My girlfriend has got really bad ms.She got diagnosed about 3 years ago.We have a 2 year old daughter and have just move into a bungalow to make it easier for my girlfriend as she find life really hard living with her ms.Im her full time carer and I feel that ms has distroyed what she was able to do when we first met and ms has taken her away from me.Shes my best friend and my everything.I need help or advise how to take care of her to the best of my ability and give everything to make life easier for her.How do I help my love of my life? If anyone knows leave me a comment I will be so so very grateful.
Hi, I am sorry to see no-one has replied to our post.
Sometimes, this board can be quiet and I think perhaps, some carers are so tired from their caring duties, that they dont have time to come here too often.
The last few sentences of your post touched me…how can I help the love of my life…very poignant.
It does sound like your gf`s ms has progressed very quickly. This is sad, especially as you have a young daughter.
My hubby is my carer. he is very good at making my meals, doing the shopping, seeing to the laundry and other household tasks. I can only do a little light housework on the days I feel able too.
But the thing he cant do is, sit down beside me, put his arm around me and say How are you today love? I would love him to do this and I know he loves me very much, it would be nice to have him do this.
He just isnt an emotional person and avoids talking about them. We`ve been married 42 years, so summat is working, eh?
If you show your gf how much you love her, I`m sure this would be appreciated.
luv Pollx
Hi,
I cared for my mother and father-in-laws for a long time, unfortunatley they both passed away this year (not ms related). It is one of the most physically and emotionally draining things you could ever do for someone, but by far the most rewarding job there is.
It’s soooo hard to watch the people you care for decline so quickly it almost feels like your not making a difference, but trust me you really really are!!! You are doing your very best for her and thats enough, you become an expert at medications and how to do things the way she wants them. I’m now on the otherside of that relationship with my husband, he takes carer of me, and it’s sooo hard to let him, but i’m so greatfull to him for what he does cause I wouldn’t want anyone else to, especially when it comes to personal care.
Right now to the nitty gritty, have you got support in the way of money, and aids and adaptations ect… Do you have someone to give you a break? You need a couple of hours to yourself at least once a week for sanity’s sake!
I’m sure there are a lot more carer’s on here who can give you some fab advice, all I can do is tell you how I feel about it.
Take care
Jo xxx
Theres no magic answer, just be there for her ,my brother once asked me" how do i cope?" to which to i said" you just do", he then asked me" but there must be days when you dont" ,i said "on those days i just look like im coping" , she cant take days off from feeling crap , shes still the woman you love s just slightly broken as my wife says.
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Hi Tigermoon
My name is Dave and my wife has had MS since 2005.
I know exactly you feel. It took me a little time to get my head round her d/x. My wife’'s symptoms get worse when she is hot or stressed so I try my best to keep her away from stressful situation and am in control of fans in the house lol!!
She tells regularly that laughter keeps her strong. I know it is hard but a smile can go a long way.
Like Harvey has said she is still the woman that you love but just needs you that bit more than she would have done before diagnosis.
You sound like a nice chap and I really hope you have a long happy life together.
PM me if you want to for a chat.
Take care
Dave
Hi Tigermoon,
I cared for my Gf/wife for the last five years until she passed away this year. her MS had confined her to bed, we had the help of district nurses and carer’s who would help us 3 times a day so we managed to cope but the rest of the time its down to you.
With our care package we had meetings with support, nurses and doctors and because her condition had changed so much in the space of the 10 years since diagnosed I think we got full help as it was kind of classed as end of life, Erica carried on for the 5 more years.
Plus learn to watch out for little changes, this comes from just being there and helping her. our main problem was UTi’s which is a very serious condition which gave her what the doctor called MS fits, this in the end was our problem.
You and your GF share a special bond, love comes in all different ways, be there for her, sit and hold hands make her laugh and a smile means so much plus talk. the one thing I missed was her voice after the first UTI 4 years ago she lost her voice and and it affected her swallowing. which brings on a whole lot more of things to do.
For you - look after yourself, get time for yourself. but the biggest thing I can say is never be afraid to ask loads of questions I.E. Doctors, Nurses, care support workers get as much help as possible.
take care
Clive
Hello Clive.
Your post touched me. I am so sorry for your loss.
It is kind of you to reach out and offer advice and support to Tigerman.
I am wondering if he will read it, as his post was from 2013.
Hope you`re ok.
luv POllx
oh I never noticed the date. thanks
I have found this year very difficult, so it’s been take each day as it comes.
Hi Clive…
My mum hasn’t spoken since 2009…
I miss her voice to and am forgetting how she sounded. Its heartbreaking- MS is evil xx
Hi my girlfriend has con genitive MS which Affects her brain more than disables her physically. Sometimes she can send horrible texts to me and of course I find it upsetting. When we meet up a few days later she can be as loving asever is this normal with this type of MS? When she does send these texts I find them upsetting so I retaliate and that upsets her then we are both sorry. She is the love of my life as she makes me so happy i never stop laughing with her when we meet up especially if its been a week since we saw each other. She can talk such nonsense but I just find it funny and we both end up laughing our heads off!! We have a very big age difference and her family say why dont you find someone of your own age? My family say why dont you find someone who is not ill. We have been going out for a year now and our feelings just get stronger all the time. She has had a single life of 44 years with mam and dad - I am her longest male friend. I do find I have to be very patient with her but its worth it always to have her company and the fun. I find in our little Irish town where we both live people come up to me and say its wonderful that you have befriended her as she has spent many years just wondering around on her own with no real friends to talk to. I tell them it is the pleasure of my life to spend time with her.
Hello
There are a few different issues in your post. I’ll try to see if I can help you to sort them out. Apologies if I’ve misunderstood anything.
First of all, there is no such thing as congenitive MS. I assume what you mean is that she has MS that is directly inherited from a parent. Again, that doesn’t exactly exist. No one knows why people get MS. Genetics can be a contributing factor, but it’s not as simple as Mum has it so I will get it. There is just a slightly more likely chance of me getting MS if Mum has it. Many other factors are involved (including environment, possibly exposure to a virus, diet, gender, a million other things), and the doctors and scientists just don’t know what precisely causes MS, who will and who won’t get it, nor exactly what form MS will take with any specific individual.
Then there’s what you’ve described about your girlfriends horrible texts to you. The fact is that many people have cognitive problems with MS. This can manifest as anger, memory trouble, inability to concentrate or do more than one thing at a time, or a whole host of other problems. Have a look at Thinking and memory problems | MS Trust There is also https://www.mssociety.org.uk/about-ms/signs-and-symptoms/mental-health/other-mood-and-behaviour-changes Some of the information in these two webpages might help you to understand what is happening. It may be that she could get some help for her emotional behaviour. If there is a gentle way to suggest she talks to her GP or neurologist about these issues, she might get some help. Or at least some understanding of what is happening and why.
The next thing you’ve mentioned is the age gap. I’m not sure if that means she is much older than you or the reverse. Depending on what age you each are, it may be that some of the questions you are asked are reasonable. Her family want her to have a partner of the same age, is that because you are much older or much younger? Either way, so long as you are both over the age of consent, and are both happy with the age gap, then it shouldn’t really be anyone else’s business who you go out with.
And your family want you to be with someone who is not ill. The answer to that is of course that if you meet someone who is not ill today, that doesn’t mean they won’t develop an illness or disability later. Equally, you could meet someone healthy, then develop an illness yourself. Would your family want that girlfriend to leave you because you’re not healthy?
I hope you find some answers to the questions you have. If you want more insight into your girlfriends MS, have a look at the ‘About MS’ section of this website. And I do hope you and your girl remain happy together.
Sue
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I just noticed the mention of heat!
I would suggest that you try and keep your partner out of heat, as in the summer, or places where your partners body temperature can rise. For example, a beautiful warm spring day might bring on another exacerbation because your partners body temp maybe susceptible to heat. My wife loved the sun but spring and summer could bring on an attack because her body temp would not properly regulate because of the myelin deterioration.
For some people, cold or cool weather may require your partner to wear more clothing or scarves to keep warm.
Each person symptoms are unique to them. Just proceed with caution and see what your partner needs.
Hi,
My husband has MS and we are both at the age where we are thinking about the future and retirement, and we also want to try to plan ahead so that we can cater for any MS related needs he might have in the future. Does anyone know of any charities/finance companies that can offer help/advice with planning for the future financially and practically for someone with a disability/degenerative condition please? I don’t even if know if there is such a thing.Thanks a lot.
Hi anon, you`ve tagged on to an old post. Might get more replies if you re-post as a new thread. Try Age Concern for advice x Boudsxx