My mum’s MND diagnosed when I’m 25 weeks pregnant

[RJJM]

Hi,

Messaging purely to get some support or advice from anyone that’s gone or going through anything similar.

Going through a very dark time atm. My mum has recently been diagnosed with MND after 2 years of deterioration and I am 25 weeks pregnant with my second baby (my first has just turned one). We are lucky in that she does not have the fast progressing ALS but this buys us, likely at the rate she’s deteriorating, a couple more years. My heart is broken.

I have already had to mourn the independent, strong, glue of the family, mum I knew and not have her practical support with my first born (emotional support in abundance so I am lucky there). But I am terrified about what lies ahead. I have my first, pregnant with my second, and live hundreds of miles away. I travel to her as often as I can but this is always so much easier said than done whilst working, having my son, being pregnant, my husband working and doing building works to our house.

I am feeling so sad and so overwhelmed and feel like I can’t be the daughter or mother I want to be right now. I find it hard and feel guilty for not being fully present with my son, because I’m so worried and upset about my mum. And I can’t be there for my mum how I would want to be because I live so far away, have my son, am getting more and more pregnant and am working.

She has my dad who is relatively fit and healthy and would do anything for her, so i am lucky that she has such a rock physically with her.

She is my best friend. I can’t imagine life without her and with MND being the horrific disease that it is, I’m terrified about what lies ahead. I cry all the time. About what I’ve already lost, about her sadness, and about what’s coming.

Not sure really what I’m looking for by writing this. But appreciate any words of wisdom or support. Hard to talk about this to people. I sometimes find friends have said stuff along the lines of, ‘well at least you have your baby coming, that’s positive’. That doesn’t make me feel better. I just want my mum.

Thanks everyone.

I'm so sorry to hear this, MND is a dreadful disease. We lost my brother in law last year to it, he was only 38 with two little kids. I don't really have any words of wisdom for you, just a virtual hand hold.

Handhold from me too. I lost my Dad.
Just try to enjoy the small pleasures in each day.
💐

I'm so sorry.
Just be there for her - even at a distance - as much as you can be.
Is there any chance you can take some time off work to be with her as things progress? It may not be at all possible I know, but it is doable for some and might be something to consider.

My mum had it too. I regret all the time I spent trying to organise things (doc appointments and so on). I just wish I could have sat and been with her more. She was very sad too.

@alwayscrashinginthesamecar1 Thank you for your kind reply. I’m so sorry to hear of your brother in law. Heartbreaking. Sending my best to your sister and her kiddos.

@Pinkpinkplonk Thank you for your reply, I appreciate it. So sorry you lost your dad - trying to appreciate and enjoy the little things is good advice - might help me have moments of staying present. Thank you.

I am so sorry OP, you must be heartbroken. MND is a very cruel disease. I am sure the new baby will bring your mum, a lot of joy, and a very welcome distraction for you too. Wishing you all the very best

I’m so sorry you’re going through this. My Dad had MND when my kids were little. I’m from Aus but was living in the Netherlands. I had to do Many frantic cross-planetary flights to see him. It’s a hard road ahead for your family, but you’re not going to be pregnant forever and your babies will bring her so much joy.

@Beccasmomma Thank you for taking the time to read my long message and reply. I appreciate it.
So sorry to hear you had to go through what you did and losing your poor mum. It’s really heartbreaking.
Trying to support on the physical side of things is one thing, and my brother and dad are quite good at being practical about their support, but she is emotionally and mentally struggling and she tries very hard to hide this side. I call her every day and we speak for a couple of hours. We video call so I can show her my son, and just include her in silly things like me cooking dinner! But I never feel what I’m doing is enough. I think she deserves better from me but life is complicated and if I could drop everything and be by her side all the time, I would. But I hear what you say and know that just being there in whatever and however frequent a capacity I can be, is what’s important.
Thank you again for messaging me.

It sounds like you're really helping her. Technology is great. You and your children will bring her a lot of joy. The silly things are the real life things and they help more than you think.

OP I am very sorry you are in this position. First thing - congratulations on your pregnancy and don't worry - you are already being a fantastic mother and daughter, by virtue of the fact you are worried about this.

My mum was also diagnosed with MND when I was pregnant, but with me, my unplanned pregnancy and her diagnosis happened almost simultaneously.

I couldn't understand how to carry on. I was so stressed by how I'd cope with being pg again, taking care of my 3 other children, carrying on working, and being there for her (I also live hundreds of miles away), that I terminated my pg.

It was a very very dark period. My being 'no longer pregnant' allowed me to visit her right up until then end, which wasn't long -just 7 months. She died the week the baby was due. It's hard to process and it has taken me years and years to forgive myself.

You'll find time to see her, and if her condition is more slowly progressing, then she'll get to meet the baby and that thought alone might keep her mood from becoming too bleak. MND is a really awful disease, there's no other way of putting it. My heart goes out to you, it's going to be a difficult period. It might be worth reaching out to MNDA or MND Scotland for support- I found both of them very helpful (loaning of equipment, counselling, advice, etc).

Lost my dad last year, three years after diagnosis. If it's any comfort, my dad carried on right until the end, he was mobile, going out everyday and still very much himself. He didn't have any hospital stays, until the end, so unlike a lot of diseases, he wasn't in and out having invasive treatments. He was just able to carry on much as possible and be with us. He was in discomfort but luckily not pain. MND is a devastating diagnosis but it doesn't mean that you or your mum can't still have a quality of life together. I met some incredible neurologists during my dad's illness who gave me a lot of hope for the future of MND treatment xx

Hi, my partner was diagnosed this year- we thought we were going to an appointment where he would be told he had carpal tunnel or something along those lines. I cannot remember anything from the month he was diagnosed and can only describe it as a pure trauma response. We have two children age 13 and 15 and your OP really resonated with me in that trying to deal with everything you feel like you can’t be the best you can be to everyone in your life. My partner has ALS and since April has lost his arm and hand movements completely and is now nearly wheelchair bound as struggling with his legs. One thing I often consider is that caring for him, the children and trying to keep my job as sole earner of the family keeps me from facing the reality of the situation and what will happen. I think from your post that you are dealing with your feelings and emotions in a much more healthy way than me so don’t beat yourself up about it and I’m sure your mum recognises that you are trying your best. I too have experienced comments from others that highlight lack of understanding of our situation but I think that often comes out when people just don’t know what to say to make it better- the reality is that there is nothing. Please be kind to yourself xxx

I’m so sorry. My dad has MND — he has had it for about four years now but just recently his voice has become essentially incomprehensible and I am struggling with that. I keep having dreams about him talking to me. I also live far away.

My brother has it too, he has two little girls. Our hearts are broken 😞