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caring for ex-husband with secondary progressive MS, need ad - Carers UK Forum

caring for ex-husband with secondary progressive MS, need ad

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Hello,
I am new here.
I have become the carer of my ex when he was diagnosed with MS in 2013. Now that his conditions is getting worse, he is staying with us. for the last 5 days, his mobility is greatly affected. Not sure if he will manage to go back to his house, especially that it is not an adapted house. Neither mine but mine has very easy access to wheelchair.
I'm on carer's allowance and income support.I receive child tax credits. I have a secured tenancy. Any advise please.
N
Hello and welcome,
You need a needs assessment from social services for your ex and a carer's assessment for yourself. A social worker will visit you and you will tell them all your ex's needs, the problems he is having etc , all that you have to do for him and what you are struggling with. Hold nothing back and do not volunteer for anything, even if you actually feel, 'well I could do that'.
A care plan will be drawn up and the SW will suggest a means test. Remember they want to know about your ex's finances -NOT yours. Whether he can return to his own home might be problematic, they will probably want to visit it, but you must decide beforehand whether you want him to return home, stay with you, or go into residential care. Think very carefully about the options and choose the one which is best for YOU, then be very clear to SS that it's what you want.
Whichever you chose you must have help. It's only going to get worse, harder, more exhausting and your ex will probably have to go into a Care Home, which specialises in dementia, eventually anyway.
How old is your ex. Is he receiving all the benefits he is entitled to? Is he old enough for Attendance Allowance for example?
Elaine
In addition, you maybe should check with the solicitor who handled your divorce (assuming he was a good solicitor) about what might be the best way to protect yourself financially now. This may sound 'venal' but you shouldn't really care for your ex 'for free' - he is your EX, remember! (And your attitude may well be determined by the reason for your split - whose 'fault' it was, if applicable, also whether he is your children's dad or not).

This may sound like a dreadful thing to ask, but those of us who have experience of a partner with a terminal or life-limiting condition sadly know the truth of it, as well as the pain it causes to think about it (my husband died of cancer some years ago), but what is your ex's likely life expectancy currently (though this may possibly improve if new treatments comes on stream)? This should also play a key part in your decision. As you will probably already know, caring for someone 'short term' is very, very diferent from 'long term'. What we can give 'for a while' is not what we can keep giving, and giving, and giving.

If your ex's condition is terminal (sorry, I don't know enough about how grim progressive MS can become), and if your children are his, then you may want to get some counselling for them or at least to start thinking to the very dark time when their dad may be no more. The Child Bereavement Trust is very good on that subject, and local hospices may be as well. I hope this isn't something you need to address immediately, but perhaps once you have the current situation in hand, you should put it on your 'to do' list for later this year (if that's a reasonable time scale?). What response you make, and how you handle it, of course depends a great deal on your children's ages.

Wishing you as well as possible in what is clearly a difficult, stressful and doubtless emotional time for you.
Thank you Elain and Jenny for very useful advises.

Yes he is the father of children, they have been reading about progressive MS and are prepared for any thing that can happened but yes, I should think about. The divorce was based on his unacceptable behavior and domestic violence, back in 2009. I couldn't recognize him, he started to be another person, very depressed and violent, but now we know the cause , it was because of MS. When the first big relapse happened in 2012, he has nobody to help him at all. So I started to look after him and once he had his DLA sorted ( which i helped with) , then I applied for CA.
He receives DLA high mobility rate and middle rate care. he had to stop working so he is on ESA.
Jenny: Yes this is a very tough time for me as I was writing my PhD thesis when all this came into my step door :blush:
Regards to you all
N
Ah I forgot to say he is 52
Narriman, don't give up on your thesis. I don't know anything much about MS, but I don't see it's an excuse for aggression. This might seem harsh, but now he needs someone to look after him, and you are a "convenience" for him. I suggest he goes back to his place, and manages as best he can, or Social Services can make alternative arrangements for him. The wellbeing of your children comes first, and then your desire to complete your thesis (no mean feat), and then, and only then, can you consider his needs.
Narriman, I think, sadly, there is a lot in what BB says. That you divorced him for issues of domestic violence does substantially change both the emotional/psychological and, I would argue, the moral factors here.

May I ask why he suddenly arrived with you as he seems to have done (I think you said he's been staying with you for five days when you first posted?) What triggered this? Was it as his request, and over what timescale? Do you feel you had 'no choice but to take him in'??? Did your children want him? (etc etc).

The reason I'm asking these questions (not that you have to answer any here, but it would prudent, I would argue, for you to consider them yourself) is because of the issues that drove you to leave him in the first place.

Domestic abuse and unreasonable behaviour is always a complex difficult and painful issue. We know that 'Controllers' are highly psychologically disturbed individuals, who either from childhood trauma of abandonment or from malign 'power-mad' personalities (or any other reasons that cause the creation of Controllers), but that they never feel 'safe' until they are 'back in Control' of their 'subject' (victim!) which they can control by a variety of means - physical violence, creating emotional dependency, psychologicaly undermining them, etc etc etc. BUT, and this is why I mention it now, one very 'harsh' comment one might make on your ex arriving aback with you is - 'He's got you back'........

Do you think that might possibly play any part in what is 'going on' in your difficult situation right now??

(If it is, another aspect which follows on is this - equally harsh - is there an aspect which says to you, 'Aha - now YOU are in MY power! YOU are dependent on ME! I have the 'whiphand' this time around, because YOU are the helpless invalid and I am the strong healthy person!'.....???????????

Like I say, this is all very, very 'dark' - but domestic abuse is a dark phenomenon in the first place...

For this reason, I would, simply as another person, not as an expert in the slightest!, suggest that maybe you should, whatever you decide to do in practical terms, get some counselling for exploring the 'underside' to this situation, and helping you validate whatever decisions you do make, to ensure they are emotionally and psychologically healthy ones!

All that said, there is, of course, maybe the possibility that yes, MS has been affecting your ex's mind for quite, quite some time (ie, neurologically, outwith his control, rather than just his 'rage' at becoming an invalid.....), and, outwith the MS itself, maybe there's the possibility of neurological conditions such as Asperger's, which contributed to his unreasonable behaviour and so on? Both of these would lead one to a greater tolerance of his unreasaonble behaviour as being not his 'fault' (or so much???)(like I keep saying, domestic abuse is complex in its causes and in its morality/immorality!!!!!!)

Hope this hasn't upset you, but it is something that strikes the reader of your post I would think. Personally, I'm a great believer in getting all these 'dark things' out into the bright light of day, rather than have them lurking as toxic 'nasties' under cover....but that's just me! So obviously do ignore this post completely if you wish, or find it painful or distasteful.
Hi again - wanted to put in a separate post on practical issues!

How close are you to completing your thesis? I think this is a very material concern, as if you are very near finishing it, then it might be sensible NOT to have your ex in your house to be looked after by you in any respect until you have your thesis done and dusted and submitted. (Will you have a Viva, and if so, after what period of time and how much preparation for it - ie, will being a carer upset your chances at that point).

If you try and keep going with your thesis while caring for your ex, you may find it impossible to do simultaneously, or be very much delayed in it. You will need your supervisor's support and tolerance and possibly a delayed submission deadline!

Again, looking at the grimmest outcome for your ex - can you consider postponining your thesis until after he has lost his fight to MS??

I know it sounds dreadful, but so much of your decision now rests on his life-expectancy. A 'brief interruption' to your life while you take him in and 'see him out' is one thing - committing yourself to years and years of nursing and caring for and dedicating your life to him is quite another.

Above all, your children come first - and making a decision about your ex's care that benefits them most is, I would argue, the most important thing (including, yes, taking him in because they want you to - as in, if you don't, they may feel, fairly or unfairly, in later life that you 'abandoned their dad in his hour of need'......)(not sure how old they are so would they know about the domestic abuse aspects???)

Re their knowledge of his physical illness, I would argue it's good they understand what is affecting their dad, though, yes, of course, you have to scale it to their ability to understand and cope. When my husband was diagnosed a friend of mine whose husband had been battling lymphoma for years told me - 'always tell them the truth because otherwise they'll think you are hiding things and worry even more'.....

As ever, wishing you well at such a difficult time in your life, kind regards, Jenny
Did you feel that there was "no other option" but to let him in?
As a parent, we have to make decisions on behalf of our children, who don't see the "bigger picture". They have absolutely no idea of what caring 24/7 means.
Your house is no longer your own, you are no longer free to come and go as you please, have friends in, have parties, it's another mouth to feed and shop for - and that's all without physical care, support, and in future, bathing, toileting, etc. etc.
Decide here and now that he has to go, NOW. Make arrangements for his heating to go on, food in the house, but then it's HIS life, to deal with HIS problems. Arrange for SSD to see him there - did you know that all Social Services have a Rapid Response Team who can give immediate help in a crisis?
They are the people who should be dealing with all this, not you!!
A friend of mine went through something not dissimilar a few years ago.
Her husband had left her and the four children to 'find himself'. They divorced. He wandered the world doing his own thing and left her to it. She did a great job in raising the children to adulthood. He kept in touch with them.
Then he found he had cancer and came back to the UK. He asked to live with her - for her to be his carer as things went towards the inevitable. After much soul-searching they moved in together. It gave them the time to talk about what had happened in their relationship and make amends.
They remarried. Things went downhill fast and less than two months later he was gone.

Narriman - It really does depend on your relationship with him as to whether you continue as you are and only you will know that.