The doctor announced nonchalantly that dad had Alzheimer’s. As if it weren'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 very well versed in all things geopolitical. He was very well read too. But 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 a question 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 here, but he could no longer be my rock, the one I could ask advice to. Now the tables had turned and he needed my help.
I had heard of Alzheimer’s, and like everyone else, had all these preconceived ideas about it, and it didn’t correspond to Dad. The general perception of a person with Alzheimer’s is 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.
But I know this picture is not accurate. Yes dad forgets his words, forgets names of people and places, confuses childhood events with today’s. He forgot a lot of everyday vocabulary, making communicating a difficult thing. But talking 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. As if his brain was opening the wrong drawer, and timelines have become blurred.
But 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 grand daughters 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, and it took me a long time to fully take it in and get used to the “new” dad. Since the sentences are often difficult to understand, I have learned to listen to the tone of voice, the intonations, and when I am there, observe the body language and non-verbal cues. I have learned to always try to understand the underlying feelings of the words, rather that the established meaning. He always responds well to affection and good intentions. The general guideline is: you have to make sure that your loved one with dementia knows he/she is still loved, because no matter what illness they are suffering from, it’s still the same person inside. It’s just that this person has trouble making herself known and understood.
Today we live longer and it’s likely that many of us with aged parents will, or are confronted with dementia. I have found this website to be very useful to transition and learn appropriate strategies to deal with the changes. It definitely has some very good insight.