How can I celebrate Mother’s Day when my mum has dementia?

inktuition dementia mother's day copy

Mother’s Day hasn’t been the same to me for the last four years. Yes, I have a mother who’s alive. But no, she hasn’t known I exist for the past handful of Mothering Sundays.

My mother is 68 years old. She has Pick’s Disease, an aggressive form of dementia. The illness has had her in its vicious and unrelenting grip for at least 10 years.

Unlike other gradual forms of dementia that strike when the person is older, my mother’s strain came early and was swift and debilitating. Four years ago she knew me, she came on holiday with me, and she looked like a ‘normal’, healthy woman in her mid-60s. Yes, she was conscious that she was losing her memory. But she could still walk, talk, feed herself and go to the toilet and have a bath on her own. She could even dress herself and order herself a cup of tea – though money could be an issue, as she’d be inclined to forget where it was or just hand over far more cash than was required.

In the space of four years, she degenerated from a functioning human being to a bedridden soul who has the cognitive and physical abilities of a six-month-old baby. She can’t sit up. She can’t walk.  She can’t tie her shoelaces. And she can’t count. She doesn’t know her own name. And she certainly doesn’t know who the strange person is sitting beside her bed. Just as a child learns new skills, she has gradually been stripped of hers. As I am stripped of hope.

It’s been about two and a half years since she last recognised me. The last time she was able to talk coherently, she was fighting with her carer who was trying to get her into the car. And when I said, hey, it’s your daughter, come with me, she replied with much authority: “I don’t have any children!” At that stage she was regressing into her very early years, the way people with dementia do. And I had to hold the hurt of rejection without being able to show it.

So, the poor soul into whose eyes I look for some kind of flicker of remembrance remained lost and on the tips of her own netherworld today. Just as I remain lost in that space with a mother in body, and yet without a mother in mind.

What gets me through Mother’s Day is knowing that, somehow, I still have a mother in spirit.