to have just stormed out of my parents house?

[Callaird]

My mum has Motor Neurone disease. It’s progressing quite quickly. She’s been quite positive up until the weekend before last, which was my brothers wedding, brought forward 18 months so mum could be there and enjoy it. She seemed to have a nice but totally exhausting day.

Now she seems to have given up, won’t eat, just drinks fortified milkshakes and yoghurts. She’s no longer keeping herself clean, she cannot manage the shower herself but dad and I have been helping her in and out and she can do the cleaning and drying bit herself but now she refuses to get out of her chair.

We were supposed to go to a MND Association meet up today but I got there and she is not ready and said she wasn’t going. I asked her why and she said she didn’t want to. And that was that, refused to speak to me. She has Progressive bulbar palsy which means it affects her tongue and throat muscles so she cannot speak, the MNDA have given her a brand new iPad and have put a very expensive speech app on it, she’s getting much better at using it being a complete technophobe, but she refused to explain why she would t go, threw the iPad at me when I put it in her lap and asked her to tell me why.

I left my job and home to come and help her get sorted, I’ve spent hours on the phone, filling in forms, emailing people, chasing things up and reading up about MND. I’ve spent hours cooking and cleaning for them, sorting out the house.

Dad is likely to have some kind of Alzheimer’s or dementia, his memory is terrible and the diagnosis has made it worse, he has had a couple of strokes and has limited use of his right hand and leg so that’s his excuse for the house being a mess. Mum has been unwell for about 18 months and I took quite a lot of time off work to come down for hospital appointments to get some kind of diagnosis but she had a fall in March and broke her hip and one of the orderlies went to speak to the neurologist to have a look at her (the orderly is training to become a nurse!) and we got the formal diagnosis in July, when I came back to help them get the help they need. It’s taking a lot more time than I thought but it’s starting to come together now.

My brother is doing his best, he has a young family, my beautiful niece is about to turn 2 and will not remember my mum if she gives up now! My brother is good at the practical things, fitting rails in the bathroom and outside the front door, sorting dads man cave (shed that has water damage) but he works full time and his wife works when he’s home so he has my niece. He doesn’t have time to sit on calls for over an hour or to go to the appointments.

So I threw a teenage tantrum and told them, that’s fine, you can give up but if you can, so can I and I walked out and now I’m sat on a park bench, trying not to cry (unsuccessfully) and trying to decide where I go from here.

[Etino]

What do you think is going on? With her and thinking about your reaction.

[Hisashiburi]

This sounds really stressful for you. I have seen further hand how devastating the illness can be for both the patient and carer. It just sounds as if it has all gotten too much. She must be scared as must you. No real practical advice but hope you all manage to find a way to cope in the days and weeks ahead

[TheStoic]

You give yourself a break, is where you go from here. Be as kind to yourself as you are to your parents.

Take some time, regroup, then go back IF you want to.

[Jaxtellerswife]

I wish I had practical advice, I'm so sorry you are going through this.

[formerbabe]

No one is being unreasonable...

[SnuggyBuggy]

Give yourself a break I'd you need to. In my experience with relatives in this situation they can be very difficult with family but ok with outside help and it is completely fine for you to defer care if that's what works best.

[Gemini69]

Maybe the Wedding was giving her something to focus on.. what does she have now OP... maybe she feels there is nothing to reach.. look forward to because lets be honest.. it's a very grim path she is treading... I feel your stress but your Mum must be in her own personal despair..

[Steelesauce]

Take some time out, can you get some respite? Unsure if you're in the UK or not but you're mum would qualify for some funding towards respite. It's probably all hitting her now the weddings over and she has got nothing else to keep going for as awful as it sounds. Please, bear with her and look after yourself. You can't pour from an empty cup x

[QuestionableMouse]

It is so so fucking hard. So hard.

I'm in a similar situation and some days it's a struggle to get out of bed because I know the day is going to be endlessly hard.

You need more help. Have you been offered relief carers? Would an assisted living facility be an option? You can get places where they would have their own flat and could live together but would have help and support too.

[Itslookinglikeabeautifulday]

You are a star who has gone above and beyond for your parents. This must be so totally draining for you - and frustrating. So no, not unreasonable in the slightest. xx

[drinkygin]

Oh Callaird my heart is breaking for you reading this. I’m so sorry for you and your family. It sounds enormously stressful for all of you and it’s no wonder you’ve snapped. Don’t give yourself a hard time. Sounds like your mum is struggling emotionally too. Are you receiving any support from any agencies?

[Feefeetrixabelle]

Have you considered getting her professional care. It may seem cruel to have a stranger come in to do such intimate things but it would take the pressure of you and your father.

[LakieLady]

MND is a hideously cruel disease. If her tongue and throat are affected, it could be making it difficult for her to swallow proper food and that may be why she's stopped eating.

I totally get why someone who can no longer speak might not want to go to a social event. It must be absolutely dreadful.

Never mind "giving up", if I was in her shoes, I'd be off to Dignitas while I still had capacity. The only disease that scares me more than MND is Huntington's. If ever I'm diagnosed, the first thing I'm doing is buying an open one-way ticket to Switzerland.

It's tough on you too, but please don't blame her. I understand that your way of dealing with this is to try and get her living as normal a life as possible, but that may well not be what she wants. Try and respect that.

[TurkeyBear]

Your Mum is facing a pretty horrible and slow death. She is dealing with that and trying to process it and is I assume very angry with the world right now. To lose our independence is one thing but to lose it with MND is another thing all together.

Stop trying to 'fix' her and just be there for her. Let her make her own decisions.

[Sethis]

Remember that with terminal illnesses comes a lot of rage, along with all the other negative emotions.

Rage at life, for being so unfair.
Rage at God, for letting this happen (if religious).
Rage at themselves, for being "weak" and falling victim to something stupid like an illness.
Rage at other people, for not suffering the way they are suffering themselves, or not helping enough, or being obnoxiously cheerful, or anything else.

A lot of it stems from a complete lack of control, mixed with fear over the future.

With your brother having had his wedding, and your mother attending, she may well feel like she lacks anything to live for. What does she have to look forward to in the future apart from more suffering? She could well be hoping to die as fast as possible to minimise the suffering of her family, so in a way, she could be thinking that she's doing you a favour.

Really though, it all boils down to the individual and their circumstances. This all sounds terrible and you have all of our sympathies. My only helpful suggestion would be to see if it's possible to have something for your mother to look forward to in the same vein as the wedding, whether that's Christmas, a small holiday, anything that looks like a target for her to reach. In the absence of a target, then it's much easier to give up.

[MrsBertBibby]

Oh love, it sounds like the wedding being over means you are all contemplating the real future, and it's bleak.

Be kind to yourself, lovely.

[BarbarianMum]

be kind to yourself, first and foremost. Get more support w your parents if you can (I know how hard this can be).

It's ok for your mum to have bad days, and for her not to want to be brave and fight back but it will be very hard for you to see this. It's not a matter of "giving up" though - a positive mental attitude can get you only so far.

[blueskiesandforests]

that sounds impossibly hard for all of you Callaird Ranting on here might help, assisted living facility does sound the ideal solution if it's a possibility, although things are never that straight forward in real life are they?

[rainbowquack]

Big hugs. 

[ElspethFlashman]

It sounds like it has come to the point where you need carers in 2 or 3 times a day. It is an inevitable point with MN, I'm afraid. It is very few families who can do it all themselves.

She may be more comfortable with it too, it is shit seeing how stressed you all are and how much time off work you're taking. There is guilt that comes from being cared for by family, especially if she can see your Dad is not great either. Tbh he does not sound like he is able to be a carer and helping people with balance issues shower is no joke.

Lastly, she does have capacity and autonomy. It is HER choice. It is frustrating and scary for you but it is 100% up to her what activities she does and how much she washes whilst she has capacity.

Talk to her about getting a formalised carer structure in place. You don't know till you ask.

[MereDintofPandiculation]

Suggest you go over to the "elderly parents" thread. There's a lot of support over there from people who are going through similar things.

Yes, it's difficult and stressful for you, but nothing as compared with what your mother must be going through. It sounds as if your mother no longer feels she has any quality of life or anything to look forward to, and I can understand why she has given up on taking active steps to prolong her life. I can understand why you stormed out, but no, it wasn't a reasonable reaction, just one of those things we all get driven to when everything's on top of us.

[soapme]

Huge massive hugs to you OP.

[Titsywoo]

Sorry you are going through this and I'm sorry for your Mum too. It's a horrible disease :( Do you all have any emotional support? I'm not sure what's available near you but I volunteer for an organisation that provides emotional support and practical help to people (and to some extent their families) who are dealing with life-threatening or terminal illnesses. It can be a great help to have someone to talk to who is not personally caught up in the emotions and who can listen to fears etc etc. Maybe something to look into?

[RayRayBidet]

YANBU, but neither is your mum.
I'm so sorry this is happening to your mum and I can only try to imagine how you all must feel.
I get that you are frustrated by your mum's attitude but I can't say I blame her. If she doesn't want to go she shouldn't have to. Do you think that really you are stressed, anxious and grieving and that your mum not wanting to go to the meeting is not the end of the world but more the straw that broke the camels back? Ie your meltdown is about everything and not really about this incident?
It's very sad that your niece might not remember your mum but I imagine your mum is upset enough herself about that and it's a bit harsh to remind her of it.
I think you need to calm down, take some time off trying to do so much and go with the flow a bit. Surely your mum and dads wishes are paramount in all this.
Again, I'm so sorry for all of you and I know that nothing I can say is going to make you feel better but I think you need to make the most of your mum and not spend her remaining time angry and resentful at her.
I don't blame you for any of your feelings and I am not trying to say you have consciously done something wrong or anything like that.
I'm so sorry and send you a very large completely un-mumsnetty hug.

[recklessruby]

OP I m so sorry that you're going through this and trying to hold everything together.
MND is so cruel to take away a person's bodily functions but leave a clear mind imprisoned in a failing body.
We watched my beloved auntie die from this 15 years ago. Thankfully she slipped away in the end from pneumonia and was very peaceful in hospital but it's horrible. She was only 59.
Think about getting carers to help you out as it's also a strain on your dad.
Look after yourself too.
I wish I could wave a magic wand and this disease would disappear.