Struggles with hoarding and mental health.

xSlytherinx · August 22

hiya. Neurodivergent & chronic pain sufferer here as well as a fun combo of mental illness/mental health issues here. Recently turned 30, terrified for my future.

My only support is mum but she’s been diagnosed with Alzheimer’s. Terrified for my future (which I know sounds selfish as it shouldn’t be about my worries it should be about my poor lovely mum. I am devastated for her but I try to ignore its happening or I start to cry and break down and truly can’t cope, I genuinely don’t know what life is going to be like in 5-10 years as I can’t really do anything for myself without her)

Since leaving supported living at age 23, I’ve been truly left with no support. CMHT dropped me as soon as I got referred for autism as they said I no longer have mental health issues and all is autism therefore they can’t help me?? GP tried to challenge but they denied my referral and said they will only help if I’m in crisis, GP said this means suicide attempts, where I struggle is my issues are SO MUCH more than suicidal and self harm issues, my physiotherapist thinks my life by default is crisis as I cannot do things for myself and live in such self neglect but CMHT said again that’s not an issue of mental health but adult social care

I suffer hallucinations and psychosis issues triggered by stress as well as horrific migraines that have recently turned into vertigo migraines as well, agoraphobia that is so severe I cannot attend a&e even when I had heart attack symptoms and struggle to even take bin bags out to my bin, dissociation episodes that mean I cannot leave the house safely, cook safely, as well as extremely severe depression that’s led to me being unable to care for myself, a lot of self neglect, hoarding, very dirty house etc. tried to get cleaner but due to clutter they cannot help, it’s so hard for me do the clutter.

my physiotherapist was amazing when she realised the level of self neglect I live with and suggested I go to social services but for some reason when the social worker came to visit me, instead of knocking on my door to talk to me she talked to my neighbours about me?! This was so so humiliating, I heard my neighbour then telling the postman I have severe mental issues, this should’ve been private :’( I withdrew my referral to them as I can’t cope with this. i cannot understand why she did this and they had no answer other than ‘she must have been concerned and doing a wellness check’ but I just can’t understand why she didn’t knock on my door or phone me so I feel like I cannot trust adult social care now which is devastating

anyway tonight I had a complete breakdown, after a very tearful few hours I realised if I don’t try to at least sort my home out I will never be able to be peaceful as right now I can’t even call 999 if needed as it’s so messy and I’m too ashamed and recently I was having symptoms where I really should’ve called but it’s just so embarrassing I feel so alone in how messy and dirty my home is

I have used some of my PIP money and paid a rubbish collection company to come on Tuesday morning to collect black bags full of stuff I don’t need and stuff I’ve hoarded out of anxiety and ocd fears.
I could only afford to pay for the basic tier so I can’t give them loads and loads but I can give them around 6-8 black bin bags which is a good start.

And I should be getting my first UC payment since migrating from ESA next week, so hopefully once I have paid bills and done my online food shop and credit card payments I can maybe do another 6 bags with this company :) I’m hoping that perhaps in 1 year time, my home won’t have all this clutter and maybe I can get a cleaner! That’s my goal and honestly my dream, which sounds so pathetic probably

My pain is extremely bad and is really flaring up already from just doing 1 bin bag, but I’ve already paid the money for the bags so I am trying my hardest to push through.

Feeling very sad and isolated though so took a break to use my heat pad for my pain and take meds etc, thought I’d post on here and have a little vent really.

(I have an awful sleep pattern due to my ADHD, usually I just end up playing video games until the early hours so I’m doing something productive tonight with my headphones playing music like abba to cheer me up)

Sorry for all this. I don’t have anyone to talk to, I don’t have friends or anything as I had to leave school at 13 due to how severe my mental illness was and never known anyone my own age since really. mum can’t cope with long messages or stress these days so I try to act like I’m fine around her as I don’t want to cause her blood pressure to rise.

Otteline · August 23

I didn't want to read and run but just wanted to say that I am so sorry for your situation and your mum's dementia. There are some lovely people on her who will come and offer advice and chat. You have made a few steps towards the hoarding issue so that's a step in the right direction. Someone will come along soon and you have come to the right place for support.

WhatThe · August 23

Hello and welcome to Scope 🤩

I can maybe do another 6 bags with this company :) I’m hoping that perhaps in 1 year time, my home won’t have all this clutter and maybe I can get a cleaner! That’s my goal and honestly my dream

Congratulations on joining the forum and making your first post! More congratulations for making a start with the decluttering - that's often the hardest step to take.

Planning ahead is notoriously difficult when you're on the spectrum but thinking about your future is another positive, especially with so many barriers to overcome. You'll find plenty of support and understanding here so keep posting.

Consider whether your junk is saleable because if it is, there may be a charity shop willing to collect your bags at no cost (next time). I don't want to give you more decisions to make in terms of sorting but this may help keep the costs down.

I wish you a productive weekend 🌷

Holly_Scope · August 26

Welcome @xSlytherinx. Really pleased you've joined us and thank you for being so open. I second what @WhatThe has said completely here. It seems like you're making some really big steps and you should be incredibly proud. I've popped you an email as well - please keep an eye out for it 😊

pburns1337 · August 26

Wow, you have a lot to deal with. I think there is a lot of support nowadays for people with Alzheimers, so maybe your mum could access some of that if she needs to.

Maybe an online Zoom support group could be of some help with the hoarding issue? If you look at the very bottom of this page that I link to, there is a support group for OCD - Hoarding sufferers. Maybe that could give you some ideas.

https://ocdaction.org.uk/online-support-groups/

I would also suggest looking into going on a Mindfulness course if you have the time, it might not seem all that efficacious but since I did a course on Mindfulness early last year, it has had a surprising effect on how I think and how I look at the world.

Keep in touch, you did a very good thing to reach out to people like this.

66Mustang · August 26

@xSlytherinx

I think you've done well to come out and post and honestly think you've taken the hardest steps in these first things you've done… Not that it's downhill or easy from now but you just seem like you're going to do it… 🤔 you've proven you can do something uncomfortable, so you can do it again and again, and each time it gets a bit easier!

Something which we all seem to find out the hard way, is there isn't a system where you can rely on one professional point of contact to help you through everything. That's why I found peer support so much help, as peers are - by definition - in it for similar timescales. At first forums and things, as in-person stuff was out of the question, but in time going to groups and stuff helped me too. I can't overstate how much I benefitted from just interacting with people in a similar position and others said the same as well.

Thanks for writing this as it struck a chord with me. I don't want to say I see myself at any point in time, it's not so one-dimensional that somebody is ahead or behind or in the same position as someone else… I hope you manage to come back and post again though.. I'd really like to hear how you're getting on 😊

Struggles with hoarding and mental health.

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