My mother has been diagnosed with dementia almost 10 years now. In the beginning, the word dementia was so scary, our anxiety levels were high and we were well advised to just enjoy the moments.
Now I appreciate the wisdom of that advice. The downward spirals creep in surreptitiously, almost unnoticed. Year by year, we only realise the changes that have happened when we look at old photographs. Sometimes however, change occurs in weeks or days.
One day Mom is happy, smiling and responsive. The next day she is not. At first we think she is just having a bad day, or an underlying infection. But the bad days continue until we have to face up to the fact that this is the new normal.
The simple question “are you okay?” now elicits a no as often as a yes. Another question “do you have pain?” elicits a yes as much as a no. There are equally ambiguous responses to “are you happy”? She changes her answers from one minute to the next. I’ve long given up guessing what she’s thinking but now I’m no longer sure how she’s feeling.
But still I try to get an answer. I tell her who she is, and I reassure her that she will be looked after. Her gaze is puzzled. Like me, she’s wondering what’s going on. If I can get a smile, albeit a slightly uncertain one, I consider it a victory.
Many years ago, my mother was brought to a neurologist because we suspected something wasn’t quite right. She seemed a little forgetful, but more importantly, we suspected she was making things up to cover up her memory loss. She also seemed “simple”, as opposed to being complex. Life was pared down, simplified, broken down to concrete, discrete ideas.
I am grateful to the neurologist for his kindness and the gentle way he explained the diagnosis. How he encouraged us to enrol her in daycare, so that her days would be richer. How he listened when we described her response to the medications he put her on.
He accompanied us on the path over the years as Mom gradually got worse. He was realistic but never made us feel hopeless.
Over the years since the diagnosis, I think we coped quite well. Yet yesterday was the first time Mom looked at me blankly when I asked her a question as though trying to remember who I was. Such a long pause. Then I asked her if she knew who she was. She smiled and started to tell me but couldn’t say her own name.
Is this it? That stage of dementia that every recognises and identifies as dementia?
I don’t know, but I do know I am grateful for the many years we have enjoyed since being given the diagnosis.
During the CB, or circuitbreaker which is what our lockdown was called, there were strict restrictions on contact with the elderly, particularly in care institutions. To protect the elderly, no visitors were allowed at nursing homes and elderly day care was suspended. These restrictions extended into Phase 1 after the CB.
Mom’s dementia is so advanced that she doesn’t miss dementia daycare. But perhaps daycare misses her. In any case, with the centre closed and the staff still on payroll someone probably thought something still had to be done for the patients by the staff. After all, the whole idea of dementia daycare was to stimulate the mind and slow dementia progress. And that should go on, CB or not.
I think that’s the idea behind the one-hour WhatsApp meeting. Every now and then the centre would call and make an appointment with Mom. During the call, Mom would sit facing the handphone, looking at three animated faces of the daycare staff and one vaguely familiar one (her own).
They would cajole her to speak and to sing. Sometimes they would speak the wrong language to her, which is not her preferred language, and Mom would struggle to respond in that language. Maybe they think that struggle is due to dementia, not realising their error.
Sometimes they would call her the wrong name and she would stare back at them. Maybe they think that’s due to dementia too. In actual fact she didn’t know they were talking to her, and if she did, she didn’t know how to correct them. Maybe she was offended. I would be offended too.
But it’s good that they tried some form of contact during CB and in Phase 1. Now that Phase 2 is here, elderly daycare is allowed to operate again, so things will be back to “normal” except plus face masks and social distancing. I wonder how the new changes will be accepted amongst the persons with dementia. I hope there are no covid breakouts amongst the elderly care centres.
Note: CB started on Apr 7, Phase 1 on Jun 2, Phase 2 on Jun 19.