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My Dad's had MS all my life. Want to talk to others with parents who have MS

Hi there

My names David, I live in Bradford, I’m 32 years old and my dad has had MS pretty much all of my life. Which has been a right sh*t sandwich to say the least!

I wanted to start this thread to meet other people who are in a similar situation to me. I’ve never actually spoken to or met someone who has had a similar experience.

I don’t want to go into too much detail here but i would like to talk to other people in the same situation.

I’ve found it really hard growing up, and it is still a stuggle at times now. My Dad struggles to walk and finds day to day tasks hard. I’ve just got in touch with social services and the MS Nurses at St Lukes to see what extra help is available for him as i’m worried that he’ll need more help in the future as he’s been getting slowly worse in the last 2 / 3 years.

I work full time and i live about 45 minutes walk from his house and find the whole thing stressful!

If anyone wants to chat feel free to send me a message or reply to this thread…

Cheers!

Hi david, As your post is quite old not sure if you’ll see this but thought as you didn’t have any replies you might like this one. I’m 30 and my mum has had secondary progressive ms ever since I can remember. I’ve never really been all that affected by it until recently when the going has gotten very rough. If you want to speak more sbout the emotions that go with having a parent with ms message me back :slight_smile:

Hi seen this post is from a while back but thought i’d jump in, im 17 and my mum was diagnosed with primary progressive around 9 years ago, my dad left when i was 7 so its just us in the house, my mum has now nearly completely lost the ability to walk and needs pretty much 24 hour care, i understand how it feels man so if your up for a chat get at me.

My mum has also had MS all my life. When I was very young she had relapsing remitting but when I was about 6, it turned into secondary progressive. I’m now 30 and I live with my mum and take care of her. She doesn’t need full-time care but it is still a big job and I find it very tough sometimes.

My mum has a lot of physical symptoms but I find them quite easy to deal with. But she also has very severe cognitive problems (well, they feel severe to me but the healthcare professionals don’t seem to take them seriously) and I find that the cognitive issues make life such a struggle.

Anyway, just wanted to let you know that you’re not alone!

Hello, My mum’s had MS for nearly 20 years. I’m 30 and for as long as I can remember I’ve been caring for her. It’s so hard and very lonely. It’s nice to read that there are others out there who are caring for apart t. I always felt I was the only person out there too are for my mum. Feel a bit overwhelmed by it all at the moment.

my dad was diagnosed January 2011 after having subrachnoied haemorrhage in June 2010 I’ve been his carer since. June this year he had his first major relapse and can no longer walk unaided nor does he have any feeling in his arms, to say things are hard is an understatement as I to am now under the neurologist as my doctor thinks I may have it to just waiting on my mri results :-/

Sue28 My heart goes out to you. Life is an arse sometimes it really is, I shouldn’t swear I know but what the hell I’m grown up. Wishing you all the best C x

swearing gets the point across better I think :slight_smile: its actually a relief to find this site even tho I don’t comment often it actually helps just reading about other people, and knowing I’m not the only person in this situation.

Hi,

I’m 19 years old and am one of the main carers for my mum. She is now 45 and has had MS for around 20 years. For a long time she was relapse and remitting but after having my younger brother (9 years ago), everything has gone down hill. Me being the oldest has taken on all the responsibilities. My dad left my mum 10 years ago, still has a lot to do with us and helps a lot but still resent him a little. I also live with my step dad who is a waste of space and used to be abusive towards my mum. Life is sometimes just so hard I often have thoughts to end it all, some days I’m happy and feel positive, others I just want to stay in bed, cry all day and not see/speak to anyone. Obviously in my situation I can’t. DOoes anyone ever resent the person their caring for? Even though you kno what theyre going through is just awful? I hate myself for that but sometimes i do. I just want to be a normal 19 year old girl!

Hi angiebaby123,

I can hear you’re having a really hard time with everything you’ve described. Seeing the changes in your mum’s condition and taking on all the responsibilities sounds so difficult. It also sounds like you have really mixed emotions and we’re here if you’d like to talk things through with someone. We run a Helpline for everyone affected by MS so you can talk about how you are feeling. They can also perhaps provide suggestions of where you might be able to get other types of support.

You can reach them on 0808 800 8000 (Mon to Fri, 9am-9pm) or helpline@mssociety.org.uk.

I hope that helps. All the best,

Eleanor (admin)

In years to come my two children may need people to relate to over their dad they are only 5 and 7 yrs and already my 5 year old tells her school friends.Lets just hope sites like these keep going for a long time, as i find talking to people on here very informative and helpfull and it is great to talk to people who understand what you are going through.xxx julie

Hi, I’m 34 and my Mum was diagnosed with MS when I was 14. They think she had early symptoms (vision problems) 16 years earlier though. By the time I left University Mum could only walk a little and was using a manual wheelchair outside the house. The following year she had an episode where she was totally confused, didn’t recognise me, my Dad or my sister and when she did talk it made no sense. It was like her body was still there but my Mum wasn’t in it. She spent 3 weeks in hospital and her normal personality returned but she didn’t walk again after that. Now she uses a power chair, my dad looks after her full time, which includes turning her over in the middle of the night as she can’t move herself at all. Only one arm and hand, so at least she can usually still feed herself. I sometimes care for Mum to give my Dad a break and sometimes she goes to a respite care home. Last week she was in respite but got an infection, became confused and unhappy so I came back and brought her home. She had also lost weight and hadn’t been sleeping. I don’t think they looked after her well enough and i don’t want her to go there again. But I have a full time job in a different city so I can’t be here every time Dad needs a break, and he does need breaks. Is there an MS specific respite centre where she would get appropriate care? (Mum and dad live in Bristol) Or home MS trained care at home? I also think my Dad needs some support but he doesn’t like to talk about his feelings or ask for help! Any adive would be much appreciated and if anyone (David?) has a similar experience I would love to chat, do PM me. Best wishes, Helen