Concerned how my dad is caring for my terminally ill mum

[TheOpenReader]

TLDR: older, privileged and autistic dad reacting angrily - but insistently - to caring for my mum with MND. Advice needed!

Hi, this is my first ever time asking strangers on the internet to help. But I'm worried and my mum's diagnosis - motor neurone disease - doesn't give us long.

My problem is my dad's behaviour. My mum can no longer speak or drink water (she is peg fed) and walking is increasingly hard. Yet despite this she is in good humour, social, quick to laugh, and facing it all with a a barely flinching bravery.

My dad however is being - in my mum's words - awful and horrible. I want advice on what, if anything, I can do to help him be kinder.

They've been marred 50 years. His background is boarding school, Oxford, the apple of his mother's eye. He's fairly (undiagnosed) autistic. He's told me he's felt lonely his whole life. He can be the consumete host but behind doors he's always been grumpy and emotionally loud - angry but never violent. He's also the first person to help and volunteer if anyone needs anything.

But the way he's treating my mum is so bad. He's actively angry at her. One example: today he was giving her water after lunch. I came in and she was crying. I asked what was wrong and he said 'its just her illness'. Totally dismissed her feelings - yet was obviously the cause of it. There are multiple instances like this every day. He is not gentle, or patient, or loving. Yet he would say she's the love of his life etc etc.

They are both late 70s. They have some care support in the mornings and can afford to increase this as my mum's needs grow.

Please any advice on how I can usefully improve things. Has anyone been through something similar? I am a bit of a confidante for him but he isn't listening to me and we've had some blazing rows.I am struggling have any empathy towards him. The care demands are going to get a lot heavier - I dread to think how he'll respond. I am also worried how I'll forgive him for this later.

Sorry its so log!

He sounds like he needs more support, himself. It's dreadfully hard being a carer, he's also old and he's losing the love of his life. He likely IS angry, and it's coming out the wrong way.

Who can he speak to? What other services can they afford to pay for? How much are you / your siblings (if you have any) involved in the day to day?

He is probably too old to be caring for her.
Can you / other family be there more?

I imagine as much as he loves her, caring for her through this stage must be very very difficult and it doesn't sound like he's coping well.

If there is any way you can move in there or take her into your house please do, she doesn’t deserve this

you need to spell out to your dad clearly that shouting at her is totally unacceptable, she is dying and deserves gentle kindness only. Make it clear to him that if he continues to treat her unkindly he will be dead to you once your mum is gone.

He’s not coping, and he deserves recognition for the awful, heartbreaking position he is in too. His suffering will be high here too. I’d push for them to get more carers and encourage him to find some support with other in his position.

So sorry to hear this. It sounds like they both need to accept more help - and the care package needs to increase. It is emotionally exhausting being a 24/7 carer for your partner, and I wonder whether it is more difficult if you are not used to a caring role / household tasks. While also grieving for the diagnosis of your partner. Not the same situation, but my dm became very physically disabled, and my df became her carer, 24/7, including personal care. She didn’t want external carers in, and he felt it was something he had to do. But it took a huge amount out of him, and the mood and dynamic between them changed - it was heart-breaking to see. I could see there was a lot of anger and frustration from my df. The situation changed, and my df became very ill, and it became non-negotiable that my dm had to have external carers in, and I think there was a transition period of a few days (where dm was resentful), but she soon grew to feel that the carers are good friends, who bring a lot to her life, not just the practical things.

It sounds like your parents would benefit from a care assessment from the council - it is really helpful as it is a third party who establishes what level of support is needed. When we went through the process last year, after the assessment and recommendation, we went through the financial assessment process - to see what my dm needed to contribute to her care. In the uk, I think if your mum has £23k of savings then she will have to pay for all of the care. Otherwise there is an assessment of level of savings and income (of the individual, not the couple).

Obviously this is not MND specific - are there any specific MND support organisations who can also give advice?

You can make a Safeguarding referral to Social Services via Adult Safeguarding. They should assess DM's needs and offer DF the further support that they both need. So long as DM can make her views known and will do so, DF won't be able to just say that they can manage. Is there input from a specialist nursing team? Could you talk to them about your concerns?

Report to adult social services. This is abuse. Doesn't matter why it's happening. It's abuse.

Has your mum applied for attendance allowance? It could help cover more paid support, which sounds like it is needed.

Please increase the carers visits - having other people there will keep her safer.

@TheOpenReader I wonder if this could be helpful for you and your parents?

It's a very difficult situation for all of you, especially your poor Mum.

Would you feel able to have a conversation with him about getting in more support for them both.

You really should intervene @TheOpenReader because although everything is, obviously, very stressful, there is no excuse for his unkindness, if it's constant.

You need to protect your Mum 🌸

Does your mum have mental capacity to make decisions about her own care? And is there any way for her to communicate her wishes to you?

I agree and would be clear about the abuse. Someone with MND is exceptionally vulnerable and, as you say, she doesn’t have long. All the other points by PP about your father dealing with the loss of your mum and so on are right but he clearly can’t cope and he needs more support or your mum needs to be in a different environment. I’m so sorry you are all going through this. I lost a friend to MND and know what a difficult disease it is to navigate.

It’s obviously too much for him

They need more paid care. This is what we save for, it’s now pouring down. Don’t leave it too long.

I can only imagine your worry. My NDN sadly passed away from MND and the care she needed and got from the wider family was massive. I would also involve social services and ask for a care assessment. Had to do this recently with my very difficult DB with moderate LD. We told social services over the phone exactly how it was, what resistance they would likely get from DB and what the reality of his needs actually was. Social Services were very neutral when they did the care assessment in person and in the written report, but I read between the lines and they had got the message.

Don’t hold back when you speak to SS, tell them as it is, what your real concerns are, how your dad is with her.

Any other siblings you can involve? You can’t do this alone. Thoughts and prayers x

Edited to add, as per previous posts, she will very likely be entitled to Attendance Allowance too which isn’t means tested.

What a horrible situation for everyone.

My DPs are in a slightly similar situation- as DM now bed bound DF prepares meals and is required to do more than he has done for last 30 years. He is shouty and bad tempered about it, but they also have carers that would do more if he would let them. If someone isn’t a natural carer it’s a very difficult position to be thrust into, especially as he is also watching his DW decline in front of his eyes.

The main thing that would alleviate this is getting in paid care. So get your DMs attendance allowance completed- I think it can be fast tracked for certain situations, DF should be eligible for carers allowance, involve social care if they aren’t already involved and sit down with DF and work out what can be afforded. There may also be support groups through MND charities or more generic carers groups.

DM may not want paid carers. Unfortunately she needs to be overruled. Most people would rather have family caring for them, but it’s so hard and as her care needs will increase it’s good to introduce it now before two people are needed for lifting etc. Please don’t take on more yourself than you are able to do.

Obviously this is different if you feel what you DF is doing/saying veers into the territory of abuse. In which case residential care may be the only option.

@SundayMondayMyDay writes that “In the uk, I think if your mum has £23k of savings then she will have to pay for all of the care. Otherwise there is an assessment of level of savings and income (of the individual, not the couple)”

This isn’t true of all the U.K. In Scotland, if a patient is assessed as requiring specific care, that care is provided free of charge and without means testing. In addition, if the family prefers to use their own carers, the local authority will provide a budget to pay all or part of this under Self-directive Support legislation.

What the op has described isnt abuse. She walked in and her mum was crying. She doesn’t say her father was hitting her, shouting at her, forcing water down her!

It sounds like your dad has been like this throughout their marriage, and presumably your mum has tolerated / lived with it all that time. But now she’s ill she no longer has the capacity to ignore or tolerate the way he speaks to her? Has she ever stood up to him in the past ?

when you say you are your dad’s ‘confidante’ what do you mean ? Does he tell you secrets ? Have you some special insight into his character ? TBH it sounds more like you have been conditioned from childhood to accept his rudeness, grumpiness, aggression.

want advice on what, if anything, I can do to help him be kinder.
You know your father better than any of us OP. Do you think he has the capacity to be kind, thoughtful, caring in the way he interacts with your mum ? Is he capable of changing ? Do your ‘blazing rows’ have any impact on his behaviour ?

Agree with the pps that your parents probably need an increase of outside care. What does your mum want in terms of intervention, if getting her DH to be kinder is not an option ?

You can’t help him be kinder, he’s had 70 years to practise being kinder and hasn’t chosen to prioritise it.

I’d take him out for a meal while someone sits with your mum.
Tell him
you know he loves her and wants the best for her. Unfortunately some things he does feel very unpleasant for your mum.
You know he doesn’t mean it but he sounds angry and that is scary for your mum.
You know he doesn’t mean it, but he is rough and that hurts your mum.
You know he doesn’t mean it but when he’s impatient it upsets mum.

It’s very hard for him, but it’s harder for mum and she can’t get away or protect herself from his anger.

You have to be clear that you separate his feelings from what your mum experiences. And you have to be clear that his actions hurt your mum.

My DH is like this. He needed direct coaching and challenging to change his behaviour. He seems to think that if he isn’t naturally this that or the other, then that’s ok, it’s not his responsibility. I’ve had to tell him that he can challenge himself, choose to be better.

You dad is no doubt scared of what the future holds and also feeling (even if he doesn’t realise it) put upon with all of these domestic tasks I doubt he has ever had to think about before and is missing the feeling of being cared for himself. Unfortunately, he doesn’t know how to express this.
Would respite care be an option? You would probably have to care for it but your mum might enjoy a change of scene and your dad like being off duty for a period.
Do they have a cleaner or a housekeeper as well as a carer? If not, could this be introduced? It is another person in the house but I am guessing your dad is of an age and a background where he hasn’t done those sorts of things. Is there someone near by who could cook “proper” meals for him a couple of times a week and drop them off? There is only so much carers and ready meals can do,
especially if your mum has been a good home cook who has learned to cater to his tastes over the years.

Her mum says he's being awful and horrible. The crying is just one small example. If he's making her cry several times a day, or even if he's nasty but she doesn't cry, that's abuse. OP's mum is dependent on him, she can't escape. Abuse doesn't have to be physical.

I think this approach is good @TheOpenReader and also give him ideas or options to do instead- especially if you think he is high functioning autistic. Giving him some new rules may help him adjust and change accordingly. Sounds like he has always been a certain way but he needs to now know he can’t keep on being like this when it is so upsetting for your Mum. He also needs some more support and somewhere to offload as he will be angry at this awful situation your mum and him are in. Her MND nurse specialist might have support options?

You have no idea how difficult it is to care for someone with high needs 24/7
He can’t cope
when did he last have a break
how much do you help

Does your mum want him caring for her?

If she does, it sounds like he needs additional support to do so and the care package at home may need to increase if other family members are unable to step in to provide respite.

If she doesn't want him involved at all that is her choice not his, and you need to start exploring other options. Whether that be full time care in the home or her moving elsewhere.