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Elderly parents

Struggling: supporting two parents/ one neurodivergent parent

2 replies

EMGEMG · 21/07/2024 15:44

Be kind

My poor mum had a huge stroke in February and released back home 2 weeks ago after a really, really tough time of it. I can't express how tough it has been for her and the family. She wasn't treated as well as she should've been - won't go into it but we as a family submitted a 5 page formal complaint.

We're now in a different stage of her recovery and of course no one knows how things will pan out. But it is hard. I live in the same town as my mum and step dad so I've been 100% there throughout. Never questioning whether or not I support them. It was much too serious to not be involved.

However, there's a serious complication. My step dad is undiagnosed Aspergers (all of the signs are there and have been more decades). I've had to be the one making decisions, standing up to doctors, and also trying to manage my brothers who live elsewhere and need hassling to help out even from afar. Now, my mum's back home with complex needs, I'm staying with them for a few weeks to help settle her in, do tons of paperwork and help arrange longer term care.

I don't have any dependents or a relationship and I'm happy to help and I'm self-employed so very flexible with work. If I didn't do it, no one would.

The issue which I can feel brewing beneath the surface from my step-dad is possibly resentment towards me. Because of his neurodivergence I have had to be the decision-maker. The pressure has been enormous. If mum's in pain, or uncomfortable or struggling, he doesn't always respond - he often he sits very still and zones out. He's always been like this - nothing to do with age/ current situation. I have to instruct him to take any action. He has started to respond in way that makes me feel like I've been a total arsehole.

He tried to push her up a steep hill in her wheelchair yesterday - I asked him not to (he had heart attack last year) as I was worried about him, but he insisted. He got half way then asked me to take over. I'd previously told him I wanted to take a longer but safer route home as I was too tired, but he ignored me.

He's not safe to take her out alone in her wheelchair as it's quite hilly here so I need to accompany them for the time being. He can be very proud, but that could lead to an accident.

One my brothers persuaded him to get a live-in carer so when I move back home, they'll hopefully have full-time support for a while, while mum does her therapies, etc.

Mum wanted to come home not go into a care home, so we need to deal with it the best we can. She has mental capacity.

Because of the Aspergers, I'm not sure whether his behaviour is him reacting in his own way to my forthrightness (if I'm weren't forthright, believe me, things wouldn't be where they are now) or whether I'm actually being overbearing.

I'm slowly taking steps back from them as a couple (I'm literally sitting in different rooms like a teenager!), so they can try to figure it out but I also am aware that my step-dad cannot cope as he thinks he can (he's trying hard, I give him that), and mum wouldn't do any of her therapies.

Also, my mum can't talk clearly at the moment due the stroke, so she can express her own feelings or wishes a lot of the time which is terrible for her. But the speech therapy will hopefully help her. Although, another reason I'm involved is because my step-dad is extremely quiet so she never gets to practice her speech without me here. The therapists have said repeatedly that talking is really important.

This is a long post, but I want to ask for advice from anyone who's been in a similar situation? There are a lot of complexities in this case, due to neurodiversity and the impact of the stroke so appreciate other experiences might not be the same.

OP posts:
Octavia64 · 21/07/2024 15:52

A lot of people do not like being told what to do.

This applies both to people with and without Asperger's.

Your mother has some very specific needs now due to her stroke. Many people are not able to adapt and change to meet these needs when their partner/child is seriously impacted and the person in question usually suffers through sub-standard care.

Your mum has chosen to go home over being in a care home. The balance in the household has changed significantly and it will take him time to come to terms with that.

If she has paid carers in most or all of the time there shouldn't be too much h impact on her although he is likely to become resentful.

EmotionalBlackmail · 22/07/2024 08:12

Your mum has chosen to go home instead of into a care home. That means she's already chosen a less safe option. You need to let them get on with it. Either he'll adapt or it'll fail, and that's what often is the trigger for someone to go into a home. The steep hills thing - if he can't manage it, then he'll stop doing it. But he can't discover that unless you let him.

Yes, it's really frustrating! The practising speech thing. Loads of people don't do exercises they're meant to do after coming out of hospital. It nearly drove me mad when mine wouldn't do the physio after a hip replacement! But that's their choice.

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