When I was 22, I lost mother I had always known. She was nearly 58 years old at the time and suffered a stroke which was the result of complications related to diabetes. Overnight her personality changed, her memory was lost and her ability to be a mother gone. Although she recognised me, our relationship was different. At the time, I was emotionally immature and dependent on her. My own identity was not yet fully developed, and it was as if I had lost myself. Not only had her stroke changed her life, but mine as well and everyone close to her.
She was now a shell which looked like my mother, but her behaviour was like someone I did not know: an imposter in my mother’s body. Something had changed within her, and no amount of effort could bring her back. She could no longer remember significant events from the previous 20 or so years, but she could remember the day of her marriage and what had happened earlier in her life. A section of her life was lost to her, and she never fully recovered it.
Her personality changed, too. Mum had rarely cried, but afterwards I sat many nights with her at hospital as she wept openly. Then, she changed again to become a giggly, immature person who took no responsibility for her actions. She was less interested in other’s emotions and focussed mostly on herself. She lost the ability to withhold her feelings and thoughts, often behaving inappropriately. Instead of considering the impact of her actions on others, she spoke without thought. In one instance, she gave a book about sex to a good church-going woman. This was given back to me in a brown paper bag!
This is the tragedy of dementia and Alzheimer’s disease, the loss of someone you love without losing them physically. It is strange to recognise someone, but not know the person they have become. For me, the hardest thing to deal with is the misunderstanding of others. Experience is the only way to grasp dementia’s life-changing impact on the lives of those who are close.
It is the grief of life as it was, and the loss of the person you love although they are still with you bodily. For many people it also means responsibility for someone to whom they no longer feel close and no longer know.
For anyone who is going through this, your grief is real, and I know it is hard.
In love, Jenny
