Trigger Warning: This article contains mentions of elder abuse, medical negligence, and chronic illness.
I’ve been thinking a lot about amma.
We found her one summer family trip just lying in her own wee in her “favourite” son’s house. They used to slip two sleeping pills into her bournvita so she wasn’t too much of an infringement on their day. She was allegedly “a handful”.
I think my dad suspected what he would find at his brothers house. He pre-warned us before the trip that we might have to bring her home and care for her. My siblings and I looked at him with a “Duh!” look on our face. Like, why did he even need to ask? I’m sure the conversation with my mum would’ve gone the same. There are just somethings that are a given in our family – if you need a home, we will be your family.
What was meant to be a regular summer holiday family trip to Kerala turned into one hell of a rescue mission. We drove a whopping 13-15 hours, stopping on the way at our favourite road trip restaurant for a sweet corn chicken soup. It was tradition. We picked up vanilla ice cream (her favourite) and made our grand entrance. Once we saw amma in her state, I woke her up to take her to the toilet. She was groggy and uninterested. She’d lost a lot of weight. But hearing our excitement and the promise of veela ice creeen (she could never say vanilla ice cream), she allowed me to sit her up and then slowly walk her to the toilet. After a quick change of clothes, and brain-freeze speed ice cream eating, she collapsed back into bed.
We didn’t know how long she’d been lying that way, unattended, before we arrived. In our broken Malayalam, us siblings took turns whispering to her that we were taking her home. Late that night as we lay on mats on the floor, amma woke up and started asking when we were leaving. A small miracle as we thought she was on her death bed. Dad seized the opportunity, and quickly started asking us to pack up so we could leave asap. He just knew that if we didn’t leave right that second, the moment would pass. So we quickly piled into the car, carrying my grandma along with us. It was hard, heartbreaking work.
On the one hand, she wanted/needed to come with us. It literally was a life or death situation. On the other, she was saying goodbye to her ancestral home she’d probably never see again. I can only imagine the grief and fear she must’ve felt. She lay at the back of the car for 15+ hours as we drove back. We were soooo excited to have her, singing at the top of our voices. It was a road trip I will never forget. The operatic versions of Bohemian Rhapsody that we subjected on her is stuff of legend.
As you can imagine, our lives completely changed after that.
Amma was hardwork. I took on her caretaker role with all the enthusiasm as if I myself had birthed her. A ridiculous notion for a teenager to have but I was OBSESSED! It took so long for her to adjust to this new environment, and she was stubborn. She just wanted to lie in her bed and waste away – that was her comfort zone. But we insisted on a daily routine. I would bathe her, then bring her to the dining table for every meal. Getting her involved in family meals that way was our way of showing her that she was part of our family and we wanted her there. Eventually, she taught me the choicest of Malayalam words that I’d then ask my dad the meaning for (it was always something nasty) – and you would catch her giggling.
She started coming back into herself. We would find out she was paying attention when she would mumble the plot of a ridiculous movie we were watching when the parents were out. Eventually she would start walking again, peeking out through the curtains to see what was going on outside. She’d then report that there was a “short lineman with a tall ladder” trying to rig the electricity pole. She’d say ridiculous things like the world was going to end. In the middle of the night, she would start singing her gospel songs so loud and so off key that we couldn’t help but cackle. We learnt all the prayers and songs in Malayalam. We learnt all her funny puns and play on words.
I would often involve her in my chores. When on her good days, I’d take her out to the sun and ask her for her help to dry the laundry. Or I’d insist I needed to go shopping and take her to the nearest supermarket (it was just two doors down). You should’ve seen the look on her face when she saw that dogs could get food in the same store as humans. WHAT?! Of course, she always conned me into buying her her favourite ice cream. I never stood a chance against an ice creen fiend!
When she got older, getting her the medical care she needed when she was ill was a nightmare. She had so much trauma from the hospitals, her fight or flight instincts would kick in. Even when one of her granddaughters was the nurse on duty, she could not “follow basic instructions”. Making someone with trauma and disability stand up for an xray, for example, is so inhumane. In their eyes, if she could walk, she could do everything as easily as an able bodied person. The logic 🙄
The doctors who came home didn’t have any luck either. This is a woman who was sedated against her will and given the wrong medication for a wrong diagnosis. Instead of retraumatising her, we had to make the hard decision to let it be. And then we’d watch and hope that she’d survive.
In spite of it all, she lived a long second life with us and in the end she died peacefully in her sleep at an amazing 94 years old. She even got to terrorise Adam for a couple of years (she really was so gentle with him).
My favourite moments were when it was cold outside and she’d allow me to get into bed with her and we’d just cuddle. She got used to us being a very affectionate family, and she acted like she tolerated it because it was us. But her little chuckles always gave her away!
I think of this now because Dill, a friend, is fighting to get the care they deserve. Dill is 31 and is an incredible artist, poet and organiser in the local community. They have been diagnosed with severe Myalgic Encephalomyelitis (ME), a rare and complex neurological condition. Due to institutional negligence and harm, their quality of life is deteriorating rapidly. We’re raising money to help them get the critical care they need. This fundraiser is a last resort after nearly 12 months of unsuccessful attempts to obtain the life-saving care they desperately need.
It’s such an unfortunately common story for healthcare to fail us – but it shouldn’t be that way. Read Dill’s story here.
It would mean the world to me if you could help in any way you can. Whether you donate or spread the word, your support would be life-saving. Click here to donate to the crowdfunder.
Amma was lucky that she had family who could step in and afford the bills. But it was a community effort. Even with the challenges of the healthcare system, she had the opportunity to live out the rest of long life with some semblance of dignity – surrounded by people who loved her. I think everyone deserves a chance at that. Don’t you?
This Labyrinth I Roam 
Your Amma was lucky to have such a loving family. I knew you had to come from a good family because you’re such a good person yourself. One of my biggest fears is growing old and helpless and being cared for by people who are indifferent to me. Heading right over to that crowdfunding page. ❤
LikeLiked by 1 person
Barb, thank you so much! This is so kind and I don’t have the words to say how much that means to me! I’ve got your back the way you’ve got mine! Sending you so many hugs x
LikeLike