When my mum turned 60 in June 2012, Dad bought her a lovely, shiny brand new car.
It was Mum’s kind of car, something zippy that she could get around easily in. Then Mum was diagnosed with Alzheimer’s disease around Christmas time of the same year.
It changed Mum’s world, Dad’s, my sister’s, brother’s and my life forever.
We have always been a close-knit family, enjoying each other’s company and seeing each other regularly. Mum was wonderful. I could tell her anything and rather than being angry, she would talk with me, think about the situation and then try to offer me the most valuable advice, while gently reminding me if I’d strayed too far from the hopes and expectations she held for me.
I reeled for the longest time.
My eldest had just begun school and in a fog of grief, I found it difficult to make friends with the other mums there and felt pained to see some of them arrive with their own mothers, delighted to share the beginning of a new chapter of their child’s life with them.
I didn’t know how to be around Mum anymore and I hated that a diagnosis had instantly altered the dynamics of our relationship.
Mum didn’t want to talk about her illness, but I felt it like the elephant in the room every time I saw her. I imagined the rest of the family would pull together to get through, but found that my sister’s and brother’s way of dealing with it was not to discuss it it was just too painful. I am a talker, I desperately wanted to talk with them, but respected that they couldn’t discuss it for more than a minute or so at a time.
There was fear too, with me all of the time. The fear that I would suffer the same awful fate as my dear mum and that I would in turn pass it on to one of my daughters. I began looking at the possibility that I wouldn’t have a long life to look forward to. That I may not see my daughters become adults and begin families of their own if that’s what they chose. That my husband would be stuck looking after me as my mind and personality vacated the premises.
Sometimes, the fear would grip me while I was out carrying on with my normal routine and I’d envy the people around me who seemed happy and carefree and think about who among them had great genes and could reasonably expect to live a long, healthy life. I lost count of the number of nights I woke and cried, worried, grieved and panicked.
I began to see potential catastrophe all around. Our family was previously untouched by either tragedy or ill health but the rug had been pulled from under me and I imagined everything that could go wrong all of the time. I would see one of my daughters playing on something high or riding their bike and imagine them falling and hitting their head badly and then I’d go further and imagine the trip to the hospital and the fear and anguish we would all feel. I’d imagine them being knocked over in the playground at school or crossing the road ahead of me and being struck by a car. I became focused on the worst-case scenario.
I began to snap at my children and husband more or I would just fall into a depression about the situation and go around on autopilot. I missed my mum, I felt so sad for my mum, I wondered what her every day was like, was she constantly scared? Did she realise what was happening? Did she sob and sob until her body ached too?
In desperation, I finally went to see my GP, who placed me on a mental health plan and so far I’ve had one visit with a psychologist. It was a fantastic move. I was given some very useful strategies and a chance to let it all out and have a cleansing big old cry. I am doing a great deal better than I was.
Mum has lost friends since being diagnosed. I think people just find it too awkward and confronting to be around this disease. Mum was always the kindest person I knew, never a bad word about anyone or a grumble about anything in her life. In a way, this is her saviour. She is still a kind-hearted soul and still a pleasure to be around, aside from the sadness we all feel when faced with what is happening to her. She will not be the patient that lashes out and that people want to avoid. She deserved for her friends to all stick by her at this time, some have.
The saddest part is that the ability to properly communicate is leaving Mum but her ability to absorb and understand the conversation around her is not deteriorating at the same pace, so she knows what’s going on but is often excluded from conversations and decisions. Seeing this occur breaks my heart.
If you happen to see someone as you go about your day and you suspect they may suffer some form of dementia, don’t ignore them or discount them. Remember that they may be able to take in a whole lot more than what they’re able to give out. Give them a smile or a wave, anything to let them know that even though their brain’s wiring is being blocked and scrambled and things feel completely at odds and frightening as hell, they are valued and they are seen.
Mum only drove that shiny little car a handful of times before losing her confidence in her ability to do so. Every time I see the same type of car on the road, I think of the woman who should be behind the wheel, ducking over to my house or one of her other children, popping to the shops or zipping along on her way to an art gallery or a coffee with a dear friend, even carrying a beloved grandchild in a borrowed car seat in the back.