Forum

I'm struggling

Hi, I don’t normally do this kind of thing, bit I’m really struggling and have nobody to talk to. I’ve had MS for 20 years and was deteriorating steadily until about 5 years ago when I pretty much fell off a cliff (not literally). I now have real trouble walking, can’t cook safely, etc. so pretty much can’t look after myself. I now feel I’ve become an intolerable burden on my wife and child. I feel awful that we can’t do things together anymore. To my little lad, bless him this is his normal so he copes remarkably well. My wife though not so much. The resentment has slowly built in her over the years and she now dispises me and forsees a bleak future as my carer. She is not wrong. First and foremost a marriage needs respect, and this has now gone. I can’t change light bulbs, decorate, mow the lawn … I think we are pretty much done as a marriage and I cannot blame her. She did not sign up for this, and it’s not fair on me forcing this disease to ruin two lives. She deserves a normal life, that’s me speaking and also how she feels. As I am pretty much unable to function independently anymore I really can’t see any point going on when we separate, other than for my little boy. The thought of never seeing his face again or hearing his rubbish jokes makes me cry. Unfortunately though, I think the burden I would be outweighs even this. Not sure why I’m posting this, but I feel so desperately hopeless. Thanks,

so sad for you. what about sheltered accommodation? one of our regulars, Crazy Chick, has done this and is made up with the difference it has made. hopefully your son will be able to visit. wishing you love and light xx

2 Likes

A difficult situation - The present state of things is not your fault - your wife is responsible for how she has reacted/responded to your m.s. Without making any judgement some spouses are supportive others are not - how they cope is their responsibility. She may be unhappy but that’s not your fault. Perhaps you may decide to separate - that does not mean YOU have to move out and there is no reason why your son can’t stay with you - I hope you are not being browbeaten. On a practical level there are schemes in existence which make it possible for people to live at home. Perhaps your local m.s. society could help. But the one thing you need is someone to support you - is there anyone you could ask directly - a relative, friend, neighbour. PM me if you like.

Please, please, please don’t assume you know or are to blame for how your wife might feel.

You have more than enough on your plate than to be worrying about everyone else too.

I really feel for you and I hope you are able to find a way forward. As several have suggested, have you looked at sheltered living? Or spoken to the MS Society helpline? Or an online counselor?

Feel free to PM me if you want,

Sending love and support,

RL

Not sure I agree with the suggestion that the OP should look to move to sheltered accommodation.

Great post Krakowian, I totally agree with all of it. (dont faint lol).

OMG MY heart simply goes out to you.

I am going to be honest and blunt here. We don’t get married and ever expect it will be like the films, do we? Getting married comes with huge responsibilities on both parts. Neither partner has any idea what is in store for them.

When i lost my husband he was sick for at least 10 years before i really got sick, and even sex was out of the question for a long time, as with his COPD he could barely breath. I never once thought to leave him, I loved him unconditionally, then I got sick and well we were book ends to be honest. We never had competitions as to who was sicker lol. He still cared for me as no matter how much he was ill off he went to work. To support us both.

When i met him i took on his 5 year old son too as he was divorced, and he came as a part time package. We both looked after each other, because well hell we loved each other until death do us part and sadly in my case it happened he died.

Your wife is being selfish and only thinking of herself not even of you or your son. Now then you stay where you are, i am not sure if its a rental or mortgage. You see a really good solicitor, and you get ACTIVE. What do you mean she DESERVES A NORMAL LIFE?

From what you wrote hell she doesn’t deserve a normal life if she cant even take her responsibilities of a mother and wife seriously.

Who the hell cares if you cant change light bulbs or mow gardens, neither could my hubby, but he could fix his car lol, he chose not to do those things as he knew we could get someone to do it for us. I.E. a good handyman and gardener who didn’t cost us the earth. I didn’t mind as Mike was a hard worker and sometimes was away for weeks in Indonesia, or malayia, or arab emirates sweating his bits off making a living for us both. So we had enough saved to get these things done for us and he knew i was ok when he was away.

This sentence was a red flag to me you wrote:

I now have real trouble walking, can’t cook safely, etc. so pretty much can’t look after myself.

So what does your wife do then? When i read it i assumed you were single…

Now if you don’t have a lot of money and your disabled then you ring your adult social services department and get an assessment done. They are very good actually. If they think you have a need and you cant afford it they will pay so many hours for you to have a care worker who will take over from your wife, and allow you to have a normal life with your child and home. Or at least a better one. I had 10 hours and it was amazing how much i had done in those 10 hours.

You can also apply for direct payments. Just because your male doesn’t mean you cant.

If you can stay where you are that would be better as it will give stability to your son, your wife obviously can take care of herself she seems to be doing that already.

whether she stays with you or not you need to put plans in place for YOUR FUTURE with your SON.

Sorry Anon but i have to say this but you are feeling a little sorry for yourself. Men don’t do this well to be honest my husband was a bit the same and I used to shake him up a bit lol. Stop downing yourself. Your still a man, a human, you have needs, and you obviously still have emotions. Don’t let your wife bully you into thinking you are less of a man because you were dealt the wrong card, MS.

MS is a pain in the back side and yes it robs us of so many things but we don’t have to let it rob us of our life its up to us to fight it and fight hard, and if you truly love someone, yes you have to let them go if you feel there is no future with them, but you don’t have to let your son go, no way you are entitled to see him.

You need an advocate. Have you no family or friends who can support you? Ring the MS Society and ask them for help they are really good. If you need to rant you can rant to me anytime you like.

Do not let your wife take away your manlihood. You can still do things. let her change the light bulb and you hold the chair. Its a partnership RIGHT? You cant cook, well neither can i really but i have learnt how to easily. That’s what halogens and microwaves are for right?

get a gardener to do the grass, or teach your wife how to use the mower lol.

My friend does it all. she works and she mows the grass, her husband works but he does nights so he isn’t around much during the day when the jobs need doing, he isn’t disabled, but they have learnt how to work TOGETHER.

Perhaps you cook because your wife works all day, and you try to cook for when she gets home? I don’t know your circumstances but you have shared some of it with us, and obviously not happy.

so its time to shake a leg and get moving hun. There is help out there for you.

ACTION.

MS Society ring them

Adult social services in your area, ring them and ask you for help.

Talk about direct payments.

Look in local newspapers or facebook groups, get yourself a handy man and gardener they really are not expensive.

If you don’t have a lot of money some councils have gardening and DIY schemes where they have subsidised helpers.So ring them ask.

Get a careline so you can be safe. A care line is an SOS system.

Ring a solicitor find out what your rights are.

Talk to your GP you are depressed and need some support ok. Explain what is happening, as they can support you with any funds you might need or even help, i.e. Occupational health and back up action plans for you.

If your that bad have you applied for PIP? Personal Independence Allowance, if you got enhanced in both it would give you over 500.00 more a month. You could afford to buy yourself a mobility scooter or even a small power chair. I mean what stops taking your son out to a park? With a power chair or scooter you can still go out and do shopping. You can apply for a wheelchair if you have the need through occupational therepy.

As the late great Cecil B. DeMille said…

“The person who makes a success of living is the one who sees his goal steadily and aims for it unswervingly. That is dedication. ”
Cecil B. DeMille

PS. Yes i moved into sheltered from a 3 bed house as it was too big and too lonely. Its not proper sheltered though its called independent living but they have loads of things on and lots of people living here now do not have disability but they have to be over 55. the guy above me works all day in engineering he moved here when his wife ran off with another bloke.

We have several living here actually, and single older women several work. its a mix between people. Some of them join up at night in the lounge and have a drink and yarn.

They enjoy it as they are not lonely anymore. One of my friends i have met Eve is just over 50 supposed to have dementia. anyway she left her hubby and was put here as she had a FUNNY TURN and her sisters didn’t think she was safe on her own. she has her 2 dogs and she often has her granddaughter come to stay in school holidays.

Yep there are a right old mix lol. You don’t need sheltered with lots of people disabled it would depress the hell out of me, but you can find the units which have independent living and you can get your own care people if needed.

That’s only if you have to move. Its an option.

I love my flat its easy to keep clean and i dont have to fix anything, just ring the council and wallah the bulb is changed for me lol.

Now then come on anon lets be having you, ACTION ok. xxxxxx

This might help you a bit.

(actually useful for anyone regardless if they are disabled or not but cant cook.)

sorry i did go on a bit lol.

but the one thing that worried me was hidden in the lines. Your son WOULD NEVER BE BETTER OFF WITHOUT you. Better he remember you as the person who fought hard for you both, then the one who decided it was all too much like hard work. I hope you get that. Its the truth. Its way too easy to just give up. The devastation that an action like that can leave is irreversible and will have an affect on your son for the rest of his life remember that.

Thats why i really think you should see a GP. you know what i mean. xxxxx Please if you need to chat chat. ok.

6 Likes

Very sad news. Take care your life.