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.

Please be kind to yourself OP x

It's really really hard! Have they got a social worker? We found the advice and just the friendly approach they had invaluable - don't get me wrong, most fell to me but they gave good emotional support. Next thing is to consider is their living situation, it seems they need to be looked after, look at options and into nhs continuing care which is not means tested.

From the post it's hard to give more specifics but you aren't alone, make sure you get support in real life as well as virtually from those going through similar situations

Idk what and RIG is. Is It the same as a PEG? It sounds like your mum needs one of these.

As for not wanting to spend your inheritance. You’re a nanny in London so I imagine can command a decent salary. Could you gently tell your mum that you aren’t working and therefore not getting paid so even though she’s not spending her money, you are still choosing to loose 22k a year. Her wellbeing is too important to do otherwise.

Having said that I think your parents, mum at least is probably going to need to go into a nursing home relatively soon as opposed to assisted living. Having seen a relative going through a similar, debilitating and progressive disease, this is only going to get worse for you. And for your mum. Your mum may soon need a lot more care depending on her mobility.

I agree with others that your mum probably kept herself going up until the wedding. I’m disabled and chronically ill and went to a family wedding a few years ago. I did all the right things, felt amazing on the day and completely crashed the day after. I don’t think I’ve ever felt as well since tbh.

It is hard to see a parent give up or not be able to try any more. It’s a very difficult thing to understand.

I am so sorry, this is such a heartbreaking situation. Go easy on yourself and keep reaching out to friends if you feel up to it. True friends will want to be there for you even if it's just to listen to you get things off your chest.

So sorry OP, what a stressful time you are having. MND Is a terrible disease, your poor mum.

Please seek some support for you and your family. It will help.

I have MS and it is tough, I have teenage sons and a DH, I worry about the impact my disease has on my family, our lives have had a change a lot.

Sending you a huge hug I expect you were overwhelmed today. I hope your mum has a brighter day tomorrow.

it sounds like hell, OP. No advice, but I'm sending you a virtual hug, and a strong back to lean on. Oh, and

@Mummyoflittledragon - I think a RIG and PEG are similar. RIG goes through the abdomin and into the stomach, mum signe the consent form for it last week and will have it fitted in a little over two weeks, although she can change her mind.

22k a year? I got £36k last year! However, she knows I have a lot of savings some of it in accessible savings. She’d never pay me to look after her. She’d be more likely to give my brother money to pay me to look after my niece!

I wouldn’t take money from her (or my brother) that’s how they brought us up!

We are very lucky to have a hospice (where the coffee morning was being held this morning!) very near to where my parents live and she will go there rather than a home. She will fight tooth and nail to stay at home and dad will do all he can to make sure that happens. The hospice provides palliative care at home so hopefully she will get her wish.

Mum and dad both have attendance allowance, mum at £85 and dad at £55. This would pay for private carers in their area for 7.5 hours a week! Dads already goes on a cleaner for 5 hours a week.

Thank you for your kind words and advice. It’s easy to give advice but much harder to take it!!

A big hug from me, OP. I am glad you arranged care and for your own health and sanity, you need to step back a little.
I hate to ask, but have you sorted out POAs for both your mum and dad? I had alarm bells ringing at your dad's dementia and you don't want to sort out your mum's care only to start firefighting for your dad. Worst case scenario, she dies, his illness progresses and you have a financial shitstorm on your hands sorting out the estate.

Take time for yourself and accept you are doing your best under utterly harrowing circumstances.

I’m so sad to hear that you have no support. Completely understand the no time to get support but what happens when you become unwell?
I’ve been there, I never found the answer.
We are here for you if that helps.

@TheABC. Thank you. We are sorting POA at the moment through the Government scheme, it seems pretty straight forward and mum and dad have very comprehensive wills that they have had for a very long time and have recently been amended to include my niece. Which to me seems frivolous! I have no children so all my worldly goods would go to my niece (after donations to MND Association and the local hospice)

@Littlechocola you are right, I know that! I’ve sent a message to mums MND area visitor asking if there is someone I can talk to. Hopefully they’ll be able to help quite soon.

I’m a coward and haven’t been back to mums, although I have called dad to remind him of his doctors appointment (that he has forgotten 6 times already) and he’s had a go at me, telling me I can’t give up on her. I’ll get round in the morning, she has daycare at the hospice on a Tuesday to give dad a break. I doubt she’ll go but I shall be much kinder in my persuasions tomorrow.

No practical advice other than a reminder you can't pour from an empty cup. Fill yourself us too - time with your niece, something for yourself and remember you're human too. The frustration you feel is because someone you love is changing before your eyes.

Please fill yourself up too.

I am so sorry to hear you are going through this. I don't think you are at all unreasonable. You have been going through so much and just reached the end of your tether at that point. Your feelings are totally valid, as are your Mum's.

MND is horrendous. DH's Dad died from it 16 years ago. His was also a very fast progressing type and it was horrific to see, especially once he reached the stage of being unable to swallow. MIL was his carer, and we helped out occasionally for the odd weekend, but our children were still very young. For some of the time I was pregnant and then DD3 was a newborn, so we were limited in what we could do.

I know that for MIL respite care occasionally was essential even though very expensive. It saved her sanity and allowed her to recharge etc.

Be sure to make the most out of whatever help is available where your parents live. Remember that you matter too.

I've seen DH's family go through this twice now, as MIL developed terminal cancer and died in 2014. My own parents are still around. In their eighties with minds as sharp as pins but failing bodies. They refuse to accept much in the way of help and are busy trying to deny what is happening. Understandable I guess, but it is so, so hard.

You have my sympathy.

Be kind to yourself❤

Be kind to yourself.
I lost my wonderful mum to this hideous disease. Contact the mnd association even if it is just for a chat x

Thanks for the clarification on the RIG. Yes it sounds like a PEG. I wasn’t meaning you would get her to pay you. I mean she thinks she’s saving you money but actually she’s not. It’s costing you far more than 22k (or your 50% ie 11k) to look after her. Bless her. I hope you can find a way of resolving this situation. It sounds incredibly stressful for all of you.

Have you had a carers assessment, you are, by law, entitled to one. you need to recognise that paid or unpaid this is your job, so you need time off from it. Your mum is being very selfish refusing carers as that puts more pressure on everyone else. Have a chat with her and explain you still want to be involved but you can't keep going at the rate you have been as you're finding it very hard to juggle everything.

Good luck x

You are not a coward! You are human!

You're allowed to take a step back and give yourself a bit of a break. Not just for yourself but your mum too.

So many carers keep on and on until they're virtually (or sometimes literally) at collapsing point. That actually doesn't help anyone.

My boss at my second residential job noted that I'd taken one residents somewhat unexpected death particularly hard. Quite a cantankerous lady but very funny and with some amazing stories of a wild life too. A life that had sadly resulted in infertility (Pow and subjected to some awful "experiments").

She was old and infirm but didn't have any particular known conditions.

Boss was kind enough to arrange a swap so I was off the next day to "regroup". I didn't even realise how hard it hit me until I went home and my legs literally deserted me! Then dh had to help me to chair! And I did indeed spend the next day just resting and getting my grip back!

So...you are NOT a coward.

You regroup, go in tomorrow all brisk and jolly and help your mum just as you have been doing a great job of doing so this far!

This is so hard. After I got married, my DM (with no health issues) said that she felt she had post wedding blues. It had been such a big build up with so many positive emotions that she felt a bit lost when it was over.

You are human going through a very stressful time. We all have our limits, particularly in emotive scenarios, and occasionally we reach the end of our tether. Nobody can be strong and together at all times

OP I’m sorry I don’t have good advice but I really feel for you you’re going through so much. I hope you’re okay xx

Thank you all for your kind words and information on things I can do for mum and dad.

I spoke to mum this afternoon. I apologised, she apologised. And we had a nice long chat. I’ve told her that for my own health I’m taking a step back but that I’m always the other end of the phone, obviously she can’t talk but I’ve shown her how to send an iMessage from her iPad and told her to practice lots. That if she’s having a bad day, she is to let me know and I can do other things and pop by later on rather than sitting on the sofa on my phone while she watches crap tv. If she wants some company then I would go over.

I met mum’s MND Association visitor for coffee today and she’s booked me into see a counsellor on Friday. I went to see mums GP today as well, she was lovely and I took up far too much of her time. She’s given me some anti anxiety tablets but the side effects are terrifying!

I feel better just talking honestly to you and the professionals. It’s so hard to say that I can’t help her anymore. I feel like I’m giving up on her.

Thank you all again for making me see it from both sides and not hating me!

Also, thank you for all the private messages. You really are very kind (best of vipers my arse!!) and I will get round to replying in the next few days.

nest of vipers

@Callaird
Glad to read your update.
We (the hive mind of MN) are always here for you.

Thank you for the update

So glad you've had a bit of rl support, and hope that marks an improvement in the care your mum gets while also signalling a much lesser load for you.

Don't be too scared of side effects! Read the leaflet carefully and talk to the gp if you get any effects that do worry you.

Good luck.