What support is there for undiagnosed ND ageing Mum

[CoCoNoDough]

My mum is 65 and lives with my dad 72. I think he will die in a couple of years. My mum I believe is quite clearly autistic and definitely ADHD. This is not in her awareness and I couldn't bring it up with her as she has crippling RSD and low self esteem and avoids any sort of confrontation at all costs.

She's very scatty and forgotful at the best of times and I think as she's aging it's getting worse. I think she's on the road to early dementia.

She lives 2 hours away from me and I just can't imagine how she would live without my dad. I know she would want to live with me...but that's not an option. I hold a lot of resentment towards her for what she wasn't able to offer me as a mum...through no fault of her own...it's just the way she is. Not able to live in the real world. She never had a career and isn't capable of doing much house work either. She's so sensitive and feels hurt by people every day in normal situations, so her energy just gets used up by that.

Anyway...what sort of support do you think she might be able to access once my dad dies?
She doesn't have the executive functioning to keep a house clean.

Has anyone been through something similar? Basically an undiagnosed ND parent ageing with increasing and unusual needs.

You’ve ‘diagnosed’ your mum with four issues in the space of a paragraph.

Work with her to find solutions to her problems and try and help her be proactive, you may be surprised by what she can do when supported

You obviously know your mum well, and seem to have knowledge of ND so I will respectfully disagree with @FelicityBeedle and say that you are allowed to offer an opinion on this.

I don't know if she would need a diagnosis to get social services support so can't comment there but I would think about tips and tricks you can drip into their daily routine now in order to keep her independent if she has to live on her own. Some ideas - online food shopping on a regular day, get an Alexa device and teach it to call people/set medication or appointment reminders etc, get a cleaner to keep on top of the house.

Edited to edit an edit which made no sense.

Look into her and your dad setting up a power of attorney now, (both health and financial) so that you (and/or sibling?) can help with life admin stuff, banking, health decisions, bringing in paid/social help. You can have your name added to the utility accounts so you can deal with electric, insurance, phone companies on her behalf.

I say this with kindness but come off social media and tiktok, give it 6 months then re-evaluate your relationship with your mother. If your dad has a terminal illness then her behaviours can be explained away as grief and stress, try supporting her. Bring a cleaner in, get their shopping online for them and set all their bills to direct debits.

She could come and live close to you in sheltered housing. Arrange a cleaner, meals delivered, carers as needed. Social services when applicable arrange services based on need not diagnosis. I don't think self diagnosing is helpful here, concentrate on where she requires assistance and get plans in place including power of attorney for both finance and medical. If they own their home this can be sold to fund and you have many more options than completely relying on social services but either way you can get her the help she needs as and when the time comes.

Yes people who are pre diagnosed still present as having the condition, possibly worse than those who had interventions as children. My son had autism the day before he was diagnosed and still does after. If you are dealing with these conditions you are dealing with them with or without the diagnosis. The bit you don’t seem to realise is they are disabling so sometimes no amount of support will overcome the issues. You wouldn’t expect a wheelchair user to walk would you?

There is a lot of ASD in my generation, diagnosed in my children’s generation and obviously that has come from my parents generation (undiagnosed) and beyond and it has really affected our family.

@CoCoNoDough All you can do is what you can. Put on your own gas mask, make conscious decisions about what you realistically can do and stick to those as best as possible. It is very challenging and if there are others involved (such as your father/siblings) there is a lot of underlying resentment that goes on but you just have to steer your course as best as you can.

You're dismissing the OP's lifelong experience of her mother.

I can't offer much help, my Mum is self aware and has tentatively explored the option of an official autism diagnosis - her practice nurse suggested it. It wouldn't necessarily bring extra support, she manages fine day to day anyway, her issues are dealing with people. But might make people she communicates with in healthcare more aware of her sensitivities.
In your Mum's case it would be difficult if she's not self aware.

Can we stop with the 'you just think you/your child/your relative is neurodivergent because of TikTok' dismissal?

A lot of people have missed out on a lifetime of self acceptance because they didn't know they were neurodivergent. OP has known her mother her whole life, she is curious about what impact this would have for her. That's an incredibly supportive stance. Very very few people are going around collecting neurodivergence to fit into a trend because trust me, it's not a fun thing to experience.

No advice OP but I'm in exactly the same boat with my mum and worry about it a lot. I talk about it with my DH a lot- he has spent enough time with my DM over the years to agree with me that she is very likely undiagnosed ND and can also see how having her as a mother has messed me up and why I resent her (while feeling guilty about this as- like you say- it's not her fault). The emotional support and validation from the situation being 'seen' by him (as well as therapy) helps and hopefully I can just somehow face the practical issues as they start to present themselves, one by one. Sending solidarity.

If you are ND you are higher risk for dementia so putting them together isn't a stretch.

What the OP says is suggestive of undiagnosed ND. There are people whom it's pretty fucking obvious for especially if you do have diagnosed family members.

But.

Bottom line, what support is there? Really fuck all especially as you are still involved. Councils will try and dodge the bullet if you are remotely involved they will try to do as little as possible and be difficult about it.

If you can persuade her to move then it will make your life easier in some ways but she will lose her social network meaning it's likely she will be even more dependent on you.

No easy answer here. My parents are struggling to find support for a family member in a very similar position.

A diagnosis may help to a degree but it's still hard to get the local authority to take on the responsibility.

My advice would be: decide in advance what level of support and involvement you can sustain, and don't go over that, because it will simply delay the inevitable crisis that prompts help and change, and exhaust and make you miserable in the meantime. That sounds cold, but unfortunately cold assessments sometimes have to me made in these circumstances.

@Surgicalprecison it doesn't feel kind at all. I could have clogged up my post by explicitly listing all of my mum's characteristics to explain why I thing she's ND, I could literally write a 2000 word essay on it. I'll say a few snipets...

She looses expensive and important things like her phone and hearing aids at least once a month. She can't cook, just has microwave meals and even then she'll forgot something like leave part of the packaging on. She cries at least once an hour...just a few tears...she's not upset it's overwhelm.
I know she loves and cares about me as she's always so excited to see me but she can't remember important details about me like the day I have a scan or when my children go back to school after the summer holidays or the day I find out about a promotion or even the days I work. She's a hoarder. She's quite child like... has loads of soft toys.

She talks in stories, never really has catch up conversations, it's always about some elaborate story that's happened recently or in her childhood...she doesn't check if you are listening. And it's rarely has any relevance to what we were doing or talking about.

My sister, her daughter was diagnosed at 8 years old as autistic, dyspraxic and dyscalculos. Being ND is genetic.

@FelicityBeedle

You’ve ‘diagnosed’ your mum with four issues in the space of a paragraph. Genuinely what's your point?

Why do you think your dad will die in a couple of years?

Thanks so much for all the helpful replies. They mean a lot to me. Makes me feel less alone. 💐

@UniversalTruth yes great ideas. I think I'll get her an alexa for Xmas. She loves looking up facts so I'll show her how she can use it for that. I could also use it to set her reminders for all her various medications...she's diabetic.

@mitogoshigg yeah good call about power of attorney.

@Alwayslurkingsometimesposting I'm getting divorced. Im glad your husband has been supportive and understanding, that restores my faith in healthy relationships a bit. I need to get some therapy I think. Thanks for the solidarity.

@RedToothBrush yes her mum got it at like 68.

@DreadPirateRobots thank you for saying that. I think I have the time to make cold decisions from now before things escalate.

Also curious as to why you think your dad will die soon.
I can relate to a lot of this post so following with interest

He had a hip replacement last year which had some complications with it's healing. His general health deteriorated a lot since then. He gets lots of chest infections and every cold going. Each time he gets ill he doesn't doesn't seem to bounce back to how he was before. I'm not saying his death is imminent I just think he's got to that frail old age earlier than expected.

If your dad is increasingly frail and your mum unable to navigate normal life how about suggesting they think about moving into sheltered housing sooner rather than later OP?

We moved our remaining elder into an independent flat but within a block. It's great. There was a ready made community for them, warden on site, their one bed flat is easier to maintain, social events on site which are not compulsory. Honestly it's really good. A weight off being honest.

It's a purchased flat, most are, they had a family home to sell (flat cost about half plus £10k to do up so still plenty in bank for them to enjoy).

I think it might be worth you opening up the possibility. Perhaps to your dad first whilst you can, explain to him gently your concerns for both/either of them if they were left alone.

If they won't move, in terms of assistance, if you mean council paid, depends on council but it's not much, if any if she is deemed physically capable and without an autism diagnosis, even with, there won't be much social help. People immobile after operations get bare minimum.

If they can pay, you can get more help. Cleaner, gardener.

But I would look to moving them together now, into housing that would be more suitable as they age further.

Otherwise it will end up being you OP or it will take up so much of your time they might as well move in.