I know dementia is more than a mental deterioration as it is also accompanied by physical losses. Gradually and inexorably, abilities are lost. The ability to walk, talk, toilet, swallow…
I’ve often been told how lucky I am that Mom has a healthy appetite. She would eat her meals and snacks in between mealtimes. Though before she came to live with me she was actually losing weight. I suspect this was because she forgot her meal times rather than due to any loss of appetite.
With readily available hot meals she gradually regained the weight. I remember the surprise I felt when the geriatrician asked, “Does she chew her food and spit it out after extracting all the juice?” I said, Not yet. Apparently letting dementia patients spit out the hardest bits is okay.
Anyway we’re not there yet. However, over time, she has lost the ability to use her utensils well. She spills food, she slows down. Sometimes she is unable to swallow her food, and keeps it wadded in her cheeks. When she stops chewing or swallowing, we check if she’s still hungry, because we are not sure if she stopped swallowing because she can’t or because she is already full. Very often she nods and indicates she is still hungry.
We’ve taken to feeding her and reminding her to swallow, encouraging her with mouthfuls of water. We cut all her food up to small pieces. She can still finger feed when we offer a sandwich or fruit such as grapes.
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.