Two and a half years ago, I lost my mum. The year before was tough - she was in hospital on and off for most of year before. The hospital still had covid restrictions and visiting was severely restricted. She couldn’t use her phone/I don’t think she understood the restrictions. I think she had frontal temporal dementia as her character completely changed and she was very resentful to my dad and I by the end/the relationship had broken down. Just before Xmas, I found a local care home for my dad as he lived 2 hours away/wasn’t coping. We had 2 weeks of him trialing the home before he collapsed and it was lovely for my daughter and I to see him easily/regularly. I then got a call he had been rushed to resus with heart/kidney failure. The hospital put him on end of life care for a couple of weeks before he was transferred to the hospice. He died at the end of January.
My daughter is 12 and we are waiting for an autism assessment for her. She was badly affected by my mum’s death - I had to be away a lot, she saw some distressing things she shouldn’t have seen and she saw kind, cuddly granny completely change character. She can’t cope with any type of hospital/hospice environment. She managed to see my dad in the hospital once but it took a long time, a couple of panic attacks and a nosebleed just to get her as far as the door to his room for a couple of minutes. We gave her a choice not to go through that again. She was very close to my dad and she is finding his death hard to deal with. About a week before he died, she started having issues swallowing food. She is spitting out food/holding it in her mouth. I am finding this triggering to watch - one of the hardest things to watch with my dad in the hospice was when he started pocketing food/having problems swallowing. The logical bit of my brain knows that my dad and my daughter not swallowing food aren’t connected (my daughter never saw my dad pocket food) but I am really struggling to watch this without getting upset in front of her. My daughter has also started eating like a younger child (using her hands rather than cutlery/taking very small bites) and says she wants to be little again so she’d still have her grandparents. I don’t know how to juggle her grief with mine.
Thank you for sharing this with us, @Ali8. It sounds so hard for you both; you’ve been through an awful lot.
I know a lot of our members with children who are grieving have found Winston’s Wish really helpful. Winston’s Wish provides grief and bereavement support for children and young people (up to 25) after the death of someone important. They have a helpline that you can call free on 08088 020 021 between 8am-8pm on weekdays. They also have a live chat feature on their website.
Autism UK also have a guide on supporting autistic children through bereavement. You can read it here.
Has your daughter had any counselling? If not, it may be something to chat to her GP about. You might want to explore counselling for yourself, too. We offer free online bereavement counselling which is held via video chat. You can find out more on our website.
I’m sure someone will be along to share their thoughts, too, but I just wanted to let you know that you have been heard and are not alone.
Take care,
Seaneen