People

Caregiver

SUKHVIR KAUR SINGH

Praise.

It’s what I receive whenever I tell people that I care for my grandparents when they ask me what I do.

“That is the greatest seva one can do,” they tell me.

It makes me uncomfortable.

It makes me uncomfortable both because I’m not one for attention … and because I’m not quite sure what there is to praise.

I’ve been caring for my grandparents since I was around 15-16 years old. It’s been my dirty secret in many ways because of familial complications involving shame in its mere discussion.

Sons are to handle such a responsibility. Such is not the case in this instance and so we must remain quiet about this shame.

I took over when I was a teenager because I could no longer see the responsibilities for my grandparents being tossed around between their children. I knew then that there would be many sacrifices I’d have to make but I didn’t think much of it. My grandparents needed someone and I didn’t hesitate to step up.

It was as simple as that for me.

They are my world, they are the loves of my life and I would do anything for them. It’s what I always tell everyone and it’s true.

But rarely do I ever discuss the difficulties that go along with it. Much of it is because of the guilt it brings in me for even feeling anything but happiness and a willingness to return the love and care they gave me.

Yet, it is a reality. It’s my story that I often feel I have to ignore especially when I’m praised for it. Throughout the years there have been many times I feel I have lost myself. All my needs and desires take a backseat. It’s a given and it’s something I knew I’d have to let go of but the sudden realization of what I’m missing out on always becomes clear when I encounter the things others around me are doing.

Shame seeps in at that point.

While others are moving onto doing amazing things with their life, I remain stagnant. I not only remain stagnant but the caregiver that has become me has overtaken my sense of self.

Recently, while attending the Sidak retreat in San ntonio, Texas, USA, we had a workshop on expressing our thoughts into poetry. The loss in my sense of self became alarmingly real. I struggled. Everything I was writing had to be thought out first. It had to be perfect. My feelings were no longer guiding my voice.

When I felt I had a piece I thought I was proud of, I couldn’t gather the courage to express it in front of others. I doubted myself. Even after I was encouraged, it still wasn’t enough for me.

I have lost my voice. It’s all I could think of.

You see, when I was younger, I’d go into this bar where every week they’d have a sort of talent show. Everyone was welcomed to do whatever he or she pleased – be it poetry, singing, acting or comedy. Most, including myself, would recite poems we had written. Back then poetry was my release, especially through my years of depression.

It was my little secret, too. In those few hours I was away from home, poetry was the one place I didn’t feel as though I was drowning. I existed. My needs existed. But more importantly, I had a voice that existed outside of the caregiver.

But somewhere along the line that was lost. The demands for my grandparents outweighed my own and, eventually, I placed every person in my life before me.

After all, that’s what caregivers have to do, don’t they?

What people don’t realize, including myself, is just how consuming giving yourself wholly to caring for another can be. Your entire life is organized around this caregiving. You don’t have time to socialize. You become disconnected from others.

You don’t have the luxury to step outside of your house whenever you feel the need to take a break. Or even when you do take a break, there is always guilt involved because it makes you feel selfish.

There are many, many sleepless nights. Work sticks around you; you can’t leave it. There is a rigid schedule to follow. School, friends, and your personal life begin to feel like a chore. You fade away into this role.

There are many times I feel like I’m stuck, alone at sea while watching everyone else around me swimming to the shore. It’s a sinking feeling when you come to realize this caregiver has overtaken your needs, goals and existence.

You come to equate yourself with the needs of others. You exist for them. You don’t feel you matter, let alone deserve anything that feeds your self. Finding a balance seems and is next to impossible. And the exhaustion and sacrifices don’t stop with just my sense of self, unfortunately.

My grandfather has many ailments that require constant attention but the most difficult to deal with is his PTSD (Post-traumatic Stress Disorder). Grandpa served during WWII and later on in the UN alongside his eldest brother.

It’s something we all celebrate and commemorate. We’re proud to display his medals and plaques in the house. He, too, seems to be proud of his time in the army. Quite often we’ll sit around the dinner table and I’ll always eagerly ask him to tell me stories of when he was a soldier.

My favourite is when he talks about one of his dear friends whose bond with my grandpa was one of loving protection.

“Sukhvir, he’d wave his finger around in front of everyone to warn them he would cut it off if they ever harmed me,” my grandpa tells me.

Brotherhood, it was. We used to have a picture of them together during the army but it got lost many years ago when we were moving. But the memories of my grandpa’s service in the army haven’t faded. He enjoys telling us about their drills, parachuting out of airplanes, his adventures in Italy or the jungles of India, and the jokes and pranks he and his fellow brothers would play to ease the pain of their distance from their families.

It’s easy for him to talk about the good parts. But when it comes to the darker side of war, he remains silent. Words don’t leave his mouth when something triggers a dark memory or when he awakens at night in panic from a dream he thinks is real.

He’s left paralyzed. And I, helpless.

When grandpa goes through an episode at night, I’m always terrified. I can see the fear in his eyes. I can feel whatever has entrapped his very being in its claws. Breathing becomes difficult for him. Voices and noises take over his mind. I know he exists in that very moment but he isn’t aware. Bringing him back to himself takes a toll each time on both of us.

He doesn’t speak about it. He can’t.

Many times I get frustrated at his silence. I want to help him. I want for him to release this pain but I realize he cannot. Instead we sit together outside and I do my best to get him to breathe in unison with me. It becomes my turn to tell him stories. Stories that make him happy and remind him where he is.

And we cry. His pain becomes mine.

I realize I cannot and will not ever understand his exact pain. But I know pain and I know what even an ounce of it does to a being. So I sit with him and let him know he’s not alone while knowing there isn’t much else I can do.

It’s a constant occurrence, and having to deal with it becomes painfully exhausting.

For those who are living with PTSD or know someone who does, it’s not easy. For those of us who are caring for relatives or friends, it’s not easy. It seems trivial to state the obvious and yet, saying it reaffirms this reality because I often find myself brushing it off … especially when praise comes in.

Praise makes me trivialize my experience.

When I was asked to write about my experiences, the uncomfortable feeling crept in. Praise makes me feel like I can’t talk about the harsh, cyclical realities I encounter. I would do anything for my grandparents and indeed, I do but there are many, many days where I don’t want to do it anymore because of the sheer exhaustion.

I feel entrapped. I feel lost. I feel angry for the loneliness it creates. I feel helpless. These are the things I want to speak of when people give praise but instead I feel I have to nod and smile.

That’s when my good friend -- guilt -- creeps in.

Am I supposed to talk about this? Can I talk about this?

The praise may come from an understanding of the difficulties involved in caregiving but it hinders me from speaking the ugly truths. It’s uncomfortable even when it’s not intended.

This is my reality.

And I’m never all too sure if people want to hear this or the simplistic version of unconditional love.

September 3, 2013

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