Where can I get Support and advice

Specific disabilities and conditions
1

Hi, I am caring for my husband who has MND and we have 4 children age between 2-16.

I am struggling to cope with the rollercoaster of his mood swings and am feeling guilty as the children are suffering.

I can manage the physical aspect of caring ( he cant use his arms, is on a NIV and PEG fed) and when my husband is in a good mood he can be lovely but more often than not I am walking on eggshells.

Small things can spark an argument ( like the door not being locked or the kids leaving their shoes in the hall or spending too much at the supermarket. The worst faux pas being mentioning my stepson -in any capacity…it used to be just if I pulled him up about something, but now I can’t even mention his name without it sparking world war 3)
When my husband gets angry he calls me names, lashes out verbally and occasionally kicks out at me, has tried to stab me with a screw driver, breaks things or threatens to break things that I hold dear such as my piano or paintings I’ve been given or slit the dogs throat (he cant even if he wanted to)
Threatens me with divorce, saying he will tell people I abuse him and the children… he writes me texts saying I’m a liar and has asked me to respond admitting things I haven’t done , ( sometimes he is so convincing I have to think did I really do that?..you start questioning yourself after a while) has phoned his relatives and asked them to pick him p at 11 and 12 at night and taken his son with him…
these moods last for DAYS but he is nice to everyone else apart from me. If I walk into the room he says in front of the kids " just f off will you, get out, your an effin b@@@ etc, but when he wants something like a shower or a cup of tea ( he can still drink) hes nice until hes got it and then horrid again. If I try and talk to him he just repeats F off or starts shouting HELP HELP at the top of his voice so my step son comes down and then hell get him to phone someone or pretend to until I back off and leave the room. If I leave him alone he uses other people by being super nice to them and nasty to me to isolate me . Iv’e tried giving him a hug …“your abusing me”. I’ve tried leaving the house for hours ( knowing that the 16 year olds are in to look after him) …when I come back hes the same.
If I cry he says " stop that shit you always crying"
When he is angry I don’t recognise him… the look in his eyes is of utter hatred. If I get annoyed back at him or state my case he demenes me or tell my 2 year old “mummys a pschyo”
He was an army sergeant major and has to be in control of everything and I know that MND robs you of everything…it an awful disease,
I KNOW Its those closest person that get it in the neck and I KNOW he frustrated not being able to breathe properly, eat, very rarely goes out now and cant do anything for himself really…confined to a chair watching TV…it must be awful and I understand he has to vent his frustration somewhere but I find it so hard to deal with being treated like this.

One of his brothers who helps us out a lot knows what goes on behind the scenes and I have confided in my family and a few close friends but I am not sure how much is the illness and how much I should expect to put up with.
The last 2 years have been awful. I want it to get better but its just getting worse.

I have been to my GP in tears - who called social services ( I managed to fob them off by telling them it was just my husbands frustration with his illness)
I do have a support network - three-monthly meetings at the school for my girls, but my stepson doesn’t because my husband disagrees with it. My husband gets angry about those meetings so I dread them, never knowing whether to tell him Im going, choing the right moment to say something.
The 2 year old is in daycare 2 mornings a week which I have to myself ,but often spend cleaning the house.
when its been really bad I’ve tried ringing the domestic abuse help line but no one picked up. Ive called samaritans and cried. Ive called the MND volunteer lady in my region and cried. Iv’e been to see a counsellor and poured out my troubles… which helped and bit but my husband got angry about me going to that.
sex is an issue…he will be nice to me for a few days and then as soon as we do anything he immediately switches back to being nasty,… saying he should pay someone to come to the house she would cost a lot less than keeping me and my lying daughters, etc etc ( that is so cruel and hurtful…I don’t believe it is a clear thinking person…I would never have married a man that treated e like that or any woman like that)

I don’t have any support from most his of family as my husbands last wife of 15 years died of cancer in 2014 and has been put on a pedestal and as a new-comer on the scene and as my husband has painted such a bad picture of me to them they think its me thats the issue. ( Although I think they are beginning to see whats going on as is my stepson but no one will stand up to my hubby)

I love my husband dearly. He WAS/ IS an amazing man and some of the time this shines through but I am having trouble dealing with this and don’t know who to turn to … how much is the illness … I can’t ask for him to be assessed…he has to and he doesnt believe its the MND thats causing it… apparently its me! ( we have all heard that one before)
Anyone… how do you deal with the anger? Who can I turn to that wont get social services involved?

2

Heidi, welcome to the forum.
The time has come for you to take control of the situation, I’m absolutely dismayed that no one has done anything to arrange the support you desperately need. What on earth is the GP doing to help? Does he know about the abuse and threats???
Your husband NEEDS to be assessed for NHS Continuing Healthcare ( all the medical and social care he needs, free of charge) the more care he accepts, the longer he can stay home. The “bottom line” is that you need support for him so you can care for the kids and run the home and get away to do something for yourself regularly.
His behaviour is deeply worrying, and clearly he has some mental problems now, I don’t know anything about MND, so can’t say if his verbal abuse is due to changes in the brain, fear, or frustration, or …?
What I can say is that his behaviour is totally unacceptable.

It would help us a bit if you could give us information about the ages of all concerned.
How are things financially?
Do you have Power of Attorney?
Is your home adapted to help you care for him?
Last, and worst of all, do you know how much longer your husband is likely to live? I hate asking this, but from my own experiences, it’s all too easy to bury your head in the sand and not think of “afterwards”, but if you can make a few tentative plans about what will happen, what you need to do, it might make your current situation a bit more bearable.
Is anyone talking to your children about the current family situation?
Have you thought about them attending a Young Carers Group so that they can talk to others with a disabled member of the family?

3

Dear Bowlingbun,

Thank you for your reply. We have a continuing health care team on standby which was arranged after a bout of pneumonia in April (in which he was given a trachy but it has since been removed) and a number of hospitalisations through summer. The problem is he doesn’t want the care team coming in as he finds it intrusive, inconvenient and embarrassing and is never ready when they come and had a habit of sending them away. Consequently this has been put hold.

MND can affect the brain, I think the stats show that 30% of patients show some degree of frontal temporal dementia and they have emotional liability which means they can laugh, cry at unusual situations or at the drop of a hat ( my husband went through a phase of this but now he just gets angry instead)
I called his consultants secretary who referred me back to the MND advice line and they said there is no way he can be assessed unless he agrees to it. ( sometimes the abuse has got so bad I have considered calling the police or social care team but more often than not just walk out of the house instead and take the dog for a walk or phone a friend).

I know he is no threat to the kids and should the police or social services arrive he would appear totally normal and probably turn the whole situation around to make me look like a lunatic and accuse me of abuse ( he has stacked up about 5 occasions over the last four years (1) early on in the relationship I once threw a phone at him in a heated argument , 2 I asked him to smell something by putting something too close to his nose ( he can’t use his arms to push it away -so that’s abuse) 3) pushed him away when he was kicking my piano and charging at me with the baby in my arms 4) once he toppled over as we both tried to get something at the same time during an argument and 5) I tried to take the car keys away when he wanted to drive away angry with my step son… he shouldn’t have been driving at all at this point, as when he laughed or got upset his arms stopped working all together ) and repeated them so many times to my step son that he will back him up no matter.

I’m not an angel. I lose my shit from time to time mainly with the kids for the usual stuff, leaving pots out, dirty bathrooms or messy rooms ( my kids - I don’t reprimand my step son ). But most of the time I can remain levelheaded and just get frustrated more than anything and my temper will subside almost immediately . I believe I’m a good mum and do whats best for the children …which is what’s upsetting me - I know this situation is damaging to them.

My husband is 57, Im 45, the children are 16 , 16, 11 and 2

Financially we are OK at the moment because we have his army pension and PIP . My husband owns the house so we don’t have to worry about a mortgage, but with four kids the savings we do have are getting eaten away quickly ( literally!).
I had a well paid part time job previously , but when I met my husband, gave it up to care for him. He controls all the money apart from the tax credits which I get and spend on food and fuel. I don’t have a pension but try not to worry about the future as legally I don’t think I can be thrown out on the street with nothing. I don’t have power of attorney or guardianship over my stepson and this is never likely to happen. The house is on the market to release equity, so so far it isn’t adapted but as my husbands weakness is in his arms and breathing ( he can still walk) there isn’t much they can do to make things easier for him and he doesn’t want any changes as it would “take value off the house”

My 11 year old attends Cherished a group at school which allows kids to talk about their worries and helps them with self confidence. My eldest daughter has access to a councillor at school but my husband discourages my stepson to be involved in any form of counselling ( despite his mum dying at the age of 12 and his dad terminally ill) as he doesn’t believe in that sort of thing.
My stepson does exactly what his dad says even when he can see it’s the wrong thing to do ( eg calling relatives when his dads throwing a wobbly - knowing how it will make me look ( Its hard not to feel resentful towards my step son at this point but I have to tell myself its not his fault!). I have been called the “evil stepmother” so many times in front of him now and told that I want his inheritance ( another reason we are selling the house) that I believe the poor boy actually thinks i’m the antichrist ( I have to laugh… or Id be in tears all the time )
I have tried to speak to him in the past but it doesn’t work, so now I just let him do what ever his dad says because its easier and I dont want him worrying about divided loyalties when his dad is so ill.
During the school holidays my two eldest daughters go to my mum and dads for a few days and I have offered that my stepson can go too but again his dad says " he wont want to go " and doesn’t give him the option.
Im still breastfeeding the two year old (and absolutely shattered ). She sleeps with me as my husband sleeps downstairs in a recliner chair - he cant lie flat.

I’ve had a carers assessment from the council but as my hubby wont accept help ( unless its his family - most of whom would prefer it if I just left ( if they come to the house they just drop in comments about how wonderful his last wife was ;-/ so to avoid the hurt I try not to hang around now) and we are over the 15K income limit for extra child care hours there’s not much they can help us with. Most of my running around is for the kids after school, shopping that sort of thing.

I have a cleaning lady come once every two weeks who we pay for to hoover and do the bathrooms which is a god send.

With MND its hard to predict how long a person will live… and yes I don’t think about it or plan for it because i try and ignore that eventuality and concentrate on today. Sometimes I think just leave and spare the children the pain of losing their dad and step dad ( my girls dad died of lung cancer last year - they hadn’t seen him for over 5 years but it still upset them a lot)

Again my husband scoffs at that saying they cant possibly be as upset as his son losing his mum … probably not but they still need kindness and understanding .

There are so many things when I start writing and I feel guilty for over sharing.

My MND support lady when I get upset and go out of the house to call her says " remember it isn’t forever" …its true and I feel like I shouldn’t complain and just get on with it but its constant, not every day but most days… verbal abuse, put downs, control, playing one family member off against another…
Its wearing me out, wearing me down and sometimes I just want to pack my bags and escape n the next package holiday…

Except the cheap ones are always twin share ! :wink:

Thanks again for listening

H

4

I’m older than you, now 66, I’ve had over 40 years of caring, for a total of 10 carees, my husband, all four parents, and brother have died.

There is a phrase used for elderly parents, that of “Elderly Toddler” and frankly, it sounds like he is being a nasty toddler!

Are you getting any help from the Army charities, maybe he needs a wake up call from another man?

DO NOT SELL THE HOUSE TO RELEASE EQUITY. You will regret it forever.
I’m worried that your husband is in control of all the money, given his illness and the way it is affecting his reasoning.
Keep your phone with you and record him when he’s abusive, and DO call the police if you feel the need to, then you will have clear evidence.
Frankly, it sounds like he is regularly abusing you and it is setting a very bad example for the kids. They have a right to a happy childhood.
Finally, it is time for you to give up breast feeding. I know what a joy and a comfort this can be, but you have too many challenges in your life at the moment, and you need every scrap of energy for your life. The baby will be fine without breast feelding now.

Is your husband claiming PIP?
Are you getting Carers Allowance?

5

“I’m not an angel”

Actually, I think you’re a saint!!! I cannot imagine the hell of your life, even when you describe it so terrifyingly.

One thing I would say is for your to start filming his outbursts at you and the children on the phone. That will provide proof that he is not ‘reasonable’ in the slightest. Don’t let him destroy the phone - send the videos you take of him immediately to a trusted person who will keep them safe for you as ‘witness to his behaviour’.


As for your husband, although it is tragic that MND is killing him slowly and hideously, it is NOT your fault he has it. His ‘hatred’ is probably for the illness crippling him and killing him…

However, despite the MND, the people who are your KEY responsibility are not your husband, but your children. They MUST have as happy a childhood as they possibly can.

And that may mean without living with this ‘bombshell’ of a dad who can’t control his emotions, who is behaving appallingly to you, to them, to everyone it seems, including himself.

I personally think it’s time for you to consider divorce. You may feel you should not ‘abandon’ him in his illness, but he is not doing anything to deserve the continued sacrifices you are making for him. I don’t care whether his behaviour comes from his MND, or from PTSD from army days (so possibly, alas, as well with vets), or just from his rage at his fate, or from his personality etc etc.

He has NO right to treat you and his children or stepchildren that way. NO RIGHT.

If nothing else, I would recommend, myself, that you do a ‘feasibility study’ so to speak of what would happen if you divorced. Don’t worry about ‘what would happen to my husband’ - at the worst he would have to ‘go into care’ in some way. But what would happen to YOU and the children -

In a way, sadly, the ‘best’ outcome would be for HIM to ‘move out’ (eg, into nursing care), leaving you and the children in the house to be happy.

I know that ‘in the end’ MND will, grimly, kill him, but he is making your life hell still, and for years to come, and this is your children growing up, and their childhoods ruined.

It’s a dreadful situation, but your children come first. I hope that they will give you the strength to make difficult decisions…

Life is VERY cruel sometimes, and MND is one of the cruellest…

6

PS - are you getting any support from the Veterans Associations and support groups and charities? Even though MND is not ‘war injuries’ the organisations will be used to dealing with the ‘fall out’ of severely injured veterans (eg, limbless, etc) who therefore are finding life incredibly difficult to cope with, as are their families.

Just a thought!

7

In the case of a divorce, I believe that he would have to leave the family home, rather than you and the children.
Maybe contact Citizen’s Advice or a solicitor. (Usually solicitors give half an hour free session).