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‘To my dear mother’: living with dementia

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Noreen Sadik bears witness to the terrible decline of a loved one with Alzheimer’s.

Old people [Related Image]
Edward Lim under a Creative Commons Licence

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
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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  1. #1 Anna Torres Abblitt 25 Sep 13

    I've been through this and understand what you mean. Just hang on to the love that you know, it is still there, this is just a dark cloud passing through. Someday when it hurts a bit less I will write about it too. You just hang on to the love.

  2. #2 Stella 27 Sep 13

    I read this and it brought tears to my eyes. My mom's nearing 70 and though she is still the one who takes care of me, I fear that one day I will lose her and have to let her go. But I repeat after you: I will carry her when the time comes. We all will. Because we must.

  3. #3 Susan Jamieson 29 Sep 13

    Dear Noreen,
    Please know that you are not alone in your experiences. I know my mom is still there, just sort of locked inside, often separated from her memories and ability to converse. But every now and then the mom I remember surfaces in some small way, offering to share her blanket with me because she worries I'm cold, or asking if I am having a cup of tea too. I'm sure your presence brings much love and comfort to your mom, even if she has stopped being able to tell you so! Hugs, Susan

  4. #4 Noreen Sadik 29 Sep 13

    Thanks to those of you who commented, and also to those who shared my very personal story about my mother. Dementia is a terrible disease and can leave family members very confused. If you notice uncharacteristic behavior in your loved one, please have him or her checked by a doctor. It took a couple of years before we realized she might have Alzheimer's, and we feel bad that we did not recognize it before that. Dementia is not just about loosing one's memory, as I had thought. There is so much more to it, and I did not touch on many things in this article. There is no cure for it, but at least if you know what he / she has, you will understand their behavior. It is not in their control, and they need love and patience. Wishing you all the best!

  5. #5 Noreen Sadik 29 Sep 13

    Thanks to those of you who commented, and also to those who shared my very personal story about my mother. Dementia is a terrible disease and can leave family members very confused. If you notice uncharacteristic behavior in your loved one, please have him or her checked by a doctor. It took a couple of years before we realized she might have Alzheimer's, and we feel bad that we did not recognize it before that. Dementia is not just about loosing one's memory, as I had thought. There is so much more to it, and I did not touch on many things in this article. There is no cure for it, but at least if you know what he / she has, you will understand their behavior. It is not in their control, and they need love and patience. Wishing you all the best!

  6. #6 fran 06 Nov 14

    The mother you describe is exactly like mine...it is as if I wrote this about my mom. It has been 10 years of watching my mom suffer with this this horrible disease. I have cycled through so many emotions and I am back at despair. I am afraid that the end maybe near. Damn you dementia.

  7. #7 fran 16 Dec 14

    She left me 11 days after I wrote the previous post. I was right, she was slipping away. Thank you for your story.

  8. #8 Barb 25 Dec 14

    Here it is Christmas Eve, struggling with the loss of my mother due to dementia, which I had no idea. Only looking back now do I realize what was going on. And now with a traumatic brain injury and a fall, things are even worse. Soon mom, I hope you find peace.

  9. #9 Alison Hobbs 11 Mar 15

    Dear Noreen
    Thank you for being brave enough to put into words the experiences that I am unable to bare.
    This afternoon, I said goodbye to my Mum. I thanked her and told her I loved her. I reminded her of the hours we used to spend putting the world to rights: ’If only the politicians would listen to us, then everything would be OK...’ and she laughed. But I can't bare the deterioration and I explained this to her. She said she understood, even though she had forgotten that she had dementia. The changes I am witnessing are tearing me apart emotionally and in turn, my brother. How can I not sit infront of her and explain these things, one adult to another? She deserves this respect.
    Thank you for your testimony and I will keep your story to remind me that our family is not alone in this struggle. I wish your family all the strength in the world.

  10. #10 Josie 28 May 15

    Brought tears to my eyes reading this. Been reading the meaning of dementia disease. My mother is 85 with dementia for the past 15 years. Please know that you are not alone in your experiences. I know my mom is still there, just sort of locked in the past, and ability to converse and care for herself. But every now and then the mom I remember surfaces in some small way, remembering her adult children as when they were kids, asking to take her home at times getting very upset if she doesn't get her way, or asking for her husband and son that passed away over 4-8 years ago.
    I fear that one day I will lose her and have to let her go. Because we must.
    Best wishes!!

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