Home Death - Dying In The Old Fashioned Way.

Updated: Oct 19, 2021

Created: Saturday, 04 April 2020 02:10

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I am frustrated because my dad is totally conscious of what we are all saying and doing.

 

He tries, but can no longer join in, and this makes him incredibly sad. He tries to talk and inevitably someone laughs at him, or at themselves, for losing patience with him. His words are substituted, inarticulate, whispered, told in analogies. He loses his train of thought.


A conversation with him is a series of jokes, missing a punch line; shaggy dog stories without a central character, or action. We know all the stories, so we laugh at the appropriate times, and remind him of the names and places. It is agonizing and frustrating. And still, I soak them in, because I know there won't be any more.


He walks, until the day he lays down, and starts to let go of life. 


He has Parkinson's Disease and he is always cold. He starts to hate going outside, and it is just too hard to put all those clothes on him. I flash back to my three small children lined up by the door, finally in snowsuits, boots, hats, scarves, mittens, while the prickling heat and sweat are running down my face and back.


Twice or more a day, we are undressing him, then dressing him. We call his diapers, depends. There are bed pads, wet sheets, and wet pants. There are wet shirts from constant drooling. He hates when the aide pins a towel over his shirt, so I cut the backs off some of his old shirts and make bibs. I jest that I am going to upcycle a line of adult bibs made from real clothes, and call it "Clean Clothes." We all try to do everything we can to dignify his experience.


The amount of laundry is insane, so is his appetite.


He still loves to eat, but his swallowing is only 50% effective, which we know, because he goes for swallowing ultrasounds where they measure these things. He is supposed to be eating purees and drinking thickened drinks. He refuses to eat slurpy slop.


So we cook his favorites, we dice his food, remind him to chew, and watch helplessly when he gags.I remember my babies cheerfully jamming handfuls of food into their mouths, before coughing it back onto the table.


I get to know him on a physical level. 


I realize we haven't always been at arm's length. I remember cuddling with him as a little girl, and being replaced by a guitar, or a book. I remember his plaintive query, "Can we do something as a family?" And either dismissing it outright, because I have my own life to live or humoring him with a family dinner, or a weekend at the family camp. I understand my own longing for my kids, and their behavior that hurts. I remind myself they have their own lives to live, and their own lessons to learn.


But now, I comb his hair, wipe his face and nose. I massage his hands, shoulders and back. I touch his arm when we talk. 


Though my dad is only able to peek out at the world, his mind is going a mile a minute. He tries to decipher the code of the Persian rug--the hidden messages it is offering up. A Hospice volunteer reads science articles to him, and they talk about galaxies and evolution. He still studies his disease. He resents his illness and blames doctors for not curing him.


I remind him that at least he is still home and we love him. We care for him willingly and with love. And he is not going for chemotherapy, or living in chronic pain, or in a nursing home.


Hospice arrives.


Someone told me to call hospice early, because he has a ter