‘To my dear mother’: living with dementia
Copyright Noreen Sadik
To my dear mother...
There is an image in my mind of you that does not leave me. You’re wearing a turquoise shirt, tucked into that turquoise and black-flowered skirt that you loved. You’re standing at the dining table, your hand resting on the back of the chair. Your hair is slightly dishevelled and you look confused, maybe even angry.
It suddenly crosses my mind that I didn’t say goodbye to you. I should have grabbed the chance, but it just did not occur to me that each day I was losing more and more of you? How could I know?
I’ll never forget the morning that I took you to the neurologist. ‘I don’t know why I have to go to the doctor. I feel fine,’ you said as we crossed the street. ‘It’s nothing, Mom,’ I told you. ‘At your age, you should take a few tests.’
I hid my shock and held back tears when the doctor asked you a few simple questions. I wanted to whisper the answers to you, but this test was about your awareness, not mine.
Until then, I had not realized that you had lost all concept of time, you had lost track of the seasons, and you could no longer compute simple arithmetic.
The doctor later confirmed Dad’s suspicions. We already knew that something was terribly wrong, but his words turned into a painful reality the fact that you had joined 36 million people around the world who suffer from dementia.
We knew that dementia is a degenerative condition for which there is no cure. We realized that we had embarked on a long journey of heartbreak. We knew we would have to watch you fall further and further into the hands of this debilitating disease.
At this point you were in the middle stage of the disease. I wondered, ‘If this is moderate dementia, what is severe?’ It was not very long before I found out.
Journey into the world of dementia
Dementia is a cruel disease, Mom. You are its victim. It snuck into your – no, our – lives and took over your mind and destroyed your physical capabilities. We, your family, the unsuspecting bystanders, are also victims, and we carry a deep sadness within us.
Photo copyright: Noreen Sadik
A wise friend told me that you entered a new phase of your life, and that I should embrace the new you without sadness. But it’s hard, Mom. It’s so hard.
Our journey into the world of a dementia patient began a long time before that visit to the doctor. As you began each phase of the disease, totally unaware of what was happening to you, our awareness of dementia grew.
Do you realize how many house keys you lost? Do you remember the days when the house filled with the smell of gas, and you had no idea how it happened? Do you remember the restless moments when you wondered aimlessly around the house repeatedly arranging things? I laugh now as I think about how often I followed you around, rearranging your arrangement. Your moments of disorientation and obvious discomfort around people and unfamiliar places confused me.
Of course you don’t remember any of that.
But I remember that and more.
I long for the rainy days when the smell of your pastries and freshly brewed coffee filled the house. You liked to experiment with new recipes. One day you excitedly showed me the recipe for a ‘new’ rice dish. ‘It sounds good,’ you said. ‘I’m going to try it.’ I didn’t tell you that you had made it hundreds of times over the years.
And then there came a day when you stopped cooking. You just stopped.
We knew that dementia is a degenerative condition for which there is no cure. We realized that we had embarked on a long journey of heartbreak
In spite of your on-and-off confusion, you continued to spend hours sitting on the couch in front of the television knitting. ‘I have to do something with my hands,’ you would say, as the ball of yarn got smaller and smaller.
And then one day you put the needles down and you stopped knitting. You just stopped. ‘Mom, why aren’t you knitting anymore?’ I asked. ‘I don’t feel like it,’ you said, not willing to admit that your hands could no longer create.
I tried to jog your memory by placing the knitting needles in your hands. ‘Do you want to try, Mom?’ You nodded, but how could you try to knit when you did not even remember that you had made the colourful afghans that lay on the backs of the living room chairs?
‘You just stopped’
You are now 78 years old. The dark, thick hair of your youth is grey and thin. Your blue eyes, though sometimes distant and faded, are still clear. This terrible illness did not steal your beauty.
What it did steal is your body. You’re so thin now. You were not very steady on your feet so we would stand by your side as you took baby steps. We were so proud of you because even though it tired you, you still walked. But then it became difficult to hold you up. We gave you a walker, and everything was better.
But then your hip broke. Not only could you not explain how painful it was, but your legs stopped carrying the weight of your body. I can’t remember the day you stopped walking. But you did. You just stopped.
How can I forget the evening you and Dad went out, and I stayed at your home to clean it. You were wearing a beige suit. Two hours later, you came home. You knew I was tired. ‘That’s enough, Noreen,’ you said. ‘Go home and rest.’ You thanked me. ‘You don’t have to thank me,’ I said. ‘I’m your daughter.’ You answered, ‘And I am your mother, and we help each other.’ Tears rolled down my cheeks while I finished cleaning the bathroom.
And as I sit opposite you talking about this terrible journey into dementia, our conversation is one-sided. You were always a quiet person, but this is a different kind of quiet. A long time ago mumbles replaced clear speech, and now silence is your vocabulary. I never expected this kind of silence from you. Not from you, my mother. Talking – it is yet another thing that just stopped.
And now here you are, after a lifetime of worldwide travel, back in the place of your birth. You’ve come full circle. When you left your old life behind, you left your memories, and your house filled with your treasured collection of knick-knacks and dolls with their empty stares. Is it a coincidence that you often stare, just like they do?
I ask you to say my name. Noreen! Noreen! I want so much to hear you say my name again. You just look at me. ‘Do you love me?’ I ask. You nod. I smile – a little girl who still needs her mother.
What hurts so much, Mom, is that I failed to understand what was happening to you. I’m sure that you never felt my anger, frustration and confusion, but can you forgive me for feeling it? I’m so sorry that I didn’t understand your own confusion.
You always said you never wanted to burden anyone. You’re not a burden, Mom. And just as you carried us, we will carry you on the rest of your journey. We will not stop.
Dementia facts and figures
According to the the World Health Organization, dementia causes deterioration in memory, thinking, behaviour and the ability to perform everyday activities.
35.6 million people worldwide suffer from it.
By the year 2030, that number is expected to double, and by 2050 it will triple.
Each year there are 7.7 million new cases worldwide.
September 2013 marks the second World Alzheimer's Month to raise awareness and challenge stigma.
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