It feels like a death; a slow, progressive removal from life. I grieve the loss, but she is still there. I can see her ageing body and mind disintegrating before my eyes. The early signs were there, some subtle and vague, others pronounced – progressive memory loss, confusion about money and medication, difficulty with decisions, reliance and dependence on individuals, loss of cognitive function and a slow withdrawal from social interaction.
The diagnosis of dementia is sad for all concerned; not only for the individual, but for the family who must live with this distressing diagnosis. Dementia affects a person’s thinking, behaviour and the ability to perform everyday tasks. My mother has dementia. She is 94 years of age, and until two years ago was doing well, living a fairly independent life, well supported by family and in-home care.
However, the change in her was quick, from total capacity to this little creature, unsure of her whereabouts, asking where she is and at times, reduced to a pitiful child, wailing soulfully, needing help and reassurance. Most days, she knows my name, she smiles when she sees me, is pleased, says hello, but she does not hold a conversation. She responds to my questions, talks, and says words and sentences, but very rarely starts a conversation. This disease has taken my mum away and left me with crumbs and scrapings of who she was.
I long for the intellectual chats, the knowledge she carefully stored within her memory. Her recall of the television news and events. Her diligent reading of the daily newspaper and solving the word puzzles. Her retellings of happenings in her favourite television serial The Bold and the Beautiful. Her love and interest for her grandchildren. Her remembering and follow up on what we talked about the previous week. Her enquiry about my health, and how I am doing, my husband, my son, and his family. I miss who she was, there was no other person like her. She was not perfect. She could be sarcastic, and sometimes mean, but I could work with that, I knew that person, and had learned to make the best of our relationship. I miss her blatant and somewhat amusing habits, the gentle manipulation, the overt tactics employed to get her own way. The flirty smiles and attention she gave my husband, tools she cannot recall or use now.
In its place, is this tiny bird-like person, who smiles when she is not sure, pretends she understands what you are saying, and nods in agreement with everything. No opinion of her own, no thoughts of her own. There is little dialogue exchanged; she is mostly cheery and does not question. Her days are mundane, filled with regimented aged-care events, toileting, showering, medications, meals, sitting in front of a television or being placed at a window view. Occasionally she takes part in seated geriatric exercises or joins a group to play bingo – when she can remember how to play. Sometimes she sits in a group with volunteers who help residents make simple art and craft pieces.
She does not want for much other than kindness and care and I am thankful for the care given at her residential facility. I visit regularly. I take several deep breaths as I enter the corridor that winds to her room, never sure how the visit or connection will go. Will mum be well, happy, smiling, startled, sad, sleeping? She does love a laugh and I try hard to say something that will make her laugh. This is my saving grace, and her laughing response my joy. It is what keeps me together, hides the sadness, regret, and the tears that well-up beneath my façade. I think it fortunate Mum does not miss the person she was, and hopefully is not fully cognisant of her life now. But I miss that person, I grieve for her and the past, her imperfections, her love, her kindness, her sometimes meanness and mostly our intelligent exchanges.
*Since publishing this blog, Lynne’s mother has peacefully passed.*