During the Covid-19 social distancing, Mom’s activities were severely restricted and she was not able to go for dementia group activities. As those activities have been allowed to resume, she was invited back.
She’s not so happy about it though. Her whole demeanour conveys, “What’s the point?” She leaves home for those activities looking glum. But she smiles again when she’s back, cleaned and settled. So I know she’s not totally oblivious to her surroundings although she is sleeping and has her eyes closed most of the time.
She doesn’t complain, probably because she has no urge to speak or express herself, or has lost the ability to do so. But I can read her expressions and I do try to update her what’s going on. She pays attention, and sometimes she rewards me by replying with one word or three. Mostly she simply nods or shakes her head ever so slightly in response to direct questions.
I wish she could say more. She’s obviously thinking about something. We can only guess what she’s thinking.
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.