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"You have to allow yourself to feel whatever you're feeling"

Emma reflects on her grief journey after the death of her mother Nancy, who had dementia.

Emma and her mum Nancy at Emma's graduation

Emma and her mum Nancy at Emma’s graduation

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 that this was a completely normal response and suffering this type of grieving doesn’t mean that, ultimately, you grieve any less when the person you love actually dies.   

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. When my mum did pass away, I was completely unprepared.

I went through the motions of the cremation, memorial, dealing with probate and so on 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 was able to access a counsellor who explained that these were symptoms of grief. It was such a relief to understand that what I was going through was normal, and essentially be given permission to look after myself a bit better. I did little things to nurture myself, such as yoga. I discovered 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. 

Linda understood how I was feeling 

Linda, my Admiral Nurse, came to sit with me at my mother’s bedside after she passed away. She talked to me about my Mum, and I felt like I was sitting next to a supportive friend. 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. 

The first Christmas without my mum 

The first Christmas without Mum was hard. It was only eight weeks after she died, so we were still feeling quite raw. In the build–up to Christmas I would sometimes forget that she was no longer with us. I’d see something nice in the shops and reach out to buy it for her – then reality would bite, and I’d find myself in tears. It really hit home when we didn’t hang up her Christmas stocking at the fireplace with the others. 

However, I must admit, I also had some moments of relief that I didn’t have to care for her on top of everything else, and that I didn’t have to answer the same question over and over again. Of course, those moments were swiftly followed by intense guilt for thinking such things – but I tried to be gentle with myself. I think you have to allow yourself to feel whatever it is that you are feeling and take some time out to help yourself process those feelings. 

That said, I also found it helpful to remember one of my mum’s favourite sayings: “No one likes to see a miserable face!” She would always stick on a smile and find something to laugh about, even in tough times, and it’s amazing how even a slightly forced smile or laugh helps to lift the spirits. 

Remember a star 

I always think of Mum on Christmas Day sat with a glass of champagne, with all the family around her. I’m so grateful to have had the support of an Admiral Nurse but not all of us are so fortunate and there needs to be more of them. Join me in Remembering a Star for Dementia UK so more families like mine can have the life-changing support of an Admiral Nurse.