What is the Cost of Dying?

Despite being nearly 31 years old, I’ve managed to live my life avoiding the confrontation of death. There have been people in my life who have died — my grandfather on my mother’s side as well as his brother — women who performed in community theatre with me only to have passed months later due to some recurring illness such as a fast metastasizing cancer — and, of course, celebrities who seem quite immortal yet who turn out to be very mortal humans just like the rest of us. But I never faced death head on. I never have attended a funeral. Death, despite being one of the topics that frequently preoccupies my mind, has always been this abstract concept third person twice removed.

But as those around me age escaping death becomes impossible and confronting it head on inevitable. My grandfather, long losing control of his limbs due to Parkinson’s, recently fell, broke his shoulder, and ended up in the hospital in much worse health than he was leading up to the fall. It just happened that I am visiting the area, unrelatedly, this week, so I’m able to visit him in the hospital. I went last night and then again late this afternoon. His six children – my father being the oldest – all flew or drove out to my grandmother’s house to discuss plans for their father. They work as a team, despite being a hot-headed, highly-opinionated bunch. Yet facts of this painful process that is the life one lives before death, and the cost of it, were lost in a mix of semi-truths and confusion.

The thing is dying is quite the expensive hobby unless you manage to do it quickly and without much pomp and circumstance. Meanwhile few people like to think or talk about the cost of death until it’s too late. I haven’t gotten my head wrapped around the fiscal world of long-term care and the ability to pay for a certain standard of living in one’s final years, but it certainly seems complicated to understand. While today the government does provide coverage if you make too little money and have not enough in savings, being just a hair over the line can take one out of the running for such coverage while they are still unable to afford reasonable care. Then what happens?

My mother’s mother lives in Las Vegas and not so surprisingly has gambled away $300,000 of savings. Her children don’t want her to suffer but also are not jumping to help cover her expensive care. She apparently receives $2900 a month in social security which is $800 above the limit for medicare or medicaid (again, I’m still unclear what’s what here, but basically if she made $800 less a month the government would cover all her medical costs but because she makes $800 more in social security she can’t afford them.) Meanwhile my grandfather and grandmother are doing what many individuals do and legally trying to spend down their money (because they don’t have a lot of it) so they can get the care that they need, especially for my grandfather right now. My grandmother has been trying to take care of him and has been for a long time now and she is not in the best health herself, there is no way she can take care of him now in the state he is in.

Seeing my grandfather in the hospital so fragile and unable to talk outside of a few mumbles of pain, I didn’t know what to feel, say or do. Could he understand me? Was being there bothersome to him (was he ashamed? Did he want to be alone?) Did he remember who I was? Today he opened his eyes and looked at me, but I don’t know if he recognized me. He did know his son who was in the room — his six children had been taking turns every night at the hospital to stay with him and his wife and their wives switching out during the day shift. Seeing him there in pain and mumbling to himself, his chest rattling with pneumonia with every breath, I thought how horrible it is for so many elders who are left alone – their only company a nurse checking in every few hours with no time to stop and try to understand the partial sentences moaned in between shivers of pain.

My grandfather is not going to get better, but it isn’t clear if he’s going to get worse either, at least not right away. He had at one point in his pain asked someone watching over him to let him die, but of course no one can let someone die if nature doesn’t take its course. He has gained a little more strength and I’m told that in a few days if his kidney holds up (he’s experiencing kidney failure and heart disease at the moment, not to mention a broken shoulder that he’s too weak to ever have operated on to fix properly) he may be released to rehab or a nursing home – one which medicare (caid?) would pay for and one which would not be covered, or something. It is all ridiculously confusing and complicated and not something people want to have to think about at such a difficult time. Meanwhile my grandmother, his wife, is still relatively young, hopefully with many more years of decent enough health to live, but any money that could have been available for her remaining years is eaten by the cost of a life lived in pain and extended as long as possible with very little hope of any major improvement.

I’m not saying that I want my grandfather or anyone to die, it saddens me terribly at the state he is in, but stepping back and looking at how much the cost to keep someone suffering alive for more suffering is, I just can’t help but think perhaps we’re handling death all wrong – but we’re all too scared and sad to deal with it properly so it just is what it is.

Meanwhile, with my father – aged 63 – suffering from terminal cancer among other health issues – I know that my own time to sit in a hospital room with his own body breaking down is only a short time away. My mother is so far removed from her feelings or ability to care about other people that she is always surprised when I say things like I would want to fly out to be there for him when he is in the hospital. To be fair to her he has been a horrible abusive husband. To be fair to him she isn’t exactly the most giving person in the world. Yet even today after an incident where my father got very angry at me because I failed to look up an address I had asked him to drop me off at after breakfast before we needed to get on our way (my fault entirely, but every single thing that doesn’t please him must be this giant blow up disaster, obviously some plan to ruin his life and disrespect him) I still feel like I’d want to be there for him, as he will be in the same state, sooner than later, given his cancer will at some point spread again, and it’s not like far, far off in the future, but probably a few years away…

This is what happens when we get old – new life is formed and old life is faded, both miracles in their own terrifying ways. We spend tens of thousands of dollars per month to support the dying, to extend their lives by months or years, because that is what we do. That is the only thing we know how to do. Death is inevitable and yet we must, no matter what, fight against it at all costs. If we do not stare death in the eye and attack it from all sides despite its undefeated curse, what are we? In all this life we flood ourselves with all this bullshit of meaning when in the end we’re just this faded ghost of who we once were, our veins dark blue lining our pale flesh, our eyes drifting in and out of sight, unable to function yet still somehow considered alive, alive enough to not be dead, yet still we fade, until each and every one of us, in our own time, is no more.

 

 

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