Old Photo, Old Pain

Posted on January 23, 2017

16


I was in India for three weeks, two of which were spent at ‘home,’ in Ahmedabad where I grew up. The day I was leaving, my sister gave me a suitcase full of old pictures. I greedily rummaged through them. I knew what I was looking for. A picture of mummy, Didi and me. A picture that I used to carry in my wallet. A picture that is etched motionless in my heart – I will it to turn into a moving photo like iPhones now allow us to have – yet it doesn’t. I had feared it was lost. But it was there. I had forgotten that I had written a note behind the picture. I wasn’t prepared to read that. I’m not sure I’m prepared to share it. But I know I must.

20170119_144124

I was 17 when I wrote that caption. In dementia, you mourn a person while they’re still alive.

For the last few months, I had felt like something was missing from my life. I had spent it feeling lonely, in spite of being loved and surrounded by people who respect and adore me. When I got this heap of pictures, I felt something shift inside. Leaving India was easy. I don’t feel alone. I feel complete.

Being a young carer* to my young and beautiful and talented mum with Alzheimer’s is the hardest thing I’ve ever done. It is not like anything else you can imagine. I don’t like to compare pain. I don’t like to say my pain is worse than that of others. But seriously, you have no idea what it’s like to have to follow your mom around making sure she isn’t gonna get lost. You have no idea what it’s like to have her bite you and hit you. Unless you had/have a parent with dementia or perhaps bi-polar or schizophrenia, you have no frikkin idea. Unless you had people whispering behind your back about your parent being possessed, you have no idea what it is like to be a young carer. Unless you’ve had your parent complain to complete strangers how you’re not giving them food, you have no idea what it’s like. Also, I considered not making the comparison to mental illness. But you know what, I’m done with worrying about dimwits stigmatizing illnesses! The worst part is, now that I work in the dementia space, I know that her behaviours were possibly caused by us not understanding her needs! Living with that guilt is excruciating.

When I saw that picture, I was overwhelmed. But it was different. It wasn’t about my loss anymore. It wasn’t about missing her anymore. It was about her. That she suffered. That she was not understood by us, by me especially – she loved me the most! That she cannot see how happy I am. That she couldn’t have the life she really deserved.

This other picture is taken in 1999. Perhaps the last picture of the three of us together. Mum is wearing dad’s old shirt and a drawstring skirt underneath. This was the most convenient attire we had discovered, thanks to her nurse. She couldn’t sit without support and often had to be tied loosely to her chair, while her bed was being made. She was on a thickened liquid diet for almost two years before she died of a respiratory failure that stemmed from being unable to swallow or spit out phlegm. On January 23rd 2001, mom succumbed to Alzheimer’s.

20170116_082907

Sorry, I couldn’t save you or help you or even understand you!

But this story is not over yet. Her legacy lives on. I now run a Meetup for young carers like myself. We come together and share our joys, sorrows, positive and negative thoughts and experiences. My colleague, who co-facilitated this group with me once, told me, “It’s like all of you had this sense of understanding – the recognition in all your eyes was very powerful.” No one else understands how the disease changes not only the person with the diagnosis, but also us.

I also run a group for people with Young Onset Dementias and their family members. We have kids, teens, nieces, nephews, daughters, sisters, spouses, partners coming together all in the interest of forgetting how brutal this disease is. There’s arts and food and laughter and dancing…a lot of dancing. I am often asked if this gets too much. How can something that redeems you be too much?

Seventeen years after she’s died and about 25 years since her diagnosis, I want to give up the pain narrative. For my sake. For her sake. This is how I’d like all of us to remember her:

My mother spoke four languages. She was a school teacher. She hated cooking, but was a good cook. She was a fabulous actor – too bad she stayed at the amateur level. She was a masterful storyteller and the life of the party. She loved her family, especially her brothers and father. She sang badly. But that didn’t stop her from singing. She was a lifelong learner and instilled the same love of learning in me.

mom1

My dearest mummy, I love you so much! And wherever you are, know that I live each day trying to make you proud of me.

Posts to read:

65 Things About My Mom

Like Mother, Like Daughter

Whom do you love the most?

My mum was just like Iris Murdoch

 

Advertisements
Posted in: Relationships