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Thread: A failed carer

  1. #1
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    A failed carer

    Hi

    I'm new to this and pretty heartbroken.

    My husband was diagnosed with MND 2 yrs ago February 2012, He was 35yrs old and I was 7 months pregnant with our second child, we had a 5yr old too. He wanted to fight so we have looked all over the world looking for a treatment and a cure. We have been together for 10yrs and we got married last year. He is on the best medicine we can find and buy but to no avail, but it gives hope and if I was him I'd want that hope.

    His decline has been heartbreakingly rapid, he didn't want carers and I managed as long as I could on my own, I started asking for help in December 2012, I had a 7month old and he lost complete use of his arms, feeding 2 people was proving difficult. I ended up in hospital in February 2013 and within 24 hours we had carers in the house!!

    I have had to keep working as he had no life insurance and we have bills to pay, I'm self employed so not working pays me nothing.....

    At around the same time as coming out of hospital I found out my husband was doing on line gambling.....this addiction got worse.......by august 2012 he had accumulated debt of about 50,000 on credit cards and loans......he explained to me that it made him feel alive and normal, I did get that and he promised me he would stop gambling, I believed him.

    By this time he was struggling to walk and speak, we had had a house conversion done so he slept downstairs, I didn't think he had the dexterity in his hands to gamble any more and in October 2013 they said he was in respiratory failure. I had carers in 3 times a day morning, dinner time and evening, his brothers did the minimum they could, one day a week each while I worked, and I did the rest with 2 children and working 40 hours a week, (most of which was done late at night and 4am starts) I wanted to look after him and strongly believed that we all needed to be together for as long as we could.

    In the last 3 month his attitude towards me which has never been kind, loving or very appreciative got a lot worse, he was very cross, angry and resentful of me, which was not new but intensified, yet he is lovely and charming with everyone else. He regularly wished the MND on me and frequently prayed to god that I be punished and have a worse death than him.......we struggled on over Xmas, financially I have really felt the strain, I have done my absolute best to shield the children and to look after him as best I can but physically and emotionally I was swamped.

    Thing came to a head a month ago, I discovered that somehow he had still been gambling.... In 3 months he had racked up another 4,000 worth of debt....that's more than I had struggled to earn to give us a nice Xmas......it was the finally straw I rang the social worker for help....it seemed there was going to be no end to it.......I am the sort of person who will sleep on the floor until I have saved the money to buy a bed so getting debt collectors letters and solicitors letters was too much....

    To cut a long story short he agreed to go into the local hospice, in 2 yrs he has gone there twice, to give me a five day respite break, when he got there he was so angry with me for talking to the social worker that he said, I bully him, I hit him, I isolate him and on it went.......this was just horrendous and I couldn't understand why he should tell such lies........I asked that he get support for his gambling while he is in there.........fortunately none of the professionals that know me believed this.......otherwise there would have been serious implications for the children's welfare but it seems the workers in the hospice do. I'm feel so judged and I am completely excluded from everything that goes on with him in there. I arrived with the children to find he had been moved to a different wing!

    Two weeks ago I took him to the hospital to see the MND consultant he saw his attitude towards me and diagnosed FTD, when I read up on it it explained a lot, he also said prognosis is less than 1 yr, however this was not put in his notes, the hospice do not think this is accurate as they have seen no behaviour to indicate FTD....no they haven't seen his behaviour towards me! And again I feel judged by them.

    He has told me today that he is going to live his brother, despite his brother doing little to help in the past 2 yrs, to listen to my husband talk I do nothing and his brothers do everything. I'm broken hearted that he wants to walk away from his children, that he doesn't want to stay together as a family, that he thinks it's ok to gamble, he thinks it's his money he can do what he wants.......I had hoped that the FTD could explain this behaviour but I've had no confirmation and I don't think the hospice will accept it either.

    If you had seen us both one month ago sat side by side you would have thought that I was the ill one, he looks well, I've taken this time to get myself well and rested to carry on doing what I need to do for my family.

    I have no idea what it is like to be told at such a young age and so much to live for that you have this awful disease, but allowing for that I find it impossible to understand why he has done what he has done and why I'm getting the blame for it, I can look my children in the eye and honestly tell them that I have done my very best, but what do I tell them about why their dad is no longer here?

    My friends and family are I think relieved for me, in reality my daughter who is now 7yrs old didn't even notice for 2 days that he wasn't here and at no point in the last month has she said that she misses him, but she doesn't realise how short his time is, or how precious each second with him is......nor seemingly does he, or if he does he is choosing not to spend it with us......

    I know it is his life and his choice, I know he is not anything like the man he used to be, I know he has every right to be angry and upset, but I also know that none of this is my fault.

    Why can't he make the most of every day?
    Why can't he be a dad to his children?
    Why can't he be just a bit nicer to me?

    I was at my wits end a month ago which is why I made that call...I didn't make it because I didn't want to look after him, didn't care any more, I recognised that he needed help that I couldn't give him and I desperately needed a break,


    I'm sorry this is a long missive, just really need to know if anyone else has ever had this and what on earth do you do?

  2. #2
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    Becci a failed carer you are definitely NOT.the mental stress on caring can be huge.you deserve a medal for coping so well.mnd doesn't just affect the sufferer but everyone.it does sound like ftd as well.who do the so called professional think they are anyway, you know your husband better than anyone else and it is clearly obvious you know his character has changed.taking his anger out on you is very understandable he just wants someone else to hurt as much as he is and the nearest ones always get the sharp end.you can hold your head up high.ask all family members to come to your house and see what they think about his behaviour and the best course of action on his care.it will probably be news to his brother about being nominated as main carer!I lost my husband a year ago to mnd and sometimes had to hold my thoughts and walk out of the room but luckily that wasn't often.rob never said why me.he only had it 11months and looking back I really don't know how we managed to get through all the physical and emotional challenges but we did.your husband clearly hasnt accepted it and is trying his best to push you away by being unkind to you.get that meeting sorted and if he has to go into care even short term you can get organised.your children need their mum as well.it's not only the emotional things to deal with but also financial legal matters to sort as well.I needed to get power of attorney as rob was unable to sign anything.personally I would look into how he could lose money gambling if he couldnt use his hands.something not quite right there.get in touch with mnd connect as regards ftd.post as much as you need to here you need a lot of support and will definitely
    Get it from us.this forum was and still is my lifetime.love.caroline

  3. #3
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    Hi Becci,
    What a tragic story, we all hate MND but I would not wish it on my worst enemy yet alone my wife, that is terrible. I would record his behavior towards you on your phone then you can play it back to all those people that do not believe you. If he wants to go to his brothers then let him. They would not put up with his behavior and send him back. You could try social services that you cannot cope anymore. You should be receiving Incapacity Benefit or is he gambling that away.
    When I was diagnosed with MND it was the worst news that I could have and I must say I was devastated, but I thought there is nothing I can do about it so I made up my mind to live every day as my last and enjoy what time I have left. I have met several people with MND and go out with them and our families and enjoy ourselves.
    Derek

  4. #4
    Forum Member Terry's Avatar
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    Crickey Becci;

    Welcome to the forum. I have only scanned it so I hope I have picked most of it up.

    How you have managed to cope for so long without a break down I don't know. By the sounds of it you should have parted before this.

    Having FLT does make it extra hard on the carer and there are a couple on here that have it. I can see the extra attractiveness of gambling with this disease as it is a thing that we can do easily and we could study and work at something. I am not condoning it.

    I do not consider you as a failed carer, I thick all carers here wished they could do more or things worked out better.

    Hugs, Terry
    Last edited by Terry; 16th February 2014 at 12:59.

  5. #5
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    What a tough time. It sounds like you did the right thing.

    Although your hubby is suffering and needs help, you are the most important person here. It is the carer who has the pressure to keep things together for everyone, make sure everyone has what they need. So your basic needs must be met first so you are in the best position to support the family.

    Perhaps he is resentful because you are not able to give him everything he feels he needs. This does sound extreme though, surely there is something the professionals can do to help?

    Getting carers in was a big step, but I asked for help as I could see hubby was faced with an impossible task each day. And it has been great. I get 30 mins of help to get dressed, and it's not punctuated with the carer going off to make a breakfast or do a school run. I'm thinking of getting more help In the evening so hopefully hubby gets a chance to sit down.

    I've cared for hubby for 5 months when he slipped a disc and was unable to do anything. so I am well aware of the stress carers are under. Take care of yourself. You are all in a particularly difficult situation. Have you looked into counselling for your older child? Mine are 8 and 11, coping well overall, but the counsellor helps to make sure they are dealing with the issues is a helpful way and they love going to see her. It is arranged through the hospice.
    Last edited by ccvsd; 16th February 2014 at 12:49.

  6. #6
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    Hi Becci

    Welcome, and sorry to hear your heartbreaking story. I’m not a marriage counselor but agree with Terry, sounds like you guys should have parted ways before things got this bad, if you were dealing with his verbal, emotional and mental abuse prior, which sounds like you were.

    If your looking for others opinion, mine is a simple one, let him go. You need to make yourself and your young children your first and most important priority, since clearly he is not regardless of this illness or not. Agree with ccvsd as well, seek out professional counseling if you can for your own sanity and the well being of your children.

    What I found so heartbreaking is you think of yourself as a 'failed carer' in my opinion you sound like a 'Superstar' it is your husband who failed you, not visa versa, and not mnd.

    All the best to you
    CCxx
    Last edited by ccinjersey; 16th February 2014 at 14:00.
    .

  7. #7
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    Yes, CC, I think caring is one of those things were you see what you haven't done rather than get a sense of achievement for the incredible amount of work careers do everyday for other people. hubby considers himself as a failed carer yet we all eat well, are dressed in clean clothes and happy thanks to him.

    Becci, be proud of what you have achieved so far and look after yourself. You sound amazing!

  8. #8
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    FTD coupled with this horrendous disease explains everything.

    A gene test on the NHS will prove FTD if he has c9orf72.

    It would seem like BrainStorm have the cure, just that none of us can get it.

  9. #9
    Forum Member john's Avatar
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    Hi Becci,

    You have done too much without help already. How anyone can run a business, a home, two kids and a disabled hubby is beyond me!
    You have two choices here, you either accept that he wants to be elsewhere and concentrate on the three of you going forward and making life as good as it can be for you or you see if you can retrieve the situation with hubby. To explore this you probably need to sit down with him and discuss what he wants going forward and what you want and see if there is enough common ground to make it work. Not going to be an easy conversation especially as he seemingly has mental issues but it may just help you to make a rational decision as to what is best for you and your children.
    If he is willing to stay in the family home then you need power of attorney so you can stop him spending money you can ill afford and you need the care support in place so you have time for the business, the family and hubby. If you become ill again everything collapses.
    You can ring mnda connect who have their contact details under the tab above and talk to them about every problem you see and they will offer advice as to the best way forward.
    Hope you find a way through all this. You are not a failed carer just another victim of this illness.

    John

  10. #10
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    Be co, my heart goes out to you. I have been a carer for 7 years since my husband was diagnosed with braintumour until today when MND takes it's toll. Really hard but not as hard as what you have gone through. Do use the members of this forum, they a strong, wise and ambitious crew. Virtual hugs from me to you.

    Magic

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