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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

How do I ask for care for my mum?

28 replies

tonotknowhowtoask · 16/06/2021 21:38

Using AIBU for traffic .

I’ve absolutely no idea what I do in this scenario and don’t have family to ask .

DM is 55, she has significant mental illness and other disabilities . I’m having therapy at the moment - therapist suggested my mum could be autistic . She struggles with executive functioning, socialising, household routines, communication, and has been in a bit of a fog for several years. I actually thought she had some sort of dementia as did a few relatives, but that’s been assessed and been told they’re pretty sure it isn’t that . She’s had brain scans, and tests that were all normal .

Went away with her this weekend and she couldn’t remember how to shower because we weren’t at home - as if she couldn’t process all the necessary steps - I had to help her to find clothes, toiletries, and talk her through each step . It was the exact same trying to pack for said weekend - she had no ability to forward plan . This issue isn’t apparent at home - but therapist said could be compensatory strategies she’s using at home.

I am doing 99% of household stuff for her eg shopping, meals, cleaning, bills, finances, phone calls, appointments, making sure she has what she wants and needs . She doesn’t take control of anything .

She no longer actively contacts anyone - eg family, friends - it’s me that has to do that, and she won’t start a conversation with me much - won’t choose a TV programme, won’t talk about anything without me starting and doesn’t seem to remember what I’m discussing with her .

Won’t phone anyone . Won’t use Facebook etc . Says she can’t see (optician said this isn’t the case, no eyesight issues) and has word finding difficulties . Has very obvious massive difficulties with circumlocution (I think) - if I say can you pass me x she just stares around the room and says she can’t do it .

She says very odd things; not very often but it’s as if events have gotten tangled on her mind: she would tell you she’s worked in every ‘x’ in a 50 mile radius (not true), she thinks she’s lived all round the world (also not true); she talks oddly about relatives as if she’s gotten every relative confused into one; she seems to forget things have happened then suddenly remembers . Her friend died four years ago - every so often it’s like she remembers again and gets very distressed .

I’m a total loss of what to do . I’ve contacted GP (hers) who said as its mental illness (anything else not yet diagnosed) and she’s only 56 it isn’t her remit, it’s for charities . Therapist (who works in GP surgery) said this is nonsense, there’s plenty of help and GP needs to do more ... told me to go back and ask again .

When I’ve pulled back previously there’s been overdoses and police and all sorts . So I’m wary of reducing support .

Therapist said I have to ask for help and said she thought some sort of residential care might be most appropriate, but I don’t know where and who to ask . Mum would be devastated to lose her home and would never forgive me .

I did an econsult with GP - said not worried . Mental health team said not concerned . I am though, I’m sleeping with one ear open most nights as I don’t know what’s happening and I’m knackered . I can’t manage the entire house alone but I am . Even stuff like washing; if I don’t check there’s soap powder in the tumble drier or same washing goes round six times or something like that .

I haven’t got a clue what to do . I feel lonely, guilty, tired, sad and terrified and exhausted . When I think about it I have a sickening sense of this is actually a dementia, as it’s been getting worse for 5 years, every so often I just lie in bed and cry as I have a horrible feeling of how this is going to go - but I’m not sure; all I know is I’m knackered and can’t keep this going much longer . Where do I go? Who do I ask?

OP posts:
Bassetlover · 16/06/2021 22:07

Adult social care should be able to do an assessment and they also should do a carers assessment on you if you request it. I would also go back to her GP and demand another review and give the iinfo you have supplied here. Also maybe contact a mental health advocacy charity for support around this.

Soontobe60 · 16/06/2021 22:11

I agree, contact adult social care.

tonotknowhowtoask · 16/06/2021 22:11

I think social work have been round before; the last time she OD’d someone came round but said ultimately it was her responsibility ... I’ll give them a go again though . I want to be able to move on with my life knowing that she’s ultimately safe; even if there’s no way I can get my mum ‘back’ at least if she’s safe .... right now my life is totally on hold for her; and I’m not even sure that she’s happy.

OP posts:
Welshmaenad · 16/06/2021 22:12

Definitely adult social care. I'm an adults social worker in complex care and support and this is exactly the type of case I would be allocated. I'm happy for you to DM me if you need any help.

I don't think she necessarily needs residential care and it sounds like she's till has capacity so the choices are all hers. Direct payments and hiring PAs might be a good shout here.

ICouldHaveCheckedFirst · 16/06/2021 22:13

Maybe Contact AGEUK for advice?

(I'm not being ageist, as I'm older than your DM, just trying to help.)

BarbarianMum · 16/06/2021 22:13

What you are describing sounds very much like some kind of dementia. Your poor mum a d poor you.

I would do two things- ask to see a different gp and get your mum referred to a consultant neurologist for more assessment. I wouldn't just accept a diagnosis of mental illness at this point - which mental illness for a start?

For help putting together a care package, you need to speak to social services (adult social care) and request an assessment.

Ostara212 · 16/06/2021 22:19

OP "I’ve contacted GP (hers) who said as its mental illness (anything else not yet diagnosed) and she’s only 56 it isn’t her remit, it’s for charities ."

This is nonsense.

Write to the practice manager. Even if the GP thinks it's a mental health issue, they deal with those. Charities my arse.

Also call social care to ramp up pressure, she needs to see a doctor and maybe a specialist.

Bargebill19 · 16/06/2021 22:22

Good advice above.
I would add, make a diary. So you document what the situation was and how your mum responded. Like you have here. But keep adding to it. That way you have solid evidence for adult social services and your mums GP. It is easy to get flustered and not mention everything they need to know when at these appointments. Or sometimes the right question isn’t asked. This way you can say “I’m worried because in these situations, mum did this, and I don’t think that’s normal adult behaviour. Do you?”
Keep asking for help. You will get there.

suspiria777 · 16/06/2021 22:25

Does she have a long history of psychiatric illness with antipsychotic or other strong psychiatric drug treatment? Those (thorazine, stelazine, largactil/chlorpromazine, haloperidol, clozapine, respiredone type stuff) can have really startling long-term cognitive side effects. She could also have electrolyte disturbances - sodium and calcium in particular can cause cognitive symptoms including psychosis or delirium. And it's worth pushing her GP to refer for a brain scan tbh. My grandmother had some of the same symptoms you describe, her GP was unconcerned, and it turned out she had brain secondaries of bowel cancer (untreatable). If her behaviour is noticeably deteriorating, and more systems (speech, balance, mental processing) that suggests there is something physiological going on that needs investigating.

RickiTarr · 16/06/2021 22:29

They can’t base health and social care response on diagnosis only. Some people are never diagnosed despite obvious impairment. Persist with social services.

BTW, I’d run away from any therapist suggesting autism as an explanation for that description. Very uninformed & unprofessional.

bunburyscucumbersandwich · 16/06/2021 22:39

You need to ask adult social services for a carers assessment for you and a needs assessments for your mum.

It sounds tough, and you definitely sound like you need help in looking after your mum. You need to persist with the GP, and if they aren't helpful complain to their practice manager.

Catswithflamingos · 16/06/2021 22:44

Adult social services.

It’s a bit of a faff - you ring up and they take your details, then ring to arrange an initial phone call and assessment. This part took a couple of weeks.

My parent was then assigned a social worker who was able to arrange care in a matter of days. We kept revisiting this often and being at home was no longer suitable. My parent is now in a care home.

Social services and I started our relationship about 3 months ago.

Sorry that you are going through this.

Wilkolampshade · 16/06/2021 22:55

Yes, adult social care.
But do push push push for better and more respectful treatment from the GP.
My mum died aged 74, with Alzheimers, vascular dementia and Parkinsonian traits. Her behaviour was in many respects rather like your mums, (I'm sorry) but it took years and years for a proper diagnosis as she was, like yr mum, very young.
Bless you love. Have you any support from a partner? Close family?

Roodicus21 · 16/06/2021 23:37

Has there been a sudden change in her presentation or has she always been like this? I

tonotknowhowtoask · 16/06/2021 23:48

@Wilkolampshade

Yes, adult social care. But do push push push for better and more respectful treatment from the GP. My mum died aged 74, with Alzheimers, vascular dementia and Parkinsonian traits. Her behaviour was in many respects rather like your mums, (I'm sorry) but it took years and years for a proper diagnosis as she was, like yr mum, very young. Bless you love. Have you any support from a partner? Close family?
No partner or children of my own no . Have one sibling but she has significant issues herself and can’t support .

She’s been like this since at least 2016 or so but slowly worsening, and I’m not sure why. GP said they were convinced it was all psychiatric as she’s had mental health issues for years and years but then a relative cane round and said she thought it was early onset Alzheimer’s .

Mum has seen neuro specialist and other neuropsychology doctor who did various assessments about March last year, at that stage they said they were fairly convinced it wasn’t a dementia - CT brain was normal etc . She’s has mental health for forty odd years she’s been in hospital and had shock treatment and all sorts.

It’s the total lack of ‘mumness’ that gets me . I can’t ask her for any advice or help . I haven’t any family I can ask either . She doesn’t even talk about like when we were kids, it’s as if she isn’t interested. I have a very close friend who’s much older than me who I can turn to for some advice but I miss my mum iyswim . Even if she’s still in the house with me I get an ache every so often and think, where did mum go? It’s so bloody awful .

I’ll ring adult social care again, and I’ll also ask GP - could say therapist was nudging at me . She’s also given me phone numbers for neuropsychology service who deal with mums original mental health diagnosis, who might be able to help I suppose - I need to know either way what’s going on . If it’s the worst I need to start dealing with that, if as I desperately hope it isn’t then I can try to get mum more effective support - I’m not sure I am the best
person to be providing it really .

I’ll get that diary started too; therapist did ask me to try and note down all the things I’m doing on a daily basis and why I’m concerned and see what GP says to that .

OP posts:
tonotknowhowtoask · 16/06/2021 23:51

@Welshmaenad

Definitely adult social care. I'm an adults social worker in complex care and support and this is exactly the type of case I would be allocated. I'm happy for you to DM me if you need any help.

I don't think she necessarily needs residential care and it sounds like she's till has capacity so the choices are all hers. Direct payments and hiring PAs might be a good shout here.

Thank you Flowers I’ll DM you in the morning x
OP posts:
threeteenstaximum · 16/06/2021 23:55

Hi, does mum live alone or does she live with you?

The way to getting support fir for her mental health is via her GP
She isn't older adult community Kentish health or community services she's younger adult mental health team and they have very high criteria

I would recommend you bullet point your concerns snd send to GP requesting help due to your concerns about her

The GP will have something to record and decide but presently it rests with her GP

Ps this is my field

threeteenstaximum · 16/06/2021 23:56

Mental health nor Kentish help 🙄 stupid phone!

RickiTarr · 16/06/2021 23:58
Smile
tonotknowhowtoask · 16/06/2021 23:59

@threeteenstaximum

Hi, does mum live alone or does she live with you?

The way to getting support fir for her mental health is via her GP
She isn't older adult community Kentish health or community services she's younger adult mental health team and they have very high criteria

I would recommend you bullet point your concerns snd send to GP requesting help due to your concerns about her

The GP will have something to record and decide but presently it rests with her GP

Ps this is my field

I’m living with her at the moment - hoping to move back out at some point in the near future, possibly September but not 100% sure . Thank you - will do that, even if I’ve got a written record that must help a bit . Will definitely contact GP again - keep feeling like I’m being totally dismissed by them so will get a bit more persistent . Nurse said she’d try to contact mental health team but that was a whole month ago now and not heard anything at all, which is frustrating .
OP posts:
madroid · 17/06/2021 00:03

The trouble is while you're supporting her they will not offer any help. She's not in crisis.

They don't care that carers are exhausted.

Orf1abc · 17/06/2021 00:03

Your therapist needs to be reported for her 'diagnosis'. Nothing that you've described would suggest autism. What is your mum's original diagnosis? Does she currently have a CPN or care coordinator?

For practical help, I'd agree that you both need a social care assessment.

threeteenstaximum · 17/06/2021 00:05

Good

That's a plan

You can send in what you want as a relative to GP and if you billet point your concerns, keep it factual , your GP has to decide whether to act upon it. But at least they know

If it helps, there is a very high threshold for younger than 65 Mh problems in terms of behaviour, because services don't want to intervene without evidence of increasing risk or Mh deterioration

When you document it, and share that in clear concise ways, it gives a trial and evidence that primary health services can look at snd they take the lead in this until there is a crisis or overwhelming evidence that a different team needs to step in

tonotknowhowtoask · 17/06/2021 00:05

@Orf1abc

Your therapist needs to be reported for her 'diagnosis'. Nothing that you've described would suggest autism. What is your mum's original diagnosis? Does she currently have a CPN or care coordinator?

For practical help, I'd agree that you both need a social care assessment.

Functional neurological disorder and ?EUPD is most up to date diagnosis - prior to that it was ‘anxiety neurosis and hysterical personality disorder’ Hmm . She doesn’t have a CPN no, not sure who her care coordinator would be either .
OP posts:
threeteenstaximum · 17/06/2021 00:06

Ugh sorry about typos and auto incorrects , naughty phone

So many, but I meant trail not trial!