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!

Just to mention you can’t get carers allowance past retirement age (state pension age) as pp mentioned.

My 2 sisters and i cared for my mum who also had MND, along side carers twice a day. It was really really tough. Your dad sounds like he isn't coping not just with the physical but also the emotional side of it. I strongly suggest you get additional support. Your dear mum deserves all the positive support she can get. I wish you all the very best. Its a really hard journey. Contact the MND Association. They were great with us.

As this is a medical condition your mother should qualify for free care from Continuing Healthcare. The charity I used to work for had CHC funding for three people. The Motor Neurone Association should also be able to help you all.

I’m sure it was unintentional, but you have made his wife sound like a badly functioning appliance. That’s the attitude that needs challenging.

Getting him support as a carer and as a man with autism who is struggling will be helpful, but don’t frame it in terms of his wife’s illness impacting his comfort.

Being angry towards someone who is ill to the point that the person is in distress about the displayed anger is emotional abuse. OP says "He is actively angry at her". Granted "actively" is often a meaningless filler word, but if it's being used correctly here it means he's angry in front of her and around her. If he's just privately angry with her but managing to be caring and supportive around her that's different. But he is also being "awful and horrible" according to the OP's mum.

She's vulnerable and at risk. Even if it isn't abuse and is just carer breakdown, SS needs to be informed.

He and DM need more outside help.
Sooner rather than later. It’s soul destroying being a 24/7 carer for someone you love who you not only know isn't going to get better, you know its only going to get worse.
If money isn't an issue, I’d consider a care home where you can all go back to being spouse/children not carers. At the very least up the care visits, cleaner, gardener, whatever takes the load off.

Thank you for correcting, I wasn’t aware of this at all.

I have to say some of the advice seems suspiciously like telling an autistic person not to be so autistic.

Trying to fundamentally alter your DFs personality seems a rather large challenge, particularly when so much else is happening.

There may be some success in giving him some specific pointers about what not to do, but as I find most of caring - and I do very little face to face- is effectively masking to the extreme because it’s about denying your own wants and emotions, there is the danger of extreme meltdown.

Your DF may simply not be capable of being a carer. There should be no shame in that. Get in as much help as possible- often elderly people are reluctant to use their funds for exactly the purpose they are intended.

Once your DF is doing less of the hands on work he may be more capable of controlling his emotions.

This reads very much like the life I didn't quite live.

My dad sounds exactly like yours. An emotionally neglectful childhood (including some sexual and physical abuse at his fancy public school as a pre-teen), some neurodivergency, the life and soul of the party when it suited him, but often very hard to live with behind closed doors. He had an explosive temper. My dad was also a keen "volunteer" in the community, but it often felt like a facade and to boost his own self-esteem. He liked being "admired" for his skills and knowledge.

He suffered some unexpected health issues in 2016'17, that ultimately caused him to have a nervous breakdown. He ended up passing away suddenly in September 2017. We never got an official cause of death, but suspect it was all linked.

As we healed from the trauma of his passing, we (my mum, sister and I) all said that it happened the right way around. If it had been mum that got ill, and subsequently died, dad would never have coped. He had zero adult coping skills of his own. Mum organised every single element of their lives from the day they married. Dad's sole responsibility was to hold down a job and bring in the money. Every other aspect of his life was organised by mum. Before he retired, I never saw the man do a single household chore. Never cooked a meal, never cleaned a bathroom, never did any childcare.

If he'd had to care for mum, it would have been a disaster. He'd have tried his best, I'm certain. But that "best" would have been sadly lacking. He'd have got overwhelmed very, very quickly. He'd have needed A LOT of support.

OP, with regard to your dad... He's 70. His time for learning kindness and empathy has long since past. He could drum it up when your mums illness had novelty value, and he could bask in his new aura of "devoted husband". But now it's turned into a day after day grind, he's over it.
That's not to say he doesn't love your mum, want to care for her, and want to see her being well-treated. It's just not in his nature to do that. It wouldn't have been in my dad's nature either. That's not to make either of them "bad men" or "bad husbands", they just have too much other stuff stacked against them.

There's two strategies I'd have taken if it had been me:
1: Skirt round dad entirely. Out-source as much care as possible to alternative providers, under the argument that dad can't/won't manage.
2: Provide dad with scripts and routines to follow with mums care. When my dad had his mental breakdown, social stories and "now/next/then" instructions worked really well. Give detailed, numbered instructions, including timings, for how things work.
He's bathing her? 1: Put X soap on sponge. 2: Soap around neck first. 3: Lift and wash under each arm.
Breaking it all down into a system and routine removes the emotional aspect of it.

I can only imagine how hard it is. Sending you lots of love.

Can anyone else in the family help to give your dad a break? 24/7 alone is very hard and he will not be able to sustain it physically or emotionally. Yes to buy in more care from professionals.

My father was just the same when my mother was diagnosed with terminal cancer.

In the end I had to give up my (self-employed) work for 6 months and move in with them both.

sorry pressed post too soon.

My moving in did mean that Mother was able to die peacefully in her home, which was her very strong wish. If I hadn't been able to intervene as I did she'd have had to spend her last weeks in a care home/hospice (which was the adult care services solution to the problem).

Contact your local MND specialist nurse. They will have seen this before and may offer some advice.

I recognise a lot of this. Some people just don’t have the skills, knowledge or personality to be good at caring for others. Yet because they are the spouse it’s assumed that they are the best person to do it 🤷‍♀️. My FIL loved MIL very deeply - but on his watch she was falling frequently, not clean and smelling of pee, not taking her medications, dehydrated and ended up in hospital with delirium. Yet it was never put up for discussion whether he was the appropriate person to be her primary carer - because he was her spouse and he said he wanted to do it. He just wasn’t able to but would have been outraged if anyone suggested as such to him.

Hello, I could not read this and run.

I am really sorry to hear that you and your family are going through this. I have been in a very similar position, my mother died last year from MND (also had frontotemporal dementia) and my father was her primary carer. A lot of high carer burden on my Dad and displaced anger, which at times was directed at my Mum and this was heartbreaking.

The MND association were a good source of support and there were funds they offered which were not based on financial assessment (for example a heavily subsidised chair lift).

Is your Mum under a MND multidisciplinary team? My mum had a key worker, an occupational therapist, who could link in to other members of the team to support Mum's care needs as things progressed (she got Mum the voice technology aids to enable her to communicate to some degree). If so, they could be a useful professional to share your concerns about the stress on your Dad and interactions you have observed, with regards to your Mum's vulnerability.

Do you have the involvement of palliative care? (people do not need to be in the later stages of illness for this) One of the nurses attached to hospice did a care act needs assessment. I'm not quite sure how he did this but Mum was provided with a package of care with carers four times a day, funded, which we were surprised at. It was a big help, but I suppose to acknowledge as well it can feel quite intrusive with different people in and out of the house, inevitably not able to stick to a strict schedule, just considering your Dad's neurodevelopmental needs.

The hospice also provided counselling for my Dad which he found useful, again this may or not be helpful for your Dad but something to explore. They can also potentially facilitate respite for your Dad.

Re: carers coming in, we found with dm (needing two carers, four times a day), that there is a regular team who tend to do the two shifts in the morning, and a regular team who tend to do the two shifts in the evening. There are other regulars who do the shifts at weekends. Of all those carers, my mum is closest to 4 of them, but still gets on well with the others. So it is not at all a constant stream of strangers coming in.

I do know. But I never made my late husband cry, and on the occasions (usually at 2 or 3 am) when my face might have shown some frustration, I always apologised.

ETA, after reading another post, that the hospice counselling was a great help to me. And my DH used to be taken to their day centre for a day a week, which gave me some down time, and him a change of scene.

He’s not coping and the autism won’t be helping. He needs support

Hi all, this is just to say a huge huge thanks to so many of these responses that are caring and practical. Especially appreciate those who've shared similar stories and the ways you've found through it. I didn't know what it would be like to have a parent be terminally ill and I'm taken aback by how much its all about family - I thought it would just be about her. You've given me lots to think on and action. Thank you. This has genuinely helped at a really crappy time. Its given me perspective and empathy that I'd been starting to lose. Appreciated. x

Thank you. Yes: same dads. Your advice is very helpful. It echoes a lot of what others are saying - that he isn't coping and won't cope. I need to be realistic and work through alternatives. Very much appreciate you sharing your own family dynamics.

Thank you. That's really helpful and thank you for taking the time to share. I'm so sorry about your mum.

He's not coping with your Mum's increasing needs. He's getting older himself and as you age you tire a bit more easily so sometimes less patient. I think you could buy your Mum additional support.

she is being abused unfortunately through her care. Do you want to cry anytime you drink water