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.

Oh you poor soul. That all sounds so difficult. It is okay to have walked out. You need to give yourself a break. Is it possible to look at getting her into a care facility or get some carers into the house to allow you to make time for yourself?

you are not bu,it's an incredibly hard time for all of you.I'd agree with pm to get some help,relief carers,some help with jobs so that you get some much needed time out.you can't do it alone,not should you.accept as much help as you are offered.none of these replies can ease your pain but please know you are not alone,many of us here are sending you strength and a hug.

I feel so sad for all of you but as someone with 2 progessive conditions, I can understand what may be going on in your mum's mind. She had the wedding to look forward to and now it's gone, there's nothing left to aim for. Just an unknown number of days of decreasing ability until the end comes.

Some days when my illnesses seem to be winning, life seems pointless and the smallest problem magnifies. Last week I had a slight cold and spent a lot of the week in tears and wishing I could die, but knowing how much that would devastate my husband. Today the cold has almost gone and I'm feeling on the hyperactive side of positive and planning a busy week.

Love to you all x

What an awful situation, firstly my thoughts are with you all and I hope between you you can muster enough strength to get through it the best you can. Neither of you are being unreasonable. Not in the slightest! I can never know how I would react in this situation of course but I think what would be helpful would be working on validation and communication. You're mum needs to feel validated, she needs to know that feeling angry/depressed/hopeless is perfectly fine and she is well within her rights to feel them. It is also important that you speak to your mum and tell her how you feel, you many not have the illness but the suffering it causes you is very real. I think I would tell my mum that i love her and want to be supportive and helpful, tell her you will be supportive of her decisions even if you disagree but it would be helpful to you for her to at least try and talk to you about how she's feeling to help you understand and be on the same page. That could possibly help open up conversations? I'm sorry if that sounded a bit bummbled but I couldn't read and run xx

(I had beloved MIL with Parkinsons)

As others have said, YANBU but neither is your poor mum. It's a horrible situation for you all, and the stress of looking after poorly and/or elderly parents can be awful and draining, and it's perfectly natural to be frustrated and angry.

Have you looked into what kind of help you are entitled to/can get?

xx

Never mind "giving up", if I was in her shoes, I'd be off to Dignitas while I still had capacity.
Totally agree. I would save/beg/borrow to take my parents to Dignitas if that is what they wanted. You wouldn't leave a dog in this pain/misery.

Sorry OP.

As everyone else has said, of course you're not being unreasonable. Neither is your mum.

This sucks and I'm so so sorry.

You need the MacMillan nurses and palliative care. It’s not just for cancer. Her GP should organise this. Do go back to your prents as soon as you can, but not before you have had a good cry and a cup of tea.

Hard work and heartbreaking

Get on to Adult Social Care, or Care of Vulnerable Adults (whatever they're called) at the Council and see what they can do.

Call their gp and tell them the reality of what's happening; the gp won't be able to discuss them with you unless your ps have given permission, but that doesn't mean they won't want to hear what you have to say. They may be able to give you specific localised advice too.

You're allowed to get frustrated and have the odd wobbly. When you've had a good cry and feel a bit better, go back.

You can also get help today to prevent hospital admission. So, if she is at risk of falls in the shower etc, there are teams in most areas who can swoop in with social work/OT/physio to sort things out and prevent crisis.

Your GP can make the referral for you today. Phone 111 if you can't get an appointment - but, don't feel like you have to shoulder this alone.

You're not alone. Hundreds of carers have done the same. But that's ok because we get handsomely paid for it.
I have been known to screech ''Just fucking eat'' and some such.
It's crap.
x

MND is the worst disease - your poor Mum is losing her battle and I think she recognises that. Not wanting to go to the meeting was her way of saying that she just doesn't want to keep fighting. The suggestion that she should keep trying is totally unrealistic for her - if the disease has reached her mouth and throat it has progressed very far down the track and you need to be looking at palliative care options for her , rather than expecting her to "keep trying".

I'd get an urgent appointment with your GP , and get some care arranged for both your parents ASAP. And get some help for yourself too - you've been doing the hard yards and you need a break. Hugs to you .

I'm so sorry, this is such a horrible situation. This happens a lot in palliative care, it sounds like she has been holding on for the wedding and now her body is so tired. Please dont see it as giving up, she is getting closer to the end and all of these things are just a natural progression (reduction of food intake, reduction in daily activities). Its maybe time to have a discussion with whoever looks after her (consultant/specialist nurse) and see what they can do to support your family. I'm so sorry but it's also maybe time to think about what she wants as her condition progresses ie. Care at home/hospice/care home.

Please speak to your GP and get some help - you can't carry this alone.

I feel for you both. I don’t blame your mum for feeling frustrated or defeated and I don’t blame you for losing it with her.

If your mum doesn’t want to go to a meet up I think that’s OK. Its probably dispiriting enough being so ill without having to go out and meet other ill people. It’s her decision but it was thoughtless of her to give you a wasted journey though.

I would advocate having a good cry, something to eat and then going back to give your mum a hug. And follow up on the good advice on here about getting help and support for your parents and for yourself.

It's a horrible, cruel disease. I knew a lady with it years ago, she was terrified and took matters into her own hands while she could.

It's awful for you all. Go easy on yourself and have a good cry. Can your Mum still talk? Find out what she wants.

YADNBU - I have to have a little tantrum and a cry quite regularly. We're carers, not saints. If you feel like it would help, pop over and join us on the "caring for elderly parents thread" - rants, gallows humour, advice and hand-holds all in plentiful supply there.

PS You are doing a great job - you are an excellent daughter and sister - make sure you tell yourself that if you can.

I understand you are extremely upset OP and it's a harrowing situation to be in but....
Your mum has absolutely no control over what is happening to her and no amount of intervention from you will change that.

She needs to make her own decisions about what she is able to do and having spent a very physically and emotionally demanding day at her son's wedding it absolutely floors a terminally ill person.

She has probably used mind over matter to get to her son's wedding and has basically exhausted herself to the point of collapse but she is far too ill to even try and explain that to you.

You need to try and stop telling her what she needs to be doing and allow her to rest. You cannot control anything about her situation. Please stop putting pressure on her and yourself over something that neither of you have any control over.

She is probably having yoghurts and fortified drinks because she knows that she cannot manage anything else for fear of choking. This is a major problem for her and I can fully understand her not wanting to eat anything.

You need a lot of extra support right now from people who can help you as pps have already mentioned. You cannot do this all on your own.

Thank you for all your messages. I do know I’m unreasonable!

To answer a few questions.

Mum will not go into assisted living, doesn’t want to pay the £22k a year in services that the places around here want them to pay.

She doesn’t want to waste ‘our’ money on carers when she can still do it herself, but she won’t do it herself. She doesn’t want to die in hospital or the local hospice (which is where the coffee morning is held) and thankfully the hospice offers ‘hospice and home’. But if she loses too much more weight then she will be taken to hospital and be fed intravenously there. The community nurses and palliative care nurses have already told her this.

I know that she doesn’t have to do anything that she doesn’t want to do. However, when I left at 8pm last night she said she would go. I got my niece up at 7am and played with her for an hour before walking the 55 minutes to their house. She has learned how to use the iPad and she could have sent me a message saying that she didn’t want to go (and why!) but she didn’t. When I got there I said let’s get your shoes on and brush your hair, she said no, I said we are going to the coffee morning, she said no, I asked why, she said she didn’t want to so I put the iPad on her knees and asked to tell me why (I’m too tired or I don’t feel up to it would have sufficed) but she picked the iPad up a frissbee’d at me, I told her that is fine if she doesn’t want to go but do not throw your iPad, that’s £800 worth of kit supplied for free from the MNDA and I’m sure there are others out there that have the same needs as you and are not so lucky as you. She turned away from me and closed her eyes. I admit I lost my temper and said that I can’t help you if you won’t help yourself and stomped out.

I totally understand that she is struggling but I’m doing everything I can to help her, not me. I could just move back to London and let my dad sort it all out (but he won’t) we are all struggling too. We talked last week about the things she has to look forward to now the wedding has taken place. It’s my nieces birthday in 10 days and she’s bought her a lot of toys and memory jewellery. Then there’s Christmas where we are having a family Christmas so again she gets to see her granddaughter having a lovely time. Then she said that there will always be something to look forward too and I said that is why everyone carries on, because they have something to live for. If she doesn’t want to live for me or my brother and dad, surely she wants to live for her granddaughter? And she agrees (then went into a rant how things would have been different if I’d had children!! I can’t carry a baby, definitely not for the want of trying! She usually brings this up when she’s drunk!)

I also understand that we all have off days, it’s fine but she cannot just ignore me! Imagine if I was having an off day (which I do a lot) and just didn’t get up and go round and didn’t answer her messages?

I do know it’s shit for her. I do know she hates it. I do know she’s struggling to come to terms with it. We have talked about everything she wants to happen, we have had very honest and frank discussions.

It just makes me mad when she shuts down. I am not coping well. I sleep around 4 hours a night, waking constantly, lots of disturbing dreams (then occasionally I will sleep for 10 hours straight) I have a constant headache, probably from tension and tiredness. Dad is not coping, took him to counselling last week, he asked me to stay, I didn’t want to because he’s old school, stiff upper lip, big boys don’t cry, I thought he wouldn’t be honest if I was there, but he told her a lot and he cried and he said that it was bringing up all the suppressed emotions from when my brother died (35 years ago) when he had to be strong for my mum and his two surviving young children. That was tough to listen to. He does stupid things now, doesn’t listen or doesn’t read the notes I leave him and could be putting mum in danger and so I worry about that too.

I think it’s all come to a head today because last night I cancelled 5 nights away with my best friend in December because she’s having a RIG (feeding tube through the stomach) fitted in 2 weeks and I can’t trust Dad to look after it properly and keep it clean and now I feel I can never go back to work!!!

It sounds like you need more support. My BIL has MND and cannot speak or swallow. By now he receives 4 visits per day from carers, so I would hope similar support is there for your mum and it sounds like you all need to access it. Good luck, as I know these things can be an administrative nightmare to get people what they need.

I think you need to tackle the care aspect. Tell your mum you’d rather your inheritance was spent on caring for her now so that all your memories are as happy and relaxed as possible.

@LakieLady she can no longer eat proper food but I have made her countless lovely, fattening soups that she really enjoys but for the last 5 days won’t drink them. She will drink most if I sit with her but if I go off to do one of the countless other tasks she will drink between a third and a half, put it down and then it’s ‘too cold’. If I don’t go round (went to London late Friday night and got back late Saturday night so was away for less than 24 hours), Dad asks her if she wants anything, she will say no and so he doesn’t get her anything! So she ate nothing on Saturday.

I’m a nanny, I have been a nanny for 32 years, I’m good at caring, this is so difficult! So many different emotions coming in to play.