Anyone else grow up with a disabled parent?

[Forestmumlondon]

My Mum had it, she died last year early 70s from complications from the MS.

I loved my mum and we were fairly close but I feel like I never came to terms with the fact she was disabled (she was my whole life obviously getting progressively worse). Other people I hear of with a disabled parent say it made them kind / patient / caring etc.

I feel like with me it went the opposite way! I got frustrated with her, impatient, not always kind, embarrassed when we were out and a fuss was made regarding accessibility stuff / people looking etc, things became increasingly difficult when out, she often didn't keep up with conversations (I assume brain fog, fatigue, tablets didn't help this).

Interested to hear what others experiences of having a parent with MS (or similar) have been.
I have no siblings (again, mainly because my mum didn't think she'd be able to cope because of her health) so I just have no other perspectives. I feel like it's made me think I'm a horrible person.

Well this resonates with me hugely.

My dad was disabled my whole life. Our relationship was not good as I resented the fact he was a burden on my mum.

I also think it has made me too soft and considerate to others though.

I took a long while to grieve for my dad passing as I felt so guilty. I am an only child too.

Could you talk it over with Cruse?

Yes, I feel like a lot of the attention was on her lots of the time, and especially in the later years, when my dad was essentially her carer.

Since she's been gone he's been around a lot more to help me out (I'm a single parent), we've been able to do trips / take my daughter out for days which we either wouldn't have been able to or would have been a lot more tricky.

It's definitely a mixed bag of emotions. She was wonderful in many many ways and very loving.

I don't think there's much help out there for children growing up with disabled parents, at least not when I was younger!

My first mother in law had MS. Terrible disease.

Yes I used to feel embarrassed if we were out and dad needed extra attention.

Nobody else has ever been in my position either so you just carry the conflicting feelings inwardly don't you.

Feel free to send me a private message if it helps. It is too personal to put too much stuff out on the net for me.

Yes and the guilt!

Never met a soul who got it. I am now 61!
My dad died when I was 30. My mum 40.

At least I have ds. Hope you message.

My mum had MS and also died due to complications caused by MS last year. She was 65.
I did a lot for her when I was younger but it was just life and I never felt that I had a rough deal. I think part of the reason I have taken her death so hard is because we had a relationship where I took care of her, although I didn’t live near, so I find it hard to get past how much she struggled at the end.

I think I was pretty patient and caring but yes, I got frustrated at times. Massive guilt now, even though she was massively affected by the MS and had carers do everything for her, I never thought she would die as young as she did and I am so sad for what she’s missing.

I'm a disabled parent and I worry about now it affects my two children who are currently 6 and 4.
All I can say is I know I have huge guilt about needing accessibility considerations and I feel they may be embarrassed about me using walking aids at a young age (I'm 29). However I know me and DH do everything in our power to make the differences in our lives fun. For example, kids know mummy needs to rest when in bed, but they also know they can come and sit calmly on my bed and chat to me which has led to some lovely calm conversations with them. We also make jokes about being able to afford days out because mummy gets a career ticket for free!
I can only sure you that your disabled parents have felt immensely guilty for something out of their control that's affected your life so much. Be kind to yourself but also kind to your late parents, they aren't here to explain why they did certain things or how they felt about it

So sorry for your loss. Yes I feel like no one prepares you for the fact they might die youngish. I was always told MS doesn't really affect your life expectancy. And because she always had it we didn't really fully realise how bad it had gotten as it just gets gradually worse with time. If someone had said 'this is now end stage MS' or something I think I'd have made an effort to spend more time with her.

We had a tricky relationship at times, which I guess may have been the case with or without the MS. I'm just surprised I genuinely never got over the anger that she couldn't look after me the way I would hope for (ie. Towards the end little things like not being able to make me a cup of tea) and took a lot of my dad's attention.

@Adhdmum2
My dad is still here. My mum used to tell me all the time she wished she could do more to help. We also made the best of it (the free carer tickets are awesome!) and had little jokes about stuff. It definitely could have been worse.

Yes I know she would have felt guilty - and that makes me feel even worse!

I loved her so much exactly as she was so pleased don't think your kids won't as well. Like you say there are good things too like having more time for calm conversations etc.

I wasn't really sure where to post this - there doesn't seem to be much out there for children with disabled parents.. or much written from their perspective

In England there's Young Carers. Most areas seem to have a group and often there's a Young Carers group at school. They offer support and activities for children who have someone with a disability in their family.

I wish there had been something like that when I was a child. My dad had MS and I also found it very difficult. We were just supposed to get on with things then.

Ds has grown up with 2 disabled parents. A month before he was born his dad was diagnosed with MS. 6 months after he was born I was diagnosed with Fibromyalgia. His Dad once they found the right drug combination was quite able for the first 6 years of ds life, but then had a massive attack which within 2 years left him permanently in a wheelchair needing carers 4 times a day, by then we were divorced. I was also diagnosed with ME when he was 9 & have since been diagnosed with peripheral neuropathy which has left me struggling to walk. Ds has been a carer since he was 8 years old, first for his dad & for the past 5 years for me, he is 21 now, married & at university but continues to manage caring along with his studies, he has never known any different. I'm just grateful for everything he does for me, his dad is as well. He is a massive advocate for young carers, has appeared on television several times starting from the pandemic speaking about his experience as a young carer, he has also been a speaker at a national carer's conference where he spoke in front of over 4000 people & is a trustee for Sheffield Young Carers charity who have supported him & thousands of other young carers by giving them a break from caring, taking them on activities, trips, short breaks & supported the families of youg carers.

I think I fell between the gap of young carer territory, and child with healthy parent.. I always saw young carer portrayed as someone who did lots of practical stuff for the parent - that wasn't me at all she had hired help, and a husband.

Also as an adult with disabled parent I haven't seen any groups or anything and not much online (for instance there is no category on Mumsnet for it - not saying there should be but still)

@Lindy2 have you met many other with parents with MS? It's so tough, sorry to hear your dad had it too.

@Nat6999 he sounds incredible, and you're lucky to have each other :-)

I'm sure there are some things I've learnt from it - when out and about I'll always try and go out of my way to help people with mobility issues (not because I'm kinder than others particularly, I think more than I understand the challenges and have more heightened awareness / more likely to notice them!)

Eh gosh I could write the same for me,hubby and our 4 kids. Never in a million years thought my life would change from active to struggle but we do the same, they will come sit with me in bed and chat or read etc, they know when I really do need a rest and go with daddy to have fun. I used to feel bad and guilty but hubby and I decided let's make the best of a bad new situation and ye we have laughs, new fun ways of doing things etc and happy kids

In the 1980s in London there were very active MS groups that people could go to with their carers/family members. I went a few times but many had it worse. Wheelchairs etc.

My 1st mother in law died age 68. Quite young really.

I expect they still hold those groups. You could meet some interesting people too.

My dad was a stroke survivor. He had a stroke when my mum was pregnant with me. It still affected me a lot.

@Augustus40 yes my mum said the same thing, she avoided groups like that, or even making friends with people with MS. Because often they were a lot worse than her and I guess it would have made her feel worse. Also she didn't want to just talk about MS she had friends already with similar interests to her (nothing to do with health!).

Not sure what I'm looking for really but it's interesting to hear from others who have been in a similar situation and don't necessarily relate to the saintly young carer persona which seems to be all is shown on TV or written about.

@Boxachocs
Oh wow lots of that resonates with me. My dad could also be a bit impatient with her and in the end got used to making all the decisions, but generally was very good with her.

They used to be very ahead of the game in terms of adaptations they got a lift installed and bathroom done when she had a relapse once and they realised they might need them in the future. But the last 5 years or so it's like my dad was in denial (that she couldn't walk/they couldn't carry on doing what they usually did/that she might not live much longer) he took her out lots which I think she did enjoy, but deffo towards the end I think she would have preferred to be at home in a nice comfy chair a lot of the time, spending time with her grandchild.

Yes I know what you mean, if it had been an accident, or cancer diagnosis then I think we would have kicked into gear and started preparing for the worst / spending more time together/ getting more help. The getting worse gradually thing is really hard, like the frog in hot water, you don't realise it's boiling before it's too late! And there's generally no one point where you come to terms with things you can't do anymore.

My Mum has had MS for 40 years and is now mostly bedbound and hasnt walked for 18 years
Mum is everyones hero as she is a inspiration to all that meet her and we have a close relationship
However i feel resentment because our life isnt like other Mother and daughters
I imagine how things could of been,simple things like going for lunch the theatre,mother and daughter spa days ect. Instead especially now my Dad has passed her life revolves around carers and districk nurses, bypassing catheters stoma issues the list is endless
It changes our relationship and its sad