Im new to all of this but in need of help and im not sure where else to go. My father has Ms and has had it for 15 years, its never really been a problem as a close family we got through it. My brother is 28, my sister 25 and im 23 recenttly married and moved out of home. On boxing day we woke up to find my mum has left my father with no real reason. Just up and left. This has caused so much hurt, pain and stress. My dad has detereated massively even though up until now his still be able to run his own company and support himself. My sister is going travelling next week for 12 weeks and she is finding it hard to want to leave. My dad was able to go out everyday with my mum, even if it was just for a coffee, now he cant leave the house and im going to have to move in for the next 12 weeks. Im having to change his sheets and im always worrying about whats going to happen to him while im at work. Im a teacher so I cant leave work.I feel so guilty, sick and worried about what the future holds. Hebkeeps saying his life is over as he no longer can go out, go on holidays or see his friends as he no longer has his wife, my mum. I cant believe she has done this to my dad or my siblings. My dad has his own company so his never recieved any benefits or help. After lots of tears and sleepless nights im ready to accept help. Any help or advice would be great, thank you. x x x
What a horrible situation for you all.
I think that you and your siblings need to sit down with your father (or without him, if he is too distraught to be making much sense) and think through together how you are going to deal with things. Family dynamics tend to say that there is one person who takes on the role as lead grown-up. That sounds like you right now. The risk is that everyone else from that point on regards the problem as being chiefly the main grown-up’s problem (i.e. yours) to solve, with them chipping in when it suits them, and you left carrying the can the rest of the time. Please be aware that this can happen. Make sure it does not happen to you.
What are your mother’s intentions? If your father is so disabled that he needs live-in care (and your moving back in suggests that this must be so) then maybe she has just had a belly-full of caring for an invalid and has had to head for the hills for the sake of her sanity, but it might not be for ever. Even if she doesn’t feel like telling your father what are her intentions, she jolly well owes it to you.
One way or the other, the priority for you needs to be setting in place care that is not delivered by you. If your father is not entitled to anything from the state, that means he will have to pay for it. My strong advice would be to talk to Adult Social Services in your area and explain the situation. They will do an assessment of his needs, whether they will be funding any of their recommendations or not. But you do not need to wait for all that - you know what he needs now, better than anyone. The thing you can do right away is to get in touch with one of the private care agencies that Social Services use and set in place what he needs right away so that you can get back to your own house and on with your life. Beyond the immediate, all your focus needs to be on setting in place care that is not delivered by you. Do not let yourself be sucked into being a martyr.
I am sorry that you have all this to deal with. Good luck with it all.
Alison
Oh dear, what a sad story.
Has anyone spoken to your mum since she left, to find out why she left and is there any chance of her returning?
Thing is, as children, there may have been things going on that your parents kept from you.
Try not to side with either parent, until you know the facts.
But having said that, you are the one who can see how all this has affected your dad and of course, you feel sad for him.
With your dad having his own business, this tells me he has a good brain and is capable of organising. So perhaps it is a cry for help in the way he has deteriorated in his health.
There is a lot of talking yet to be done and you shouldnt be the only one to carry all this worry. Your siblings should be helping you sort things out.
luv Pollx
Thanks guy.
My mum first left when I got back from my honeymoon in September. The reason is because of another women, not on my dads side and not in a sexual way. My mums best friend doesnt believe my mum should have to live with a man like my father… It’s a long story and is all to do with money (her husband has too much money and thinks my mum should be treated the same as her). It’s all very confusing.
Unfortunately I know more than I feel I should about my mum and dads relationship as when my mum left the first time they both talk to me. To me it seems that my mum is caught between two people she loves and can’t handle the pressure anymore. She has said so many hurtful thing to us children, one being she wished she never had kids, especially me as I’ve caused the most problems (healthwise). My mum come back after my sister begged her to but showed no signs of wanting to be there. They went to counciling and she walked out. I know she has an underlinging weight problem. She is very underweight and looking ill herself.
My father still runs his own clothing company but from his own office at home so it’s never really been an issue. Money is not really an issue at the moment as my dad has always been the breadwinner. My mum hasn’t really had to care for my dad as of yet. He has always been able to do his own thing but since this has happened his become so poorly that he can’t stand up without falling over and he can’t get to the toilet on time. It’s never been an issue if he has ever had a fall as we have always been there to help him up but now things have changed. My fear is him falling in the night or the most common is his legs giving way with drinks or food, meaning that he is always smashing things and cutting himsef.
Im still not sure what the first step to do is and also how do you get past the guilt and sadness for him. I see the truth in what he says when he says his life is over. My mum and dad have been retired for a long time but only just started to enjoy real luxury holidays as my dad has always worked. He can’t go to there holiday home in frinton now as its a fair drive for him and also all his friends are couples. He hasn’t really got any real close male friends that he can see all the time. So how do I explain things are not over for him? He says he wont ever be able to go for meals with friends, go on holidays or even go out to catch up with friends as they are all couples.
I really appreciate help, I feel so lost and so sad that im not sure what else to do. We have had such a perfect upbringing and perfect little life that this has shattered everything and more so for my dad. I just wish I could make things better but I know there is nothing anyone can do to take away the pain from him, myself and siblings. xx
Hello MrsMcCarthy
It concerns me, that you say at the beginning, what a close family you are, yet your mum has walked out and you all seem surprised. Please believe me this is not me criticising, I’m just wondering If your mum is depressed and has hidden it well.
It could just be she wants out of the marriage…either way, she owes to your father to explain herself.
Do you know where your mum’s gone, so you can try and sort things out.
Failing that, your local social services should be able to help with regards to support for your dad.
I do wish you all well and hope you get the help you need.
All the best to you
[/quote]
Sorry!! was typing mine when you sent yours
Another apology…your not a close family…I’m giving up lol
‘One thing at a time’, is what I would suggest. Set aside the big existential problems about the meaning and value of life for now. Your father is going to have to figure those out for himself: you cannot do it for him, and you will drive yourself crazy trying - it is all just too overwhelming. You also have grief of your own to deal with, but that will take time to work through. I think you can use your energies best right now by addressing yourself first to smaller, practical problems. They are more easy to solve, and also have a quicker impact. For instance: Google ‘trolley for disabled person’ and you will easily find something that will allow him to make himself a meal and a hot drink and transport them safely. Don’t panic - you will get through this. Just take steadily and try to pace yourself emotionally. Good luck wth it all.
Alison
This is the first time I have ever posted anything, but felt I must as my husband left me last year and I have been going through very similar challenges to your Dad including my ms getting a lot worse and feeling like the world has ended. The circumstances are all quite overwhelming as you and your Dad are experiencing. The piece of advice about just focussing on little things (certainly in the short term) is spot on. I worried endlessly, amongst other things, about how I was on my own, had no one to go out with anymore etc. so I changed my focus to building on existing friendships. Even people I didn’t know that well before. These people have been my saviours. I suggest Getting your Dad to turn his attention to this. ( although I don’t know how exactly this may vary in a man’s world) You will(hopefully) find that people can really pull together in a crisis and offer a huge amount of support. Be open and honest with them. Don’t be afraid to ask. My support network has grown massively as a result. On a practical note, go through all the difficulties/risks at home and work out how to help overcome each one eg get him an alarm he can wear and call in case he falls. Hopefully your local MS nurse can tell you if there is such a service in your area and the occupational therapist can also give you some guidance about overcoming practical challenges.
Mrs Mcarthy
Hi. I’m so sorry to hear of the trouble you are going through. It’s never easy when a family splits up, whether or not MS is involved.
I can see you feel you have a strong feeling of responsibility to your dad and you clearly love him very much. However, you need to think of your own needs and not feel selfish about that or that by doing so you will be loving your dad anyless.
Congatulations on your recent marriage. It’s good that there is someone else in your life that you love. As well as to your dad and yourself you have a resonsibility to your husband and your marriage, and at this point in your life they should have priority - I’m not saying ignore your dad, just get the balace right.
There are other sources of help for your dad -you don’t need to take it all on your own shoulders. Your dad needs to accept responsbility for his life too, although I can understand he probably feels his world is collapsing around him at the moment.
Please call in other agencies - Social services, the MS nurse if there is one available, professional agencies, telecare aids like the personal alarm mentioned - whatever help you can get.
Please as don’t be too hard on your mum. Carrying any bitterness around with you will tear you apart. Try to move on and focus on the joys your new marriage will bring you. Give your dad time too, but please realise you, your husband and your marriage are equally important.
Good luck,
Hi I hope I’m posting this correctly. I’m waiting to get referred to a neurologist at the mo but wondered what others thought about my symptoms. It started 5 to 6 weeks ago driving at work and I got instant pins and needles in both fee and both hands and like little short electric shocks pretty much everywhere else in my body. The bad pins and needles has gone just a bit in my hands and top of my feet. I’m still getting the little tingles now and then anywhere and today my face is a bit numb around my mouth and nose. Oh and the tops of my feet were numb but nit so kuch now but my little toes are numb . My little toes seem to come and go as numb. What does anyone think please ? I’d be do grateful for any input as tbh my anxiety levels are sky high Thank you
Hi Ian I think you’ve posted your message in exactly the wrong place, you’re not likely to get many answers that help at all. You’ve posted on a three years old thread on the Carers Forum. I suggest you go to the New diagnosis and before diagnosis forum. Once there, hit the button marked New Thread, give your query a title and then post your message. There are many people in a similar position to you who use that forum. And lots of people with more experience who try to help people with the route to diagnosis, or the route to not being diagnosed as the case may be. Chances are that you are going to hear that it’s impossible to judge your symptoms. Essentially you need to see a neurologist, who will take a history from you, do a physical exam and possibly send you for some tests. Hopefully you will get some useful answers. Sue