It is 9 pm and I am sitting in the snug and warm kitchen of my clients home. It snowed today so there is a wonderfully serene and calm sense of quiet. It is amazing how snow can do that. It seems to serve as a welcome buffer to sounds, especially at night. I thought it was just my imagination so I googled it and discovered that unlike rain, snowflakes have an open space in their six-sided crystalline structure. This open space acts as a sound buffer, helping to reduce noise so I learnt that it is indeed a fact. Snow does make everything seem quiet. The silence is exquisite and I savour each minute of the perfect calm.
All I can hear is the gentle breathing of my client on the monitor as she sleeps. This is the only time she enjoys a little time of peace. It doesn’t last long though and her every waking moment is spent in a state of utter confusion, fear and anxiety.
The stunning snow today made me think of how blessed a person is to make it to the ‘winter’ of their life here on earth with their dignity and all of their faculties intact. It is rare and makes me think of ‘The curious case of Benjamin Button’. Would it not have been kinder to be born old and grow younger? During four years of caring in England, I have been exposed to the tragedy of Dementia. It is tragic, not only for the person afflicted with this debilitating disease but for everyone around them, especially their family.
My client is resting well now. She had a bad day. Her memory of some of the worst things which could happen to a child, including going blind at the age of five has now come back to haunt her. I so badly wish I could erase all these awful memories to save her this constant terror and anxiety. These memories with a timeline in total disarray are so real to her and she is reliving it all. The memories are all jumbled, so remembering the war to losing a cat, all become intertwined in ghastly recollections and the fear in her eyes leaves me questioning so much about our life here on earth. I know this sounds dramatic but what could possibly be the purpose of this?
I don’t have the answers and I can only hope and pray with all my might that somebody will find a cure for this abysmal disease soon.
Family is so important. My client has a wonderful daughter who had a less than perfect childhood herself but came to the realization as an adult, that her mother had done well considering the life she had had. She made a promise to make her mother as comfortable as possible during this phase of her life. She often sends postcards with snippets of happy memories to help us carers bring these happy memories to the fore when her Mum is plagued with so many devastating and traumatic events which took place in her life. If it wasn’t for her daughter passing this information on to us, we as carers would have nothing to take her back to.
This is the first time since I started caring that I am ‘officially’ on night duty. My days have turned into nights and my nights into days. My client has slept for one hour. There is no point in trying to reason with someone in this stage of dementia. It is a pointless exercise to remind her that it is the middle of the night. Time simply doesn’t make sense to her anymore. What intrigues me most is that she wants to go home to a place she spent the unhappiest days of her life as a child.
The silence of the spectacular blanket of snow in the garden outside is now marred by the sound of fear as she wakes to memories which come flooding back to torment her. My heart aches.
I have found myself in the very fortunate position of caring for this lady along with two other delightful carers. They are both on duty during the day because one carer has to be with her for every second of the day. For me at night, it makes coping so much easier because I know that there are two beautiful souls upstairs (trying to sleep right now) who would jump out of bed in an instant if I needed them. We get together every evening for a little while to provide that bit of ‘normality’ for each other. Three of us, all in a different set of circumstances in our lives, the common thread – we ‘care’.
I stumbled on this article written by a daughter who bears witness to the terrible decline of her beloved Mum with Alzheimer’s written by Noreen Sadik
I will leave you with this to remind you that life is short, the promise of a perfect tomorrow is never guaranteed. Create beautiful memories and treasure each precious moment. Always.
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.
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.