Why am I doing this?

This is my first foray into the world of blogging so if you do come across this, please be gentle with me.

Firstly, let me explain the title of my blog – She’s Still my Mum. Two years ago, almost to the day, my mother was diagnosed with Alzheimer’s Disease. We had known something was wrong for some time but it took a great deal of perseverance from my sister and I to achieve the diagnosis. “Achieve” seems an inappropriate term in this context. Living with dementia, either as a sufferer or a carer, gives little sense of achievement believe me. Yet, having the medical professionals acknowledge that Mum wasn’t merely suffering from the ageing process seemed a macarbre victory of sorts at the time.

The diagnosis came about a fortnight after the death of my father who had lost a short but courageous battle with Non-Hodgkins Lymphoma. Shattering doesn’t begin to describe the impact on our family. We are a close family, really close. We had come through testing times in the past, times which had cemented the essential family bonds. These bonds were significant as we came to terms with both my father’s death and my mother’s diagnosis. Initially, Mum  coped remarkably well. She was very open with friends about the diagnosis and although she was hugely frustrated that she was suddenly so much more reliant on family and friends – I had taken away her driving license – she remained positive for the most part. She was prescribed Aricept and her medication appeared to hold the worst aspects of dementia at bay. In fact, I would say that Mum handled the diagnosis better than I did. Even if the signs of dementia were dimmed by drugs, those closest to Mum seemed on constant high alert for signs of decline.

From talking to other relatives dealing with the full force of dementia, it seems that we rarely feel as if we are coping well or doing enough. That sense of impotence comes with the territory. I am fortunate in that I have wonderful support from my wife and I know that my closest friends  are always there for me. My sister lives close to Mum and offers more daily care to her than I can. In that sense, I am lucky. Still, I find watching a loved one being slowly devoured by dementia a uniquely lonely experience.

But back to Mum, for this is really about her and not me. For about 18 months after diagnosis, things were stable. Mum recognized those significant first anniversaries which follow the deaths of loved ones – family birthdays, the first Christmas, the first anniversary of the loss. Then, last autumn, we began to notice changes, and not for the better. Operating anything technical around the house had long presented a challenge to Mum but now switching on the television defeated her on a daily basis. I should add, in her defence, that my father had contrived to buy the world’s most complicated television about a year before he died so the odds were stacked against Mum from the start. This was only a small symptom of the change though. I received occasional ‘phone calls in the middle of the night with Mum obviously distressed: “I don’t know what I should be doing. Please help me.” To hear those words from someone who has been a lifelong source of…. I have to stop here because that last sentence invited me to sum up what my mother has meant to me over 46 and a half years. And I’m not sure I can do it justice in mere words. I know I was blessed with two parents who offered unconditional love, never-ending support and the finest foundation imaginable on which to build my life. In that context, to hear Mum ask for help in such a pained manner felt as if someone or something was hacking away at part of me. If that sounds slightly melodramatic, I make no apology. It’s how I felt then and how I feel now when I remember those calls.

Mum is still living in her own home and there are still engaging, articulate conversations, those these are fewer now. Mum pays for care visits from times a day. Without them, she might not eat, drink or wash. With them, the personal care remains a challenge. The Mum who was there for me at every step of the way as I forged my own life, that Mum is rarely there these days. She still knows me and when I hug her, I know from the way she is reluctant to let go, that the essential bond between us remains. But I also know from that reluctance that she is frightened. She would never betray her fear and that stoicism is one part of the old Mum still there. Though never one to splash out on new clothes, Mum always liked to look smart in company. Her house was always tidy. Her awareness of those standards she set herself is gone.

Dementia is surely the cruellest of diseases. Who really knows what’s it’s likely live with it? For those whose loved ones are afflicted, it can seem like a long drawn-out mourning process. Today, my mother is not the person I grew up with; the person to whom I owe so much; the person to whom I could reveal my deepest feelings. Today, a simple conversation can sometimes seem beyond us. But she’s still my Mum.


About duncancajones

I am a coach and mentor, a charity trustee and a journalist. Thanks for taking the time to visit my blog.
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