Scared and Depressed - My Mom Died

I understand how you feel.   I was also my mum's full time carer, living on income support & carers allowance. Until she passed away.  The accepted NT way of getting over it, is to say that she's in a better place now.   in my case it's true,  the final year was very hard, as both her physical and mental health deteriorated. 

My advice is to apply for Universal Credit ASAP,  the sooner you get into the system the better.  And you can apply for a cash advance. My experience of modern job centres and council offices,  is that it's less standing in queues,  more sitting down on comfortable seats with lots of cctv and uniformed security guards.  And often the places are not that busy and autism friendly. 

Glad you are connected with people who may be able to help with Universal Credit. Martian Tom is very knowledgeable about these things. 

It sounds like a really good idea to contact Mind again - services change all time. If we keep contacting services about our needs they will realise the lack of support for autistic people.

Healthwatch Birmingham should be able to tell you about all health and social care services in your local area. Again, if there are gaps for autistic adults it would be good to make them aware of this.

Here are the links just in case you want to take a look: 

Mind Peer Support
https://www.mind.org.uk/information-support/guides-to-support-and-services/peer-support-directory/find-peer-support-in-the-west/#.W_T1cZHfWf0

This page has links to different services in the West Midlands

Birmingham Healthwatch
https://healthwatchbirmingham.co.uk 

Healthwatch are there to listen to what you like about services and what you think could be improved. No matter how big or small the issue, they want to hear about it.

You can also speak to Healthwatch to find information about health and social care services available locally.

It's a very tough time for you but remember, you are surrounded by people who care here (). 

Thank you all for your supportive words and kindness. It helps to know I'm not alone. I joined a group on Facebook that Martian Tom recommended and hopefully they can also help with my universal credit questions.

I haven't managed to call or go to the Jobcentre yet. But I'm going to call Birmingham Mind later and ask about floating support. I don't know if they could help me. I had a support worker through Mind a few years ago but they discharged me after government cutbacks to mental health services. But maybe they could help me now because of my change of circumstances.

I'm deeply sorry Indigo to learn about the loss of your mother. I would say persevere with your application for ESA and PIP. Going by what I have read certainly suggests that you are entitled to those benefits. If you are turned down, which is often the case you can appeal and the majority of appeals are won. If you have to attend a so-called Work Capability Assessment, always ensure that someone comes with you. I lost my mother to ovarian cancer and I know first hand what you are going through. Losing a parent to whom you were close leaves a void which cannot be filled. I speak as a proffesional artist. In order to allieviate your difficulties, maybe you could try some art therapy or attend a creative writing class. I found creative writing beneficial. Anyway, Indigo, hard as it is. Stay strong and let us know how you get on with your benefit application.

Sorry to hear about your loss. I lost my mother earlier this year and it has been slow to register.

What struck me is it is not just your Mum, but all the other pressures you are under. There does not seem to be much of a support system around! And I would not envy anyone having to negotiate the UK Universal Credit system. 

Be open to ask for more support, is all I can suggest

How old was she?

So sorry to hear that :-(

Can you perhaps get an appointment at the job centre? I know how terrible it is to have to stand in line and be surrounded by all these people...

And I hate phone calls, so i know what you mean. But it's for a good cause.

Sorry to hear that.  My mum had many health problems, but managed to live independently until her final illness.  She was rushed into hospital, and the consultant took me to one side and said he didn't think she'd survive.  It was a horrible shock.  But then she recovered enough to go home, which was when I took over her care.  She wasn't expected to live long.  A few weeks, her GP said.  But she went on for another 7 months.  Towards the end, it was really hard for her.  In some ways, it would have been better if she'd been spared that final suffering.

I know it's very hard.  But your mum is at peace now, and out of pain.  And, as you said, she is still with you.  She knew you loved her and cared for her.  She'll have held onto that.

I am sorry. My Mom had a lot of health problems but it was still unexpected. She had a lung infection but it quickly developed into pneumonia and 2 days later she died. I think my subconscious still thinks she's here and hasn't accepted that she's gone.

Thank you. I'll try and get an appointment with my GP. Its hard to get through over the phone (and I really struggle with phone calls) but I'll see if I can book an appointment online quite soon.

Just the thought of going to the job centre fills me with dread. The overhead lights are so bright and overloading, and it's always really busy. But I will try.

Start with what Martian Tom said: visit your Work Centre.  Explain the situation and go from there.

I know you don't feel like it at the moment, and it sucks what happened - it really does - but you've got to be practical now.

Go see your GP (lucky you he seems understanding) and maybe get some help for calming your nerves a little. Explain the situation to him too.

Sudden is worse for family, better for the person him/herself.

My dad fell ill and died 3 months later. At least I got to prepare. And he had honest doctors, that helped too.

Was your mother's death expected? I lost my Dad when I was 17, but that was sudden. I don't know what's worse.

My work is at a day centre for people with autism and learning disabilities.  It's rewarding work, and my employers are sympathetic with my condition.  But it isn't for everyone, and it's draining.  I'd like to get out and into something else if I can.  But the hours suit me, and the pay is just enough (I live very cheaply!).  I wouldn't mind doing a cleaning job.  Something like that.

I keep mum's lavender bags in my wardrobe, and two under my pillow.  My brother is the complete opposite, and now can't deal with the smell of lavender.  But he's very buttoned-up emotionally.  He has to be because of his wife. She's a very hard and intolerant woman, and she wouldn't put up with shows of emotion.

Thanks for your reply Tom. I'm sorry you lost your Mom too. Its so hard, isn't it? I feel Mom around me too. I spray her perfume and it comforts me, and wear one of her rings. I ran out of candles but I ordered some online a few days ago.

I'll have a look at the Facebook groups you mentioned. The man from the advice company who helped me fill in my PIP application said he can help me with ESA too, and he can go to assesments. So hopefully that will make a difference.

I used to have a Support Worker through Mind, and she was amazing. But she had to discharge me 3 years ago because of the cutbacks to mental health services. I don't think there's any kind of help or support like that in my area nowadays.

I'd really like to find some kind of part time work, something simple and routine with a company who has an understanding of autism. I just don't know what, or where to start. 

Hi Indigo,

I'm so sorry to read about your mother.  I lost my own mother last year, after nursing her full-time during her final few months. Grief affects everyone differently, but I think the loss of someone so close (my mum was the centre of my life, and the only person I could really go to) can be particularly devastating for people such as we are.  After eighteen months, my feelings are still raw.  I know the sense of her loss will never leave me.  On the other side of it, though, I feel her presence around me and protecting me.  I still keep a weekly routine of lighting candles and having a quiet few minutes at the time of her passing.  I also have kept many of her things and have them around the flat: photos, pictures, candle holders, etc.  They bring comfort to me.  Other people might think it's morbid, and dwelling on it too much.  But I don't worry what other people think.  I find it reassuring, which is good enough.

I was the same, when my Carer's Allowance ran out.  Fortunately, the chap I saw at the Job Centre was very understanding and sympathetic - and he actually told me to apply for ESA rather than look for work.  It gave me some breathing space, and the assessment took almost four months to come through.  By that time, I'd found a part-time job, which I still have.  I felt, though - like you - that they would probably have found me fit for work.  This had happened to me once before, when I was off sick for a couple of years.  I had to go through appeals and tribunals, which I won through.  It's a deeply unfair system which especially discriminates, I think, against people with 'invisible' illnesses and conditions.

Can that company help you out again with your ESA/UC application?  If not, try to get to Citizens' Advice.  But also go to your local Job Centre, if you can get there, and explain to them what has happened.  Your GP has given you that note, and sounds supportive.  When you get your ESA assessment - which won't be for a while, most likely, as they have huge numbers of cases to get through on limited staff - try to get someone to go with you.  I contacted the local MIND, and they had someone who helped me.  I know what you mean about the 'neat and tidy' thing.  It's awful.  I had a friend who actually went to an assessment deliberately unkempt because she felt it was the only way that they would be convinced.  We shouldn't have to do things like that.  But the system isn't very caring.

Keep talking and sharing on here.  Many of us have been through the same, and we are caring.  We know how it is.  If you use social media, there are also some Facebook groups which offer support for benefit claimants: 'Benefit Advice Essentials' and 'ATOS Miracles' are two good ones.  Also, I find the information that these people offer very helpful:

Benefits and Work

Above all, take good care of yourself as much as you can.  You might find bereavement support groups in your area.  A local hospice offered me a place in a 6-week group, which was free.  I did find it helpful, in spite of being the only autistic person there.

Tom