The doctor announced nonchalantly that Dad had Alzheimer’s. And as if it wasn’t enough, it was already at an advanced stage. How could I not have known?
A couple of years ago, he said he didn’t know where Malaysia was when I told him I was flying to Paris via Kuala Lumpur. I remember being surprised, considering Dad was well read and familiar with geography yet, when we don’t want to see something, we find all kinds of excuses.
I sat in the doctor’s office, stunned, taking it all in, unable to think of questions to ask. The doctor said, “You see, it’s no wonder you didn’t notice. Alzheimer’s is much more difficult to diagnose with intelligent people. They realise they’re losing their capacities and always find ways to cover it up”. Dad did just that. With his well-known sense of humour and ability to laugh at himself, we let everything go and didn’t see the elephant in the room. I was shocked. I was sad. I didn’t want to believe it. Dad was, simultaneously, here and not here; he could no longer be my rock, the one I could ask advice from.
The tables had turned. He needed my help.
I knew of Alzheimer’s, and like everyone else, I had all these preconceived ideas about it, yet Dad didn’t fit any of those. The general perception of a person with Alzheimer’s can be of someone who is deluded, who doesn’t make sense, who has lost touch with reality, doesn’t know where they are, and basically speaks gibberish. The general term would be “crazy”. Decades ago they were locked up in asylums, and the evolution of the vocabulary to designate this state of affairs has only recently evolved from “craziness” to “dementia”.
But people’s perception hasn’t shifted yet, or so it seems.
I know these perceptions are not accurate. Yes, Dad forgets his words, forgets names of people and places, confuses childhood events with today. He has forgotten a lot of everyday vocabulary, making communication difficult. But as I continue to talk to him, I realise he knows what he wants to say; he has the capacity to reason and think rationally, but the words that come out are not always the ones he is looking for. It’s as if his brain was opening the wrong drawer, and timelines have become blurred.
However, there are moments of clarity, like when I call he recognises my voice and tells me he likes hearing me. I can hear the happiness in his voice. He loves to talk to his granddaughters on the phone. When I told him, I was going to a yoga retreat in Bali last May, he encouraged me and said, “Take as many opportunities like this in life; otherwise you’ll regret it”. Perhaps he has some regrets of his own.
It’s been a little over a year now. His dementia has evolved, it has taken a long time to fully come to terms with it and get used to this “new” Dad. Since the sentences are often difficult to understand, I have learned to listen to the tone and intonations of his voice. When I am there, I observe his body language and non-verbal cues. I have learned to always try to understand the underlying feelings of the words, rather than the established meaning.
He always responds well to affection and good intentions.
As I see it from my experience, the general guideline is: you have to make sure that your loved one with dementia knows they are still loved, because no matter what illness they are suffering from, they are still the same person inside. It’s just this person has trouble making themselves known and understood.
Today we live longer and it’s likely that many of us with aged parents are and will be confronted with this illness. I have found this website to be very useful and insightful to transition and learn appropriate strategies to deal with the changes.
See you next month.