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.

You are all allowed to be as unreasonable as you need to be in this incredibly sad and stressful situation.

Normal rules go out of the window. You love. She loves. Your dad loves too. That’s why it’s all so fucking hard.

It’s ok to need help, both with the practical stuff and with your emotional reaction to it all.

(Different situation but still caring for an ill loved one - my daughter’s paediatric team have arranged for me to have sessions with the hospital psychologist. Worth asking if your mum’s team can refer you for similar - much quicker than going through your own GP)

My heart goes out to you This must be so hard
Take a bit of time for yourself

You sound overwhelmed and it is OK to need a good cry.

I work in palliative care and specialise in neurology and can say I have never seen anyone with MND 'give up'. You may feel that your mum could do more if she tries but if the disease is progressing quickly, then more than likely she really really can't.

Does she have a specialist nurse or clinic that she goes to that you can speak to about your worries?

Also has anyone ever spoken to you about how MND can change behaviour and thinking? Over 50% of people with MND will be affected to some degree by this - it may show as apathy, loss of interest in doing things, rapid changes in emotions, difficulty in making decisions, not caring so much about other people and in severe cases memory loss and dementia.

Your mum may be affected by this if she is losing interest in doing things, finding it hard to learn how to use an ipad, seems to have different emotions to before.

Please look after yourself too - you may need counselling yourself to support you for what you are going through.

No advice from me but just a message to say I really feel for you, I hope you’ve got someone to support you too xx

You poor thing, I feel so sorry for you. I'm not surprised you got angry and upset. Everyone has a strop sometimes, and today's your turn. I'd suggest getting a cup of coffee, have a break and then go back. It sounds like you need a bit more support, and so do your parents.

That is so hard. YANBU at all. And nor is your mum. Or Dad. That is so cruel that they both have such awful awful illnesses.

to you. And and whatever else you fancy.

I think it is time for a sit down with your brother and try to come up. with a plan for the future. None of this will get better. You need plans in place.

OP I’m sorry you and your family are going through this, I cannot begin to imagine the worry and stress. I don’t know what to offer in terms of advice but I just wanted to offer a Hand hold to you.

Have you organised a carers assessment through Social Services? If not, I would look on your local councils website, search for Social Work Adult Care and there should be numbers there to call. I think that you definitely need care! It is not easy going from a caring role as a Mother, to cared for. It is even less so when you know you are facing a terrifying prognosis!

With actual carers in, that should take some of the guilt off your Mum, as she will feel guilty that you and your Father are having to help her.

It isn’t essential that she showers every day! A wash in bed on days that your DM is too exhausted is more than enough! You have said yourself that your DM was exhausted on the day of the wedding! I know that it would take me at least a couple of days to recover from a long day out. When you have chronic health condition, just washing and dressing can drain you for the day. Your DM may not have given up, she might just be too tired to go anywhere today.

Has your DM had an assessment from an occupational therapist? Or a physical therapist? There may be more aids that can make things easier for your DM at home. Does your DM have a wheelchair for when you go out?

I think she's allowed to give up you know. What is she really fighting for? To stay alive in a body that's shutting down? That must be an absolute living hell. If it were me I'd be turning my face to the wall, refusing to eat and having it over and done with.

I get that losing your mum Is horrendous OP, but she doesn't have to drag it out to make you feel better.

You obviously absolutely love her. Go and make your peace and support her in what she wants to do.

Please forgive me for saying , you sound a lovely caring daughter trying your hardest , but your mum is having to actually dealing with the pain, worry and terror of actually living with this awful disease.
With any progressive illness people are going to have days of utter despair, and it sounds a if something has made your mum think of her future , which to be honest ,is bleak, and it has set her thinking of the future she will have to face . It will seem horrendous and she probably wonders what is the point, and she has temporarily stopped trying until she regains a grip on her situation .

MND is a cruel disease. Your mum will find breathing, eating, talking, moving harder each day. She will not be able to carry out the most basic tasks for herself. It is a scary prospect and brings out fear, anger, sadness in buckets. She can’t turn that on to please you or anybody. She is allowed to make unwise decisions, to let herself go and to lack drive.
You sound overwhelmed nd that is also understandable. However I don’t think you fully appreciate her situation.
Is she under a neurologist? A local specialist MND nurse? A Speech Therapist yo assess her swallowing function? An OT to assess mobility needs? Professional help will benefit everyone. Even with it it’s a very difficult path.

I'm sorry OP. MND is the worst thing in the world, it really, really is.

Look after yourself. For your Mum, would she be open to antidepressants if she isn't already taking them? My friend who died of this shirty disease a few years ago resisted them for a long time but when she tried them, they just took the edge of her despair. This helped her enjoy the things she could enjoy (like her little boy) for a bit longer. Carers at home will help ease the pressure on family.

Again, I'm sorry. X

Perhaps the wedding exhausted her, and now it's anti climax. An outing with other people, strangers seems too much. You could go, see if there's any support, leave her home today, try again next time.
Start with a little outing, not too strenuous, wildlife and nature often uplifting, just drive to the park maybe?
So sorry you are going thru this. If your mum can't pick her mood up a bit, chat to gp. Also start looking what help is available

How very difficult for you. Is there any possibility of carers coming in during the day, to help with cleaning and caring for your mum. Are there any benefits you can get for them that might pay for help.

You’re a caring daughter and you want the best for your parents, but you have a family too and you and your brother can’t do everything. I should imagine that your mum (and dad too perhaps) is scared about what is happening to her and the speed of it. Refusal to do things is the only control left to her.

Take care of yourself and see what help you can get.

Nobody is being unreasonable. You are all dealing with a dreadful situation, one where emotions will run high and be varied.

I lost someone to PBP / MND earlier in the year. It really was an undignified disease, stripping away any independence and semblance of normal life. Your mum is most likely experiencing terrifying symptoms - not being able to swallow, choking on saliva, etc - and it will undoubtedly be a lot for her to be dealing with. Similarly, it can be terrifying to watch someone you love go through it. Take some time out to regroup. You all need to support each other, whether you agree about everything or not. Sending you all best wishes and strength.

I second looking into getting professional carers in to take some of the strain from you and your brother. But it’s not surprising considering your parents illnesses that some days it’s an effort to shower and the house is a mess. Bed baths on the days your mum can’t manage it are absolutely fine.

I have experience with this type of situation, Parkinsons, Dementia, Cancer although not MND.

This is such a difficult situation and there is no easy answer. Something that, I feel, is often overlooked is the individuals right to make their own decisions. Your DM has obviously been keeping herself going for DB’s wedding, she now clearly feels that things are different, she has achieved that goal, and now what?

Such a difficult time for your Mum. To have to be washed, dressed, to be spoken for, knowing that your DF is struggling, and that she is being a drain on your resources. (It won’t matter how much you tell her she isn’t). You have been outstanding by the way, but I think that now may be the time to get carers in to help your Mum and help around the house, with shopping etc. Being clean isn’t really negotiable, but there may be some mid way point, (carers will be used to washing clients without the use of a bath or shower).

I think there has to be acceptance on your part that no matter what you do and how hard you try, your DM will progress down the MND path. Awful I know, I had to accept that about my DF (not MND) and it’s isnt easy.

All these progressive illnesses need a flexible approach as they tend to have a stepped progress profile. Let your parents know that you are ok, take a couple of days out, find out what’s available locally, and keep talking to your parents. 💐

So sorry OP.
Have you arranged carers for your Mum, and to assist your Dad. Believe me in my experience relatives often deal better with outside help than they do with "family"
My Dsis has Parkinsons and is increasingly "difficult" as the disease progresses, has lost interest in everything, hates having her grandchildren around etc and I think it is down to the lack of control she has over her life now.
She does not "act up" for the carers who now come in to assist my poor BIL.
You and your DB cannot take sole resposibility for your parents situation, if you do you will end up resenting them. My D Niece had to step back, as like yourself she was getting increasingly upset.
Do get some help asap

I have a close family member who died of Motor Neurone disease. It was 18 months of absolute hell for him. If he could have gone to Dignitas he would have.

YANBU! You hit the top of the red zone, pretty much everybody caring for someone with a severe disability or life-limiting/terminal illness does at some point. Cut yourself some slack, you can only do so much.

When you've calmed down, start looking for support - the marie ccurie support line - 0800 090 2309 - might be useful to you (they offer support regarding terminal illness in general) and their site might be useful to signpost you to other support as well.

No advice from me, I can't even begin to appreciate what you and your family is going through. Just

And so lovely to see all the kind posts on an AIBU thread.

Nothing to say except I'm so sorry you and your family are going through this incredibly hard time OP

You need support, and so does she.

This is a horrible, and inevitable, part of these sort of illnesses.

Speak to your GP and her GP. Say you need carers and input. You can't do this alone, and, I would expect that your mum wouldn't want you to.

Take some time off, have a cry and adjust the settings for everything tomorrow.

I was about to say have you had a social worker I to do an assessment of need? Then you can get carers in to help your parents. I know of a local parent of teenagers with MND, so much younger than your mum. He is keeping himself going by getting himself out and about, campaigning for MND research and writing a book etc. But when that becomes impossible and with out that purpose he may well fade fairly quickly. This may well be happening to your mum, she put all her energy into going to her son's wedding and now she has succeeded in that milestone she will perhaps not feel she has much to live for.