Did your mother have a disability or terminal illness when you were growing up?

[Snozwanger]

Looking for people to share my experience with really...

My mother was diagnosed with motor neurone disease when I was 4 and she died when I was 9. Now I'm a parent of two children myself I often wonder how my experiences in childhood affected me and in turn affect how I parent now.

I've never really talked to my dad about how it affected him and mum, whether things were difficult financially or whether it was hard to do everyday stuff with mum being ill. I do know that I never had a birthday party until after she died and that dad said it would've been too difficult. I often wonder why some things happened and whether things might've been different if she was well.

What were your experiences growing up and have you talked to your dad about how things were?

My mum did, and still does, have a chronic illness. The main one for me is just being more independent - having to make dinner for myself and my sister from a relatively young age when mum was too ill, being looked after by grandparents at times rather than her, not being able to do certain things because her illness meant she couldn't be take part. I think there's a bit of me that resents that even though I was well loved and supported - she was great at listening to my flute practice and helping with homework throughout my studies for example.

As a parent now I'm just very conscious of giving my kids opportunities and staying fit and healthy for them.

Thanks @Disappointedkoala My sister and I used to have to help wash my mum in the morning while dad got ready. I don't remember feeling at all annoyed about doing it but I do feel sad that we had to help in that way.
Mum gave up work and I don't think she could drive so I think dad probably did most of the shopping and taking us to school. I wonder if mum missed out on the school run chat and making friends with people (I never had friends over and wonder if she might've helped my socialisation more if she could). I was a shy child and have struggled with my social skills throughout my adult life and wonder if things might've been different.

Yes, I was a pretty shy child and I think it's hard when you haven't got that mum at the school gate to help facilitate (though that's obviously a changed situation now with more mum's working full time then they did in my small town in 80s/90s). I remember my friends mum's all did an exercise class together and obviously mine didn't - I think there's a sense of isolation which can be hard, and like you I was a shy child. Since having DD I just have to force myself to get out there and talk to other parents at activities or the park which sometimes feels very alien to me!

Yes I definitely have to make a conscious decision to talk to other mums. Lockdown has forced me to reflect a lot on how I am and I definitely feel like I need to change myself somehow as I think I unintentionally isolate myself from others. When lockdown eased in July I realised that I didn't actually have anyone I could meet up with and that was a harsh reality to face.

Thanks for replying @teaandcustardcreamsx it seems there is a theme of shyness here. I've never managed to work out if mine came before my mum's illness or whether the struggle of her illness somehow meant I didn't get chance to gain confidence. It is a true hang up of mine which perhaps I should just try to overcome rather than lay blame for it. Still puzzling through this all 31 years later.

A little bit different here in that I was older. Mum had cancer twice but recovered throughout my childhood, she then got it a third time and passed away within 6 months of diagnosis when I was 13. I don’t remember how the first two illnesses and her undergoing treatment impacted me, in fact I don’t remember very much of being a child at all. Something that really concerns me and I think is a protective mechanism to I darent go digging.

Her passing away however and the resulting dynamic between the teenage me and a very emotional DF and my brother being away at uni has made me fiercely independent. I felt I couldn’t show emotion as it made me ‘weak’ and I couldn’t as dad was doing enough crying for the both of us. I did my own laundry and often cooking and just generally painted on a happy face and got on with it. I’m far from shy in difference to you, in fact I appear to have learnt that if I want anything from life I have to do it myself. It has its benefits don’t get me wrong but is at the same time my greatest weakness. I have unrelenting standards for both myself and others, although I have largely learnt to appreciate others viewpoints/ circumstances and can ease off on others. The pressure I put on myself though is ridiculous as is the absolute need for control and organisation/ planning. The worst part is my apparent complete inability to ask for help which incidentally is extremely rarely offered as I am adept at putting on a front of being ‘fine’ and only rarely letting people close enough to realise I’m sometimes not. Only dh has seen me have complete meltdowns when I’ve pushed it too far in correlation with stressful life events- wedding planning and postnatally.

I don’t know if that’s what you were meaning OP!

Sorry I missed some of what you asked. Have I talked to dad? No. And I never will, as mentioned he is an extremely emotional type and it would break him to know how utterly unhappy I was and that I felt I had to look after him.

As a parent myself now interestingly those unrelenting standards I mentioned don’t translate to my kids. I want them to be the best they can be don’t get me wrong but not in the way I pressurise myself. It’s more important to me that they know every single day that they are loved, safe and happy and i focus on that. It sometimes terrifies me the thought of them being left behind in the same way I was if something was to happen to me- does that worry you OP?

My mother developed cancer when I was 10 and died shortly afterwards. When she was alive, I was a confident, verging on bossy child. That changed overnight when she died. I have never regained any real or lasting self confidence and I often wonder what my life would have been like had I managed to retain that personality/character.

Like other posters I became independent and very self sufficient early on and rarely do I let people help me. And while people have said they see me as detached, calm and on top of things, I can occasionally be floored emotionally and devastated by the most minor of comments or events which would not elicit that type of over reaction in someone who was genuinely emotionally robust.

I strongly recommend reading Motherless Mothers by Hope Edelman. My mother died of cancer when I was 7 and it's hugely affected me throughout my life and especially through my pregnancy.

@TheYellowOne I can identify with everything you've written

My experience is a little different so hope I'm ok posting. My mum had bad depression and agoraphobia. It started when I was around 8 and it massively effected my school years. She tried to commit suicide when I was just taking my GCSEs. I think it did effect my personality I like to think I was a happy child before that but it made me withdrawn and shy. I would worry friends would ask me about her and I wouldn't know what to say. She used to do things like lock herself in a cupboard if my friends were around. She never came to any school activities like plays or parents evening. She would lash out and push me away if I wanted a cuddle. It made me less tactile as a person and I had to really work hard to show affection to boyfriends.
Thankfully she's ok now and rarely has an off day, I feel like I still hold a little resentment towards her even though I shouldn't as it wasn't her fault she was ill.

@roarfeckingroarr it's so difficult, isn't it. And I'll definitely read Motherless Mothers, it looks like a good resource.

@Ibizababyy Thanks for your reply. Although our personalities might be different I do have some similarities with your experience in that I have hardly any memories of my childhood with my mum specifically. Only a couple of occasions like when she couldn't breathe and I was too scared to call the doctor. I only seem to remember the bad parts and am unsure why. I do wonder if I was subconsciously affected and so have blocked stuff out.
I don't worry about my death affecting them although of course it's a concern. I do worry about losing my dad the most and often imagine something happening to DH. The initial fear of Covid brought that all into focus again but it's mostly passed now.
It's very helpful to hear your experiences. Thanks everyone.

I mean I wasn't a child, I was 21. But I did lose my mum to cancer and watched her deteriorate and sadly pass away.

I was however 11 at the first diagnosis. She had breast cancer. She recovered but when I was 17 then was diagnosed with secondary bone and liver cancer which ultimately was terminal.

Now I have my own baby (3 months old) I miss her even more so and in different ways than I did before. I'm so sad she didn't get to be with me when he was born, and sad that she won't see him grow. He would be her first grandchild. And she was 52 when she passed away.

I think it hits different after you have children even though she passed 5 years ago.

Thinking of you op, it's hard 💙

@TheYellowOne I can definitely relate to feeling emotionally fragile. Any minor setback just seems to floor me and it takes me a long time to recover.

@roarfeckingroarr Thanks for the book recommendation. I'll definitely give that a read.

@lobster12 That sounds extremely hard for you. I just can't imagine how you dealt with depression at that age. I don't think I could've fully understood it. I'm glad to hear she is better now and that hopefully you are having a better relationship with her. I know your experience is slightly different but is very similar. I have a good friend who didn't lose her mum but her mum is bipolar and it affected their relationship immensely. We both feel we shared similar difficulties in childhood.

Yeah, My mother was profoundly disabled from when I was a baby to when she died when I was 40.

The last decade I basically took care of her full time as my Dad was very elderly and worn out from 40 years of being a Carer. So I was his carer too for the last few years.

I dont remember a time when I wasn't a carer. I bathed and dressed and fetched and carried and did housework from an early age. I didn't resent it in younger years but by teenage years.....it hit hard. I became aware of how much freedom my friends had in comparison. I always had to be home, could never go far as there were always chores to be done.

Leaving the country was a no-no when I became an adult. I worked away during the week but spent most weekends cooking and cleaning for them.

There were a host of medical interventions I had to do from an early age too, which may be too outing but they were nurse level and I was doing them by 14. No choice.

My life was very different and it did affect me mentally. I aged early. I had duties and responsibilities that my friends really didn't know about (you're not going to talk to your mates about changing your mums nappy or cutting her toenails). So I felt like I very much had a public facade. Not surprisingly, I suffered from depression from an early age, which I couldn't tell my parents about obviously, as they were the ones what needed care. My job was to hide anything that might cause them additional stress.

So to cut an endless story short, by the time they died I was a Carer Zombie.

But they died when I was relatively young and that was my lifesaver as freedom spread out in front of me. I had babies in quick succession.

On the one hand, it has made me stricter with my kids in the sense that I know chores small kids can do easily, and make them do it. If I could do my laundry by 13 then my kids will too. I would be extremely practical about house jobs. I have little patience for able bodied people whinging about not being able to do something easy. I also am very hot on fetching for themselves, tidying up after themselves etc.

On the other hand I am also very big on child mental health. Mine was ignored, of course it was generational too. And naturally we are always thinking about retirement and how to fund it and make it practical in living terms so the burden is low for the kids.

I have had counselling and that helped a lot! I do consider myself lucky in some ways - my parents were loving and not abusive and were kind to each other and taught me good relationship models. And were cuddly parents, believe it or not! And we were as close as close (and co-dependant!) can be. So there were pros as well as so many cons.

@ElspethFlashman That sounds so, so hard. I can't imagine how you got through it all but you did and it sounds like it taught you a lot.

So sorry you lost your mum so young to mnd, it’s such a cruel disease.

I haven’t lost a parent to an illness, but I was diagnosed with Multiple Sclerosis completely out of the blue, when my DS’ were just 7 & 9. It was a really tough time for us as a family.

Life changed a lot, the boys are really understanding & helpful and know so much about Transverse Myelitis & MS.

I used to feel so guilty if we had arranged to go out and I just knew I couldn’t do it that day, they never complained.

It’s not the life I would have choose for me, my DH or kids, but unfortunately it is what it is and can’t be changed. I am a very positive person & can adapt & overcome most situations, it’s very rare I feel sorry for myself, as this will only affect those around me and causes them to worry. But it’s not easy.

Like other posters I became independent and very self sufficient early on and rarely do I let people help me. And while people have said they see me as detached, calm and on top of things, I can occasionally be floored emotionally and devastated by the most minor of comments or events which would not elicit that type of over reaction in someone who was genuinely emotionally robust.

@TheYellowOne this rang so true! My mum was unwell and in and out of hospital through my childhood, my dad dealt with it by coming a workaholic and my sister by truanting and playing up, so I ended up being the 'good one' / mummy's little helper.

When stbxh moved away, leaving me in sole charge of 3 kids, I felt like people were almost a bit repelled/less keen to help because I was so calm, I heard a lot of 'don't worry, you don't have to be superwoman'. However I truly was very unhappy and absolutely exhausted, just really struggle to acknowledge emotions even to myself let alone others, and instead just keep on doing jobs, doing caring etc (it's also, I think, why I am drawn to people who need rescuing).

This is me. My mother had a progressive illness (MS) so deteriorated throughout my childhood to the point she needed help with everything - washing, toileting, moving her hands and feet if uncomfortable, being fed etc. She died just as I left school.

I used to fear children at school finding out and that I would be mocked, bullied or (the worst) pitied for it. It is only as I became an adult that I have been able to tell people that she had this illness.

My dad left when I was 13 and my sibling was 10 as caring became too much for him. So it was left to his two children . This leaves me with an abiding belief that, if I ever became ill, whatever DP/DH I had would leave me too. When I see stories of husbands nursing wives through cancer, dementia etc. right to the end I have so much admiration.

To your last question, OP, I have in adulthood spoken to my dad about his experiences as a carer and I understand how hard his life was, and what he believed would happen when he left - but I still struggle to understand leaving your children in that position.

The experience has made me very independent, though. I could cook, wash, clean, knew what to do about bills and sorting things in house from a young age. @ElspethFlashman - I recognise what you are saying about able bodied people not doing things themselves: I have little patience for grown, able bodied and mentally well adults who can't do their own cooking and chores. I also appreciate that life can really throw you a curveball, so make the most of it whilst you are well and able.

Much love to everyone on this thread. It's a tough hand we were dealt.

Yes the idea that life doesn't care about your plans looms large to this day.

Just Friday gone, we were choosing a new front door for our house. The salesman asked if we wanted it dropped for wheelchair access or not. I immediately said yes, even though my mother is dead 5 years and I don't know another person in a wheelchair. I was thinking about myself or DH potentially needing it, even though we are fit and healthy and possibly decades off needing any mobility aids.

The "Be Prepared For The Worst" conditioning never leaves you.

I would never buy a house with a lot of steps up to the front door, or no room on the ground floor that could be converted into a bedroom. Never ever.

@roarfeckingroarr I just wanted to take the time to come back and thank you for recommending Motherless Mothers by Hope Edelman. I'm over halfway through it now and so much of it rings true to me. It's made me realise that there are so many points in my own children's lives where I will revisit times i struggled as a child myself. Reading other motherless mother's experiences in the book has helped me to understand why I often feel the way I do and has brought me a bit more clarity. I'd definitely recommend it to others.