Published on 12, July, 2020
My Mom died last month and I'm really struggling. I cared for her full time for about 4 years and my whole life revolved around her. I miss her, I'm really sad and I have a history of severe depression and anxiety, which has started again now. I'm trying not to be anxious and stressed, and I'm trying to take one day at a time. But 10 years ago I was so ill I lost my job, my home, friends, everything. I applied for ESA and they didn't believe I was ill and I was treated so badly I tried to kill myself. I just wanted some help and support until I could get back on my feet, but they made me feel so bad that I've never really recovered. I was treated like a liar and I don't lie. I felt worthless and hopeless and I'm really scared of the benefits system now.
My Carer's Allowance ends next month and I have to apply for Universal Credit. I keep reading horror stories about Universal Credit on the BBC News and I don't know how I'm going to cope. Apparentely you have to wait several weeks before your payment comes through, but I have rent and bills to pay and food to buy. It's really worrying me. My GP is going to give me a sick note so I can apply for ESA through Universal Credit, but I'm fairly sure I'll be found fit for work. Even though, on a really good day, I struggle to be around other people and I get severe sensory and information overload. Caring for Mom was really hard but I only had to see my Mom and focus on looking after her, not all the overload and anxiety of "normal" life.
I have a lovely boyfriend and he is trying to support me, but he is ill himself. He has M.E. and is exhausted and in constant pain, He also has undiagnosed autism and ADHD. He isn't getting any support from anybody except me. His GP gives him tablets to help his pain and anxiety, but that is all really. He won't give him a fit note for ESA so he has to look for work. So my boyfriend is being kind but can't do much to support me in a practical way.
I applied for PIP recently. Autism West Midlands referred me to a company who help people with autism apply for benefits. A man helped me fill in the form and can go to assessments with me (well we've requested a home visit but it may not happen). But he said the assessors don't have much understanding of autism and I may not get PIP or ESA. He said that because I look neat and tidy - even though I think I look terrible now, and I'm screaming inside. But nobody can see how I feel inside. My GP has referred me to Birmingham Healthy Minds for talking therapy, but the company who helped me fill in my PIP form said Birmingham Healthy Minds often won't help people with autism as they don't have autism training, and they may turn me away.
I just miss my Mom and want to grieve for her but I'm so stressed and getting more and more depressed every day. Even though I have my boyfriend, I feel so alone and everything feels too difficult right now. Does anyone have any advice on what I could do next, to help me in a practical way, or to feel less anxious or depressed? I'd really appreciate any help. Sorry for the long post :-(
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
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.
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.