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.

Nobody can force her to do anything whatsoever. If she does not want to go to hospital to be fed intravenously, if she does not want a feeding tube into her stomach she doesn’t have to.

You are not unreasonable in not coping but she is not unreasonable to want to die in her own home in her own time. She is right in thinking that she has nothing to live for, hard as that is and you would do well to accept that ‘Christmas with all the family’ holds no joy for her.
Allowing someone to die is the kindest thing you can do, also the hardest.

@Callaird after reading this I want to sit on a park bench and cry too!

Do you have anyone supporting you?

@CaledonianQueen I called adult social services on Friday, they called about an hour after my original post to say that carers are coming out everyday for an hour in the morning and and hour in the evening, she will do it for them!

I’m amazed, I thought it would be like everything else, a 12 - 16 week wait.

Thank goodness for Hampshire county council!

Honestly it sound like she's had enough, it's awful for you, but who can blame her. Having a feeding tube inserted to prolong this disease has probably brought things to a head with her.

Please be gentle and ask her what she wants.

@CaledonianQueen sorry, posted too soon.

We have been lucky in that the Wessex Neurology centre (NHS) has been amazing and rallied all the help mum needs so we have an OT, PT, SALT, District Nurse and the MND Association, who are godsends!

They have all been amazing about gettting mum everything she needs to live at home.

I have MS and find it incredibly difficult to be around other people who have it if they are further down the line to me as I find it quite scary. Could it be something similar for your mum?

This is why I always keep a supply of meds around so I can check out on my own terms. Not depressed, in fact I'm as happy as a pig in slop. I'm just ill and living in constant pain and crippledom. You don't understand it until it happens to you.

INCREDIBLY stressful and emotional time for ALL of you.

Have you tried to get extra help in for your parents? Could they afford to pay for this are they open to the idea?

Cuts to social care I know have caused a lot of problems.

From an emotional perspective, hard as it may be and I know this must be SO hard for you to see them like this (I also have elderly sick parents and relatives and it's heartbreaking. One in particular dd is very close to and has made all her "final arrangements" as advised by her Drs while she still can so that they're as she wishes, but this means she likely hasn't long left and I'm absolutely dreading it not just for myself as I love her dearly too, but especially for dd) unfortunately there's an element of acceptance you need to reach too.

In terms of the prognosis and in allowing your mum to exercise the little autonomy she has left.

I know the natural reaction to that idea is "hell no!" But unfortunately it's necessary.

What support emotionally do YOU have? Have you spoken to your GP? Are you getting support from other mnd carers or carers groups generally? Therapy?

It can be really helpful to talk to others in similar situations.

Fraught moments are bound to happen - don't fall into thinking they're disastrous it's absolutely understandable everyone involved needs to let off steam sometimes.

I used to work in geriatric care and found it so tough. Yet apparently I'm a hard faced cow according to some!

One lady told me after visiting her mum (alzheimers) she'd go home and thump hell out of a punchbag she'd bought precisely for this - she said to her the punchbag was the hated alzheimers that had taken her lovely mum.

Everyone has different ways of coping. I'm moved to tears by how hard this must be for you.

Something I know some carers and carees have actually found to be a weird bonding thing is to get angry together - not at each other but at the disease/situation. Both go "right we are going to scream and stamp our feet and throw punches at this bastarding mnd" and both have an "Anger session" I've seen it end up in both cathartic tears and laughter! It's a release and we all need that sometimes. She can still throw so maybe organise something where she can throw something like a bean bag or something as hard as she likes in a safe way.

I think doing the "look what you've got to live for" is a bit much. She didn't choose this and making her feel guilty for "letting the family down" is only going to hurt her more. Truth is there will be something "to live for" that she simply can't and you don't want your memories of her to be framed around her "letting you down" either.

It's hard to explain but it's a well acknowledged phenomenon with no medical basis whatsoever that many people seem to just know when they're ready to go and they go at that point. One of my grans "went" the day before her child who's emigrated was able to get there. And the family is firmly of the opinion that she did so to spare them being there when she died which the rest of them were - this person would not have coped well with the circumstances which involved a dnr decision. They'd have fought it and tried to get that decision ignored, but that would have been for their own - understandable - reasons.

"we have had very honest and frank discussions." That's really good many families don't manage this.

Funnily enough I've also been a nanny - it's a very different set of emotions and even skills involved. There's some crossover but lots that doesn't.

Tara and Charolais I'm sorry to say make good points too. Ultimately it's all your mothers decisions. If she doesn't want further treatments/measures taken that is her right.

The people in my life who are in similar positions have made "living wills" and made sure the whole family knows their wishes in various scenarios. Will be damn tough for whoever has to deal with that if that becomes the case but we love them enough that we'll honour their wishes.

Glad you're getting some respite in terms of carers going in twice a day hopefully that will help a little at least.

Oh Op, your poor, poor mum.

You are obviously angry-but don't take it out on your mum.

Perhaps you should leave your dad to cope & then they might both get the help that they need.

@Feefeetrixabelle We’ve told mum (and Dad) that we don’t care about her money, we’ve been telling them this for 25 years when they first retired! They both have very good personal pensions that pay all of their bills and leaves loads for them to enjoy themselves. They own their own home and have done so for 25 years. They do spend money on the house, mum does like a new kitchen every so often! The garden has recently been paved so mum can get out there with her wheeled walker.

But they don’t go on holiday, unless my brother and I book it for them, we booked and paid for flights and hotels in Vancouver and Toronto, Canada for their 50th wedding anniversary and then they added the Rocky Mountaineer and helicopter flights and day trips etc and spent more than double what my brother and I paid, but they would never have booked it themselves, they had been looking at brouchers for about 3 years when we took action and booked it! They had the time of their lives!

Their money is for us to enjoy when they pass on!!!

The reluctance to spend money is very common.

I remember one resident being admitted in threadbare clothes and shoes with holes in. They'd given their carers (no family) the impression they could just about afford the residential care - turned out to be a millionaire! Soon as the real situation was realised new clothes etc were organised.

One of my grans (different one) was needing new clothes etc. Not at threadbare level or anything but just generally reluctant to replace things and kept saying "that's your inheritance" eventually the DC sort of staged an intervention and said "enough's enough! We don't want or need the money you need to look after yourself and get what's needed to help you manage" and then various house improvements were made including stair lift etc which meant it was possible for her to stay at home which is what she wanted.

@Callaird please accept a very un MN hug from me. Six months ago my DSF simply decided to give up and die, he had a similar neurological condition to MND and when his breathing and swallowing started to become difficult he decided to stop living.
Hampshire Adult Services (small world!) were very supportive during his final years and then months, it was his GP that could have helped more.
I was in the process of getting him referred to the Phyllis Tuckwell Hospice at Farnham as they specialise in MND and neurological conditions.
If your DM is now that tired and at peace with her decision then realistically all you and the medical profession can do is support her and minimise her pain, discomfort and anxiety. I am so very sorry you and your family are facing such a difficult time

@Graphista thank you!!

I know you are all talking sense! I know she’ll have her off days, I just wish she would talk to me rather than throwing a teenage strop of her own!

We have all the outside care we can get, in place but mum doesn’t want carers!! She knows there will come a time that she will need it but right now, she doesn’t want to pay for it.

We have been told by the palliative care team that they won’t let her starve? Maybe I should look into this a bit more.

The first thing we did when she got the formal diagnosis was sort out her living will, we know what she wants and how she wants it to end. We have all the end of life medicines in the house so that the palliative care cream can make her as comfortable as possible at the end. We have the DNR certificate on the notice board just inside the front door along with details where to find the drugs. The palliative care team, all her MND support workers and the ambulance team have the code and location to the key safe so they can get in if needs be.

She’s having a bad day, I don’t think she has given up. We’ve spoken about it and if and when she decides that she’s had enough, she will tell us and we will do what we can to ease her pain.

Her GP is amazing, so caring and lovely and kind to mum. They are on board with ‘letting her go’. It’s all in her notes at the surgery.

Yesterday we were having a laugh while playing scrabble online, while in the same room, we ‘spoke’ through the scrabble app and it was a nice afternoon. She finished all her soup and had a pudding. It was a nice day. It was the fact that she wouldn’t talk to me. Just refused to even look at me. If she had sent me a message saying I’m not feeling up to the coffee morning this morning, I’d have said, that’s fine (after saying are you sure a couple of times!) and still gone over to sit with her. It’s just like when I was a teenager and didn’t want to go to school!! She ran away from home a few times when I was a teenager! Looks like the roles are being reversed.

To those that mention Dignitas, we have spoken to her about this and if she is ready we will sort it all out for her. Thankfully, she’ll still be of sound mind once her body starts to give up. But again, she doesn’t want to spend the money to go there as she’ll be depriving me, my brother and his daughter!!!

Callaird my profound sympathy. This is an awful time for your mother ...coming to terms with her reality ...and for all of you as well. The fact is that you too are coming to terms with her reality as well. Try to get some kind of little break ...even just a meal out with a good friend if you can. I hope you have some sympathetic listening ears in real life. Be kind to yourself. Best wishes to you and all of your family.

I'm so glad you've all spoken about 'the end' and are able to respect her wishes. DSF had also told us his wishes and it helped a great deal.

She is scared and I imagine so Is he .. it must be terrifying for her knowing what is ahead . I imagine she had the wedding to focus on and has now given up . You can't make her want to live sadly . Don't be too hard on yourself , it's rubbish losing a parent .

@Littlechocola not really. My life is in London, mum is in the south. My friends have stopped asking how it is as I just cry! I do still talk to them but not about mum.

My partner died 5 years ago and it sucks to be here again. Although, thankfully, his was very quick. I need to see a councillor but I just don’t have the time to go with taking mum and dad to various appointments, treatments and meetings. And when they don’t have the above, cooking and cleaning for them both.

Bear in mind that she may not want to talk to you about it because she doesn't want to upset you. And getting the wedding over & done with has probably brought it all home to her. It's hideous for her and not much better for you. Just try and take it one day at a time.

I know the pain of this - I've had a family member go through this, also with bulbar onset (with FTD too). They were cared for at home until the end, although by then they needed round the clock care from an outside agency and it was devastating.

If you're worried about nutrition, how about getting a PEG fitted? It makes feeds (and pain relief) so much easier, and can just be used to supplement general nutrition at first. Don't shy away from the nutrishakes/formula feeds, as they contain everything your mum will need and will help build her back up if she's losing weight.

Your mum might also be hiding how much she's struggling from you. We found the same - our relative tried to keep going as if everything was OK for as long as possible, and we had to intervene to get a driving ban, care in place, financial power of attorney (because of the FTD) etc.

Your mum will be eligible for PIP (or the equivalent if above retirement age) which you can then argue to be used for caring etc as it's to help her do the things her condition prevents.

I am so sorry. Please take care of yourself

I'm glad you have spoken to her and are ok to go with what she wants, whatever that may be.

Just a note regarding Dignitas. They don't do things instantly, you have to apply and be approved (I was once in the position where I could have needed it), so if that's in the mix for a possible future option it might be better to get the approval sorted and in place.

It's great she has you. You should be proud of yourself.

This is why I always keep a supply of meds around so I can check out on my own terms.

Me too. They're in my knicker drawer! Maybe I should keep a bottle of scotch up there to wash them down with.

The district/community nurses will come in and take care of your mum’s feeding tube while you are away. You need a key worker from your mum’s hospital or hospice team or a named social worker to pull all the multi agency stuff together for you (I know you are capable but it’s their job and they already know all the contacts you’ll need).

I have the community nurses round to look after my daughter’s Hickman line - I could theoretically learn to do it but it’s stressful for both of us and I would be terrified of messing up. Luckily I don’t have to take this on and neither do you - please tap into all the help you are entitled too ASAP.

If you can get a counsellor through your mum’s team they might be able to arrange to see you when you are already in for your mum’s appointments - this was arranged for me and I am so thankful for it.

💐poor you OP! that sounds incredibly hard going, I can sympathise that you are banging your head against a wall! Have you contacted social services to see if home care can be sorted?