“My mother, Nancy, passed away at the end of October 2019, after living with mixed dementia for about six years. Although she was in a care home for the last 12 months of her life, she’d been living with us for the previous five years and her death inevitably left a big hole.
In many ways, I’d already had periods of grieving, in some sense of the word, at various points over those years – when she suffered sharp deteriorations in her capabilities, for example, and again when she had to move into a care home. It was like repeatedly losing bits of my mother.
I learned afterwards that this was a completely normal response and that suffering this type of grieving doesn’t mean that, ultimately, you grieve any less when the person you love actually dies. Although it was surprising how some friends seemed to think that might be case. And how some thought that I would simply be relieved that she had gone, because she had dementia and ‘wasn’t really my mother anymore’. That was hard.
It was Linda, my Admiral Nurse, who was with me at my mother’s bedside after she passed away. It was a small thing but giving me that time was much appreciated. She also went and found me some scissors and a little bag so that I could cut a lock of my mother’s hair to keep, which was kind. When she left, she told me that I was more than welcome to call and talk to her if I wanted or needed support. She, more than anyone, was able to understand how I was feeling.
I don’t think we appreciate the process of grief or talk about it enough, so most of us are ignorant about how it can affect us. I was completely unprepared. After mum died, I went through the motions of the cremation, memorial, dealing with probate etc and thought I was ok but then, four months later, I suddenly hit a wall. I found myself unable to cope with day to day life. I had panic attacks and just wanted to run away and be alone. I honestly thought that I was going mad, but luckily, was able to access a counsellor who explained to me that these things were all symptoms of grief. Even my urge to run away was just an animal-like need to hide and lick my wounds.
It was such a relief to understand this and essentially be given permission to look after myself a bit better. I did little things to nurture myself, such as yoga. I also found writing a journal helped me process everything that happened, and soon found I was on a much more even keel. I still miss my mother, of course, but I can now enjoy the memories of the good times far more, and put the more difficult things behind me.
I have also found doing what I can to support Dementia UK, such as writing little pieces like this, has been really beneficial for me. If talking about my mother’s journey with dementia, and my experiences as a carer, helps anyone in some small way, or encourages people to donate what they can to support the great work that Dementia UK does, then I feel it has turned a challenging experience into a far more positive one.”
Grief, bereavement and loss leaflet
Read the advice from our Admiral Nurses on dealing with grief, bereavement and loss