Perhaps you might ask where have I been for ten years.
….Assuaging fears, fighting tears,
Drafting medical appeals,
Editing movie reels.
Living a life of round holes and square pegs,
Trying to making sense
Of Dad’s life being on the fence.
Hiding in silent shadows,
Processing what happened, writing poetry and prose.
Being a family caregiver of someone with a severe condition.
Making his wellbeing our top mission.
But an honest question – who cares about the carers?
Society’s cross bearers?
We hunker down in life’s trenches
As the world around marks benches.
Answering the call in crisis to care for loved ones dear.
We want them well and we want them here.
It is not their fault they are sick or in pain.
In fact, isn’t that the definition of family? To be there in sunshine and rain?
It can be emotionally draining.
Few actually understand, so we’re often refraining…
From telling people the extent of this pain.
But we carry on because our efforts must not be in vain.
We often we take time off from careers– it’s a must.
But when we go back to applying, it’s a bust.
When you re-enter the race,
You’ve lost pace.
Companies tally years of “work experience,”
Rather than honoring life experience.
You’ve been working hard to sustain your loved one’s breath,
Valued less than sitting at a corporate desk.
Our society does not value human care.
People judge you by your marital status, baby count, or career.
If you are not a CEO or are not child bearing,
You‘re a discarded entity or a red herring.
Occasionally you find a diamond in the rough,
Who understands that your road has been rough.
That because of it, you are tougher still,
That because of your resilience, you fit the bill.
The years have gone by-you’ve been hanging by a thread.
You can’t get ahead, but at least your loved one is not dead.
‘Career’ vs. ‘Carer’ …the difference is a simple E,
But the distance between is so great; I wish the world could see.
Age 34-44 were prime years,
For building upon life’s tiers.
I had the blueprint! Career, partner, child,
But instead, shit hit the fan…and that’s putting it mild.
I tossed the blueprint out the window,
I didn’t want to lose my Dad, and I didn’t want my Mom to be a widow.
It was a constant struggle to balance work, social life and address family needs,
But when you leave this life, you are only remembered by your deeds,
And so, the most important thing to me was to help my parents and make sure Dad was ok,
So some of my own decisions were postponed and put at bay.
Let me be clear that this is a sacrifice I wanted to make,
Considering that his very life was at stake.
Lots of behind the scenes work, hiring and firing caregivers,
Things to address daily – felt like swimming against a rushing river.
Mom did most of the firefighting day to day,
I tried a balancing act of living my own life (which Dad wanted) but didn’t want to betray,
My parents when they needed me the most.
So I went back and forth between home and life on the East Coast.
Friends got married, colleagues had babies.
And I sat dreaming as my dreams teetered precipitously atop “someday, maybe”.
Frankly, this made Dad quite sad; he wanted us to live normally,
But we knew our situation was as far from ‘normal’ as it could be.
We tried to sacrifice for each other, to live for the other’s wellbeing,
In trying to look after the other’s interests, we were often disagreeing,
Which caused conflict and stress,
But under the circumstances, we did our best.
Though we argued, we found harmony and peace,
And most often, it was the Peacemaker Dad, who made the arguments cease.
Only we know inside what it took to keep Dad alive.
It took all hands on deck to sustain my Dad and help my mother thrive.
I supported them as best as I could, petitioned the system and had to fight…
To secure essential services, submit appeals, and do my best to turn wrongs into right.
It killed me quietly that Dad had succumbed to dependency,
His condition made him want to die too, because he thought he was a burden on his family.
But I mustered all my human energy to stop that line of thinking it its tracks.
And talked with him for hours, months and years to lay down the facts.
The fact is that his sickness and paralysis never defined him; his soul is who he is!
And that despite limitations, the world and everything in it was his.
He was alive and had the strongest will power I’d ever known,
And as the years passed, together we’d grown.
But when you climb out of the trenches, nobody listens to the narrative,
Because caregiving is a sacrifice you’re “supposed” to give.
Especially when you are a South Asian daughter.
You’re technically supposed to have a stellar profession, find a husband, produce kids and take care of your mother and father.
At least that is the pressure we put on ourselves and what society says.
That undue pressure is a misguided cultural malaise.
In India of generations past, extended family was a social prescription against aging,
Here, care for the elderly is the battle we’re waging.
Social institutions and health care systems fail,
Personal and professional lives of family members derail.
Community members say “good job!” “we’re proud of you!” and carry on,
While you try to manage the pieces of your solitary, broken life and try to move on.
“Good job” doesn’t get the bills paid.
“Good job” has no meaning on a dating application or a job resume.
Your body starts to wear, The emotional toll you can hardly bear.
With each emergency, you think he is going to die. But the doctors save him and with gratitude and relief, you cry
Caregiving: an industry worth 600 billion bucks,
Having had no family sick leave at the UN sucks.
As you plow forward through tragedy with blaring lights and siren,
It hardens your will and spirit and turns ore into iron,
Sure, I am a policy analyst and a lawyer and all the social fodder.
But my proudest title yet is being my Father’s daughter.
Caregiving makes your life that much harder,
Few understand, though there are some insightful ones like Anne-Marie Slaughter,
The struggles are real.
But by putting them down on paper, I can start to heal.
And no, I am not going to silence my own part of this story.
I celebrate my parents and indeed they deserve every last ounce of love and glory.
But I can’t delete myself from the narrative – that would be unfair,
To the millions of other caregivers and the common struggles we share.
Unpaid family caregiving is consuming and thankless.
Luckily Dad didn’t leave us totally bankless.
He worked hard, saved for a rainy day, but boy did it pour! The lightening flashed and the thunder roared.
Of course sometimes that is all people focus on – money.
Comments like “Hey, at least you could afford it” were not helpful or funny.
Would they like to trade places for a day?
In fact, come over for a week or a month, or a year! Put in the time, stay!
My father thought ahead and purchased insurance for longterm care. That is how we were able to fare.
But our social systems are failing and its falling on family. Our home healthcare system has now reached the peak of calamity.
Our bodies ache,
Our hearts break.
Friends who judge or don’t understand, one must foresake,
All these experiences do a life make.
The way I see it though – at least we could put in the time God said we needed to serve.
At least that, my parents deserve!
I would not change a thing.
Other than, I wish I could just bring..
My Dad back.
It was a simple fall in March of 2006,
That resulted in my Dad’s neck too broken to fix.
He had once said to me, “Dependency is a disease”
But after the fall, his neurons below the neck began to freeze.
Below the shoulders, his body was broken,
“He’s paralyzed from the neck down, there is no cure,” the doctor had spoken.
The neurosurgeon’s verdict came in,
Dad would never walk again.
How could this be true?
He was only 62 – had so much living to do.
He had taken early retirement and he and Mom were traveling,
Why did this happen to him? Why was his life unraveling?
He worked so hard for so long,
His golden years were supposed to be a melodious song.
His care needs were going to be a Herculean task,
To the point maybe he thought it was just too much to ask.
Dad knew very well the toll his condition would take on Mom, my brother and I,
In fact, it was for that very reason that 5 months after his injury, he decided to die.
He made a competent choice to pull the plug,
If you read through the lines though, it was really an epic battle of love.
He wanted to die, so we could live a more normal life.
He wanted my Mom not to be a caregiver, but to enjoy being a wife.
He wanted his children to advance and thrive.
But we just wanted him alive!
We wanted him at all costs, even though we knew he had the right to choose,
No matter the condition, his life was just something we couldn’t stand to lose.
Even though I was broken, if he really wanted that, I was willing to abide.
But in the end, his love for us, and our love for him prevailed & he stayed by our side.
Blessings and gratitude abounded,
With his willpower and resilience, he astounded.
He overcame challenges and emergencies,
We made lemonade from lemons; celebrated countless birthdays and anniversaries.
One day we saw his toe voluntarily move,
And we screamed with delight – we were sure he would improve!
Alas it was a false alarm,
It would have been nice if he could have at least gotten an arm.
I plunged into research, trying to find a cure,
We got him the diaphragm pacer, maybe that gave him another 4-5 years, for sure.
We lived, we fought, we held onto to each other,
Our unit, though injured, was complete – my Dad, my Mom, myself and brother.
It was tough but we were content,
There was lots to be done but there was no time to lament.
We filled the unforgiving minute, and the years passed,
We coveted every second and made the moments last.
Precious moments suspended in time,
How I wish I could rewind,
And relive them again,
And so, here I am now, picking up a pen…
To write, reflect and remember,
Because it all came to an end on the 13th of December.
I read this article and I feel it applies to disability and death of adults too. I hated hearing things like this. I will follow the author’s list of five and tell you why I feel these comments made (and make) me cringe.
1) “Everything happens for a reason.” Maybe this is in fact true in the grand cosmos but it is the least helpful thing you can say when someone is in the depths of despair and loss. Writing everything off to God and Destiny is an easy way to address and quantify another’s hellish loss. The person experiencing the loss is already trying to make sense of a senseless situation. No need to preach to the choir and artificially make sense of the senseless.
2) “They are in a better place.” Who are you to say this? This comment makes me silently livid. No, my Dad should be enjoying his retirement, enjoying the fruits of his labor. He should be a Grandpa. He should be drinking tea with my Mom. He should have had the chance to see his daughter get married. Who are you to tell me he is in a better place? Are you personally friends with God? Did God tell you this himself? ….Side note: When my Dad was considering ending his life back in 2006 when he was initially injured (the subject of Should Tomorrow Be), people also advised us to let him go and “end his suffering”. Essentially, they were telling us to kill him because he was injured. They were taking it upon themselves to determine the value of a human life and advising us to let him go and end his suffering – what they decided what suffering and something they would potentially not live with. They determined the value and worth of a life. A disabled life. Instead of letting Dad go, we let those friends go and kept fighting for his life, his dignity, his recovery, his comfort, his peace, our collective enjoyment and all the amazing moments that made the last ten years worth it.
3) “At least you have one survivor. Count your blessings.” I have heard many people say “At least you have your Mom. Take care of your Mom”. Or “Count your blessings that you were so close to your Dad”. I get it. I have been taking care of my parents in many ways for a decade and longer. I do take care of them. I did. I do count my blessings. You don’t need to tell me this. I hardly think about myself. I am filled with gratitude that I was able to share so much with my Dad. But the point is, he died. He is gone. That rips the heart out of people left behind. I MISS MY DAD AND HE IS THE ONE THAT GOT INJURED AND THEN DIED. I miss him everyday. NOTHING AND NOBODY ELSE can replace someone you have lost.
4) “You are still young. You can have more children”. This is like telling me to go get another Dad. EACH INDIVIDUAL HUMAN IS PRICELESS, IRREPLACEABLE, INDISPENSABLE, LOVED.
5) “I don’t know how you do it. I couldn’t imagine….” So many people said this to us when they saw us taking care of Dad at home. “I could never do what you are doing.” I can’t imagine”. The thing is, you would do what we were doing if this happened to you. Or you would put your loved one in a nursing home, watch them deteriorate and have to live with that decision too. You would do what you need to do if those were the cards you were dealt. When someone says “I can’t imagine” about the death of my Dad, it’s like they are saying, “Sorry you lost yours, glad I have mine” and it just pinches. I am glad you do not have to imagine and you can keep this pain at bay, but for many they have to live with the reality.
I know people who have not experienced loss often do not know what to say, but hopefully this helps a little… I appreciated the article
June 30, 2017
A little venting rant here. The attached article hits the nail on the head. I want to be careful not to complain too much or condemn or point fingers at anyone specifically, but I definitely dropped a couple friends during my Dad’s disability, primarily due to number 2 in the attached article – judgment. When I said to a longtime friend 1 1/2 years ago that I was having a hard time, she replied, “You are always having a hard time.” She said, “You have done nothing since you came to DC. She also reminded me that I was unemployed and was not growing my small business. Ouch. She also said I made my film to get attention.” WHAT? SERIOUSLY?! UM, NO. I share this because I just want people to be aware how devastatingly hurtful comments and actions can be when you are already going through a difficult time and really need support. I did not bother explaining that family caregiving (caring for a sick family member and caring for the primary caregiver) is an unpaid $600+ billion dollar industry comprised of 44 million people in America, driven by love and necessity, not dollars. And that we won all the appeals to get my Dad’s equipment that he needed; that there were mountains of administrative work; that we hired, managed and occasionally had to fire or throw out with the police 35+ caregivers over 10 1/2 years; and that my Dad lived 6-7 years past his ‘life expectancy’ and other things that required so much time and attention were the real victories for us. And it is true that other areas of life were neglected. Not easy to balance when life is turned on its head and there are only 24 hours in a day. And you are tired. Personally, our mental, physical and emotional “crisis mode” lasted for 10 years and 8 1/2 months. Every vacation and every break was a chance to have respite care. Every outing was a chance to feel normalcy or talk it out if need be. Certain people have NO idea what this is like. (But how can they know?) Another friend, who went through 3 1/2 years caring for a sick child and eventually lost her told me “Not everyone can take this journey with you.” And I have learned that this is true. So I have let certain people go (with love). And have taken those instances with a grain of salt, in hind sight. I have also come across people who have been shining stars in this whole process. I am forever grateful for them. I don’t expect the world to bend itself to suit one’s needs during crisis, illness, loss and grief. The world never has and never will. But I would expect ‘friends’ simply not to judge someone else’s suffering and situation if they don’t know what the challenges are and if they don’t know what it feels like and what is entails. People find it inconvenient and uncomfortable to attach themselves to a person or situation that is emotionally difficult. And they don’t know how to deal with it. I forgive them and pray that they do not suffer and do not experience severe illness, injury or death in their lifetimes. And if they can breeze through and handle crisis and grief like rockstars, more power to them. But I hope they don’t join this club anytime soon. But I am so so grateful for the support of those who have been there. (And grateful for the incredible kindness form unexpected corners). Most importantly, I am grateful my Dad stuck around for as long as he could. Every talk, every smile, every moment of joy, every lesson learned, every experience, every nugget of wisdom transferred, every minute together, was worth it. To the friends who held us through, thank you for your compassion and empathy and you know who you are. One can’t always be positive. And occasionally, there will be frustration and rants. But if the rant results any one person having a better experience in any way (better friendship with someone; better understanding of crisis and grief) then it will be worth it. At least people should not hurt each other. And if the hurt is unintentional then at least there should be awareness that some things cause pain. Article attached. #Judgementfreezone