For Enomwoyi Damali, living with her mother who has dementia has taken some adjusting to. Here, she explains how looking for the lighter side of Alzheimer’s has helped her to cope as her mum repeats the same questions.
It wasn't until Mom moved in with me four weeks ago that I really appreciated the full impact of her condition, on herself and on me. It's been a real learning curve and I've had to adapt, modify and ultimately be patient with a capital P.
Right from the beginning of Mom's diagnosis I held onto my belief that she is a person beyond the label. The Alzheimer's is just one facet of her being. Even with Alzheimer's disease, there is so much about her that is funny, endearing, and just wonderful.
Yes, there have been many moments when I have felt so sad at how dependent Mom has become. At other times frustrated by her helplessness. And at other times still, I've felt despair at having to deal with the more personal aspects of the condition.
But by nature I tend to be 'glass half full' person and so I started to write about some of the experiences that have had me smiling or even laughing out loud.
This approach has kept me going and reminded me to look beyond the dementia.
It's important to remember my dear Mom, known to others as Pearl, age 84, who has so much to teach us. About living in the moment (one of the more positive aspects of Alzheimer's), staying focussed, and giving attention to detail.
Read Enomwoyi's story, ‘One hundred times,’ about Pearl's repetition and dementia
‘One hundred times’, by Enomwoyi Damali
One hundred times. That’s how often Ma asks the same thing. Well, maybe not quite one hundred, but for sure, once will never suffice.
‘These shoes?’ she asks as I pack her bag for a week’s stay with me.
‘Yes Ma, these shoes,’ and I point at them, preoccupied with searching for the bed socks that she needs to stop her feet swelling during the night. Where are those bed socks? They’re usually in the top drawer.
‘These shoes?’ she asks again with wide eyed innocence.
‘Yes Ma, put those shoes on. You’re coming to stay with me for a week.’
‘Ok’ she says and looks at the shoes. ‘But, they’re so ugly. They’re like a man’s shoes.’
I don’t have the heart to tell you that they are men’s shoes bought to accommodate her size 10 feet.
‘I know,’ I joke, ‘You wouldn’t wear them to a posh do but at least they’re comfortable.’ I hope all the talk about shoes will help Ma’s mind to keep focussed on what I asked her to do so I return to looking for those pesky bed socks. Ah! Found a pair. Bright red, they look like flight socks. BA or Virgin Atlantic perhaps. I roll them into a ball and push them down the side of the bag. Better look for another pair so that when one is being washed, she’s got another one.
Every time really is the first time for Ma, so I say it again with all the patience I can muster.'
‘These shoes?’ she asks… again. I look at her. It really is a genuine question. And there’s absolutely no point saying what’s in my head i.e. ‘Yes Ma, I told you that before, don’t you remember?’ or ‘but Ma, the shoes are right next to your feet. Of course you have to put them on.’
Every time really is the first time for Ma, so I take a deep breath and say, with all the patience I can muster, ‘Yes Ma, put those shoes on.’
‘But they’re so ugly. They look like a …’
‘Man’s shoes,’ I finish the sentence for her, ‘but put them on anyway.’
And I watch as she looks at the shoes. I wonder what she’s thinking. What is happening in her brain that means ‘put the shoes on’ so rapidly disappears into blankness?
Is she going to put them on? I shouldn’t test her like this, but I’m curious. Repetition is usually a good memory strategy. I used it for revision. Going over things again and again. Even saying things out loud over and over again.
I get lost in my thoughts and Ma is now looking for something in her bag.
‘Ma, put your shoes on. These ones,’ and I point to them.
‘But they’re so ugly,’ she says as she puts them on. ‘They look like a man’s shoes.’
I smile. Because the shoes are finally on and Ma has moved to looking in her bag.
‘What are you looking for Ma?’
‘The bed socks,’ she says.
NOTE TO SELF: For Mom, each time is the first time so… be patient.
Communication and language
Get tips on how to communicate with somebody who has dementia, including what to say, how to speak, and how to listen.