Might be a good idea. Sounds like you have dealt with a lot already ....pretty tough circumstances.
To be honest, got tears in my eyes now ....which ain't any use to anybody :roll: sorry Lisa. Xx
Hi Lisa
Welcome to the forum and I am sorry to hear about your partner's MND. That's hard for him and you. I wonder if your partner is someone who 1) Doesn't 'think ahead' and realise the possible consequences of any action he takes/decision he makes. 2) Is easily influenced by people who persuade him in to actions he mightn't take if he was a stronger character or 3) Not a very good person in the first place. Only you know the answers.
As a partner, not a wife, you do not have the same legal rights, BUT you need to seek advice as to what your rights actually are and how any shortfall may be corrected. (I have no idea of the ins and outs of your position -sorry).
You are still a very young woman, with a lot of life and possible happiness ahead of you. I think it is hardly fair that his family don't accept you after 15 years. That's a long time. Apparently when you got together they felt great resentment for whatever reason. Too soon after their mother? Too great an age difference? The fact that you had two small children at the time? However they should be grown up enough to look beyond their own feelings and be happy for their dad in his relationship with you.
I'm wondering if this funeral thing is a way of reclaiming their dad for themselves and cutting you out. That's nasty.
Why has he agreed to it? Is he convinced that it would be better and cheaper for you? Obviously it's upsetting you but have you explained that to him?
I'm sure there are steps to take which will protect you as his long term partner. Someone has mentioned Power of Attorney, and there is also the Will. Has he written a will and are you provided for? If the answer is no he hasn't and won't then it's about time you took a long hard look at your situation and your future.
Worst possible outcome could be that you spend the next years nursing him, working all hours (because it IS hard work), exhausting yourself while his first family just lets you do it, and then find that you have absolutely nothing, possibly no home, no job, no place even at his funeral. Your children might have left and have homes and families of their own to look after and you could be alone with nothing. Please don't let that happen to you. Talk to your partner and if the relationship is solid you should be able, together, to make a plan for you in the future and put legal documents in place to make sure it happens.
If that works out then there is help out there regarding his care, and you start by contacting Social Services. If the other extreme is true and to him you are just his skivvy/nurse, disregarded by his family, then you do need to look out for yourself.
You have 2 different things to get sorted. His on-going care as his condition worsens and also your future.
Think about it and come back and ask about anything you like. More advice available from the lovely people on here if you ask for/need it.
Kind regards