My father’s had Alzheimer’s for over fifteen years now. Earlier this summer, he and my mother got covid and were admitted to a hospital. During their stay there, he got pneumonia, so by the time he was discharged (after a month), his diet was being fed through a nasogastric tube that was connected to his nose: he couldn’t eat/drink from his mouth because of the risk of choking due to the pneumonia infection.
That was in July. Now, in mid-November, he’s still being fed via that tube, every day, every meal. And the doctors don’t foresee a change in that lifestyle.
It’s been a shock to our family to accept and incorporate such a significant change: most of his day is spent in bed, his hands strapped down. They can’t be free, because he then tries to remove the nasal tube (he forgets, because of Alzheimer’s, why that tube is there).
My mother, along with a home-based caregiver, gets him up from bed a few times in the day and has him sit down and watch TV/read books, to keep him active.
One of the things that’s changed over these past months is how he interacts with those around him: he gets aggressive and angry when my mother (or the caregiver) tries to feed him, bathe him or help him walk. He doesn’t remember that he’s being fed via a tube; he wants to eat like he normally used to, pre-pneumonia. He can’t express his feelings a lot, but what he’s likely thinking is that his family is deliberately keeping him hungry: ‘I’m being deprived of food, even though this is my home. I helped build this home and now they’re treating me so badly. Why do I deserve this?’
I can count on my fingers the number of times my father got aggressive and shouted, prior to his pneumonia. He was always a calm and patient father and husband, trying to make sure his family and home are as peaceful and loving as can be. So, when he gets aggressive now, it makes my mother cry. She misses the old times, as she calls it. She places her hands over his heart and tells him how much she loves him, how much she appreciates everything he’s done for all of us. But those words and gestures stay in his mind for no more than a couple of minutes.
She’s in the living room, having a cup of tea and taking a much-deserved short break, when she hears him shouting from the bedroom. She puts the cup down and runs towards him.
“I want to go to sleep!”, he shouts.
She’s panting and her legs are hurting. She has arthritis and knows that she shouldn’t be running; it’s not good for her knees. But that’s her gut reaction: see something unsafe happening to her husband? Abandon all precautions and go help him asap.
How can I express that kind of deep love via words?
“You don’t love me. I’ve done so much for you, but you don’t take care of me,” he says, his eyes closed, while he’s lying in the bed.
She’s standing next to him, crying and reminiscing about the decades they’ve spent loving and taking care of each other, and comparing those times to how things are now. This is the same husband who wouldn’t start eating lunch until she was at the table, next to him; the same person who’d come home from a long workday and help her cook food and clean the floors; the person who’d wear the same set of pants to work every day, for the whole week, so he could save money to buy clothes instead for his family; the husband who wrote a letter to his wife in 1978, when I was two weeks old, saying “I deem it necessary to express regret and remorse over my decision to prioritize work over our son’s naming ceremony; I’m sorry I wasn’t there for the ceremony and I hope you accept my sincerest apologies. Kisses to you and our beloved son.”
My mother knows that deep down, in his subconscious, he bears love for her. Nothing would change that. But that love is trapped under a pile of confusion and memory loss, and it manifests as anger.
There are moments though, when it manages to rise up from the pile in its true form. A few days ago, she had a cataract surgery scheduled for later in the morning. Before leaving for the hospital, she went by his bed and told him: “I’m going to a hospital for a cataract surgery.”
Within seconds, he tried to get up and out of the bed. “What?! I’m coming with you.”
She had to stop him (lest he took off the nasal tube), while also trying to stop her tears.
This was the husband she had known for forty-six years, ever ready to help. She remembered moments from years ago, when she’d turn in their bed in the middle of the night, and he’d wake up and ask if she was ok, if she needed water, if he could do anything to help.
Love isn’t just a word they both committed to when they got married. It’s the air they breathe and share, the family they built and supported. They never needed to explicitly say “I love you”; every moment of their lives was/is a testament to their love.
When my father was in the ICU, recovering from pneumonia, I remember being in the hospital with my mother and the doctor. “Please let me know what else I can do to help him heal,” she told the doctor. “My husband is my life.”
She’s a week past her surgery and the doctor told her that she needs to wear glasses all the time, for a month, to avoid getting stuff in her eyes. She’s so overwhelmed taking care of him that she often forgets to do it.
It’s his feeding time (he has eight daily feeds). The caregiver offers to do it, but she chooses to do it herself. “I want to be next to him,” she says.
She’s feeding him, when he starts coughing. She gets closer to him to clean his lips. He coughs more, and the liquid from his mouth goes into her eyes.
The caregiver rushes in to hold the tube so she can clean them, but she’s not supposed to put fingers in her eyes.
If this is not an expression of love, support and commitment, then I don’t know what else would suffice.
My cup of gratitude towards my parents is always overflowing. Everything that I am and have achieved — graduating from college, coming to the US for grad school, getting a job, buying a home, my hobbies, personality and values — is built upon the foundation of love and support they provided. As I like to sort-of joke sometimes, if my parents hadn’t given me the love and support they did, I’d be selling mangoes by the side of a road in a small village in India, and I wouldn’t be making any money because I’d be eating them all myself (I love mangoes).
But what I look up to most, is the unconditional love they hold for each other: it’s a shining light, and for that light, I’m forever grateful to you, mummy and daddy.
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© Kunal Mehra
This post was previously published on medium.com.
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