Her name’s AG and she has Alzheimer’s.
She’s also my 87-year-old mom.
I’ve blogged about my strained relationship with her and my discomfort when around the elderly. I know that probably makes me Public Enemy #1. Certainly, it isn’t something I bandy around like a badge of honour. For wasn’t it one of God’s Ten Commandments to honour our parents?
I’m clearly a law-breaker then!
Yet it’s one thing to realise my failing and seek daily God’s forgiveness. It’s quite another when my mom’s Alzheimer’s feels like a constant reminder of what might await me in my own twilight years. As I’m well past 50 now, those years aren’t exactly far away!
Maybe that’s why I find myself ‘avoiding’ my mom whenever possible. It’s almost as if her very presence reminds me of my mortality. Or worse, the decreasing ability to live a dignified and independent life unaided when I’m old and decrepit. And possibly saddled with Alzheimer’s as well.
So, to borrow a modern-day term from social media, best I “block” her daily in order to delude myself into a state of oblivion and ignorance.
Easier said than done since she’s been living with me and my family for three years now.
Today is World Alzheimer’s Day. In fact the whole month has been designated World Alzheimer’s Month, with the same theme as the one a year ago: “Know Dementia, Know Alzheimer’s”.
So let’s talk about Alzheimer’s. But for that, we need to first talk about dementia.
Dementia is an umbrella term for neurological conditions, including Alzheimer’s, that lead to a drop in cognitive function and affect daily activities. Contrary to popular opinion, dementia is not a natural consequence of ageing. However, older people and those with chronic diseases are at higher risk of developing it.
In my country, one in 10 people aged 60 and older has dementia, according to a 2019 report from the Ministry of Health. The National Neuroscience Institute also reports an increase in cases of early or young onset dementia, a term used when people below 65 develop it.
People like (gulp) me!
In other words, it is a real societal issue that warrants more awareness and attention now than ever before. In fact, one study suggests that between now and 2050, the number of dementia patients in the world will triple!
My mom’s Alzheimer’s
In my mom’s case, her Alzheimer’s has meant a few significant and, if medical experts are right, permanent changes.
Changes that unfortunately still have room to further degenerate in the coming years.
First, she’s no longer chatty, something she was very adept at for the first 80 or so years of her life. These days if no one talks to her or engages her, it’s quite possible her presence might be completely forgotten. And even if you try, her answers are typically mono-syllabic, discouraging further conversation.
Many times, you’ll have to use simple words, repeat yourself and speak very loudly since she’s also hard of hearing.
Secondly, she has no awareness of what day, week, month or year she’s in. She recalls no birthdays or special holidays. It’s as though her grasp of time had, well, timed out. And this is despite the fact she has a day-by-day display calendar near her bed that she will see first thing in the morning when she awakes.
Thirdly, when not at a local dementia daycare centre Monday to Friday, she is content to just sit at home and colour picture books. As she has mobility issues, someone at home must be on hand to guide her on a walker to the toilet every two hours or so. Otherwise her adult diapers might soak through (yes she’s also incontinent).
Although thankfully she’s still able to manage her toilette for now, I’m always wondering when even that very basic selfcare routine might recede.
I could go on with several other aspects how Alzheimer’s has robbed my mom of a dignified end-of-life experience. But I’ll stop here. To go on feels like I’m an ungrateful tattle-tale washing a relative’s dirty linen in public. Or some fault-finding school principal, laundry-listing all the negatives about my charges.
(For reasons I don’t quite know myself, I actually keep a running list of things that my mom no longer does well, or that she needs help doing! Perhaps it’s to be passed on to my children for when their daddy succumbs to old age?)
Can someone like my mom have a dignified end?
Inspite of my predilections, having my mom live with us has been a way for us to restore some much-needed routine and stability for her. And hopefully some dignity too in these her twilight years.
While I’m most certainly the least equipped to care for her — both in terms of her daily physical and mental needs — she does live under my roof. This makes me her primary caregiver when it comes to any matters related to her health and well-being.
At least on paper.
This also means I’m the first that relevant health and dementia agencies would contact as and when the need arises.
And most likely the main person to manage her affairs when her time comes.
I’ll admit it’s not a role I’m comfortable with. Even though I recognise that, like it or not, I’m the one who will have to undertake it.
But in an article I read in the local dailies today, I’m reminded I mustn’t rob my mom of her independence, dignity and humanity despite her condition. In fact, I must continue to see her as a person; that her life story and personality matter.
Truth is, I need help with how to. Given I’ve not exactly been the kindest and most filial to her. Even my kids seem far better at putting a smile on her face than I ever remember being able to.
As I ponder this, one thought invariably comes to mind.
Perhaps if nothing else, her still-daily presence in my life that reminds me of my mortality should serve as an impetus for me to do better even as I struggle to figure out how to.
For one day in the not-too-distant future, it might be my turn to need that kind of respect and care from my own children.