I thought I was having a heart attack. Had a terrible, terrible pain in my chest. Just couldn't get myself up from bed. Couldn’t breathe for a while. Then had a panic attack when the pain refused to go… if I couldn’t get out of bed, how would I take Baba? An ambulance was due in 2 hours. And Baba’s paid caregiver (the 5th in 8 months) was about to leave in 3 days, after having first threatened to leave without notice. Everything had had to be arranged at gunpoint. There was no room for error. Not even by a hair’s breath.
The ambulance came, but not the one I had booked. There was no AC. It did have the machine, but apparently it had become dysfunctional that morning itself. And the ambulance, for some strange reason, could not find the right road. So I was giving directions over the phone for over half an hour, and then I had to go down and walk out the building, to find it two streets away and bring it – like a truant boy. I have never done that before – walk out to find a vehicle & bring it home; our address is pretty easy to locate in our neighbourhood. It was so absurd: at one point, in that half an hour, I was wondering whether the ambulance will reach the right street. Will reach me, at all.
It was early July 2021, the peak of the second wave of Covid & emergency services were not easily available. The uncertainty in that little window of wait again made my chest pain flare up, after having allowed me to just about do the needful that morning.
After the ambulance arrived, taking Baba down was a quick affair. Everything had been kept ready -- his clothes, medicines, few items of personal care & extra linen. Two pairs of seasoned, hardy hands briskly lifted him out of bed & into the stretcher. He looked frighteningly thin and small even in that narrow space. He didn’t want to wear his diaper, as usual, but I could somehow persuade him to. He looked lost, confused. Tried to hold on to my hand all the while.
The arrangement in the ambulance was not what I had thought it would be. The things were kept as such that I had to sit beside Baba, not facing him. If I had faced him, I could have easily seen the traffic (through the glass part of the door) just by turning on the left (the windows were curtained & shut); but I was sitting beside him, so I had to turn back. But every time I did, the pain in my chest would increase. Even otherwise, it was stubbornly there. I had to keep one hand on my heart, throughout, in a feeble attempt to stave off the pain. With the other, I held Baba's hand. Sometimes, held his body, trying my best to absorb the jerks that rattled his frame & scared him.
I stayed like that, throughout the one-and-a-half hour journey -- somewhere between sitting & reclining, holding Baba, with a hand on my heart. It was that one extraordinary moment in my life when the literal & figurative merged.
I said 'one-and-a-half' hours... but that journey had seemed eternity to me! And I was just hoping and praying that we reach the facility safely. My greatest fear was… not just Baba reaching well, without any kind of emergency on the road (which I frankly did not know how to deal with), but now, almost as much, was that I be able to reach that place in one piece! For 90 minutes, I was sincerely not sure of that.
The last time Baba was in an ambulance was in 2018. An ambulance had then brought him back home -- from a prolonged stay in hospital, after a near brush with death following a freak kidney failure. He had been confined at home ever since; and the last year, mostly confined to bed.
His general health deteriorated in 2020 & things went spiralling down all through that year; but it was in early 2021 that it began going out of control, after dementia set in & caregiving - already precarious - became all the more challenging, as trained help was nearly impossible to find in covid times. He was particularly unfortunate in having a string of unreliable caregivers who took no time in abusing their power over him & take advantage of my vulnerability.
The last 8 months of his life at home is a nightmare I don't want to recount. A point came when I had to take recourse to what I was not even willing to think of, even a year back. It is didi who helped me see the reality of my situation & act accordingly.
To institutionalize Baba in a dementia care facility has been the most traumatic decision of my entire life -- in a way, even more than leaving my husband after 18 years of marriage. It has been traumatic principally for two reasons. The first is cultural conditioning: in our culture, we still cannot think of the elderly living anywhere else but their own homes (an issue that requires a wholly separate discussion, which I’m not going into here). But it is the second reason that made it more painful for me: I had returned to Baba after a failed marriage. And he – old, frail, just widowed – had still, without the least hesitation, received me with open arms. I returned to him, to his home… and then had to shift him from that very home. That is an irony that was/ still is very difficult to accept. And there is an attendant guilt to it that was/ still is very difficult to overcome.
Guilt is directly proportional to gratitude. Baba has been a good father to both his daughters, but my gratefulness to him is of an altogether different order. In the last 4 years, it was very difficult to decide who depended on whom more -- me on him, or he on me. But there can be no denying the fact that I took a very big decision in my life & I could not have carried it out without him.
It's almost a year now that Baba has left home.
I mourn his loss. I mourn his loss to a disease that is random, cruel, incurable. Worse: indefinite. To suffer from it, to deal with it, is to live in eternal limbo. There is a finality to death, which, however painful to the deceased's dear ones, allows them to recalibrate their lives in terms of an absence; and most importantly, is merciful to the patient. That mercy is not in human hands.
Baba is in good hands now, I know. That should suffice. But I really wish he didn't have to go through this.
He has been such a generous man. All his life, he has only given to others -- his time, energy, money, advise. He should have been left with at least some dignity. But that was not to be.He is/was a proud man -- proud to live in a home he owned, on his pension. And till 82, upright, on his feet.
I wish that pride had not been taken away from him. I wish he could continue in the comfort of his own home, in the company of his family.
I miss him. I will always need him.