Dementia and living grief

I find walking is a great way to bring peace to the soul and inspiration to the mind. Walking in the rain this morning triggered memories of my childhood.

Soggy English summers spent on the canals, dad at the tiller getting soaked through and mum valiantly trying to keep us kids entertained in the confines of a 46-foot long narrowboat. It brings a smile to my face and a warmth to my heart remembering the old days. 

Quickly, reality hits as I think of mum who is now late-stage with dementia. I look around on this tempestuous autumn morning, the leaves falling off the trees, most of them now bare. I am reminded of mum’s mind and dementia.

Day by day, her brain and cognitive functions decrease. She is like a tree whose leaves are falling off one by one.

But, the difference between dementia and nature is, with dementia, the leaves will not grow back again in the spring.

Mum did not recognise me

I will never forget the first time mum did not recognise me. We were upstairs in her house, she looked at me with suspicion, which then turned to fear and then confusion. The emotions seemed to play out on her face in slow motion and then it happened. Mum had no idea who I was.

I reached out to take her hand to steady her on her feet 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! My heart was pounding, my hands went clammy and I fought to stop the tears because I did not want to frighten mum more than she was in that moment.

Slowly, I stepped forwards and said, “Mum, it's Carrie, your daughter.”

I was hoping that she would remember who I was and that my mum still recognised me! She looked at me defiantly and said, “No! You are not!”

I do not think I have the words to explain how wretched I felt in this moment. 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 knew that mum 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.

Living grief

Once mum was safely back with dad, I found a private space to let out my tears. They were different tears. 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 she was not coming back.

I was experiencing 'living grief' - grieving for the loss of mum, even though she is still alive.

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 caring for them.

It feels like a long dark tunnel you go into without realising and when you do, the light at the end of the tunnel is not one you want to reach but it is inevitable.

How can dementia counselling help?

Grief is painful and can feel so unjust when living with a loved one who has dementia. Living with and caring for a loved one who has dementia may leave you with feelings of isolation and loneliness. If the feelings of sadness and loss are suppressed, they may become overwhelming and lead to anxiety, depression, grief and more.

Talking with a counsellor will offer a space to talk confidentially, where they will listen and help steer you through. I am a counsellor and carer and understand how the feelings of fear and apprehension may weigh heavily. Talking through your feelings in a safe and confidential space may help.

If you are looking for support, talking to a counsellor will help you work through what can be an extraordinarily difficult time.