Mum did not Recognise me

I will never forget the first time Mum did not recognise me. I was upstairs in her house and she appeared at the top of the stairs and stared at me. She looked at me with suspicion, which turned to fear and then confusion. The emotions played out on her face in slow motion to me because what I have feared would happen one day, was happening! Mum had no idea who I was! I reached out to take her hand to steady her on her feet as she was standing preciously at the top of the stairs and said,

“Mum, are you OK?”

Her eyes wide and staring, she pushed my hand away and shouted

“NO! Stop!”

She was afraid because to her I was a stranger in the house! My heart smashed into a million pieces and the physical response in my body was like a jolt of utter sadness as it hit me like a train! I felt my heart pounding and the hackles on the back of my head as I fought to stop the tears, which were fit to burst out of me. I did not want to frighten Mum anymore than she was in that moment. Slowly I stepped forwards and said

“Mum, it is Carrie, your daughter”

I was hoping that this would make her remember who I was and that my Mum still recognised me! She looked at me curiously and said

“No! You are not Carrie!”

I do not think I have the words to explain how wretched this made me feel. The little girl inside me wanted to slump to the floor and sob utter sadness at the loss of her Mummy and yet the adult in me standing in front of Mum, knew that she needed me so much more than I needed her to recognise me. Dementia has robbed her of her memory and cognitive ability to be my ‘Mum’ and now she needs us to be there for her.

I looked at her confused face and gently took her hand.

“Jane, shall we go downstairs and find John and the others?”

“Oh yes what a good idea”

Instantly the confusion, fear and suspicion were forgotten for Mum, we were in the moment and going to join the others. I helped her down the stairs and she chatted to me as if I was a stranger. She was lovely and I responded to her chatter, which is what she needed, all the time desperately holding my broken heart together and hiding my sadness. Once she was with Dad (John), I went back upstairs and found a quiet space to let out my tears. I remember the tears, they were different, they were hot, heavy and I really do not think I have cried like that before. I was grieving for Mum who I now realised was gone to Dementia and there was no way back. This was 2 years ago and she is still with us but has not known who we are for at least 8 months now. Lockdown has made her Vascular Dementia progress faster than we anticipated and each time we see her she has gone deeper into her own world. It breaks my heart every time.

Losing a loved one to Dementia is a slow and agonising process and the stages of cognitive dysfunction and deterioration are horrid. There are many stages of anger, frustration and emotional pain for the person who has Dementia and for those of us caring for them.

My Mum is still alive but I miss her so much. She has gone and dementia has left us with her shell to love until dementia takes her completely. I wonder if J.K Rowling’s Dementors are in part the pain and torture dementia gives to the carers supporting and living with a loved one with dementia.

Today, thinking about Mum as I write this I am feeling the sadness again of that day. As a family we support Dad who is caring for Mum at home and we try to remember Mum as the woman she was before Dementia, a vibrant, loving, happy woman, Mum, Granny and Wife. I miss you Mum!

Written by Caroline at Caroline Ellison Counselling – this is my experience and these are my opinions. Carpe Diem.