Dad is lying on his bed, half human and half ghost. He is not as pale as he was during his last bout with pneumonia, but he certainly looks ghost-like. His companion machine with its steady pulse is squirting oxygen into his nostrils with each breath. Dad is wearing pants in bed, a linen shirt and a felt shirt on top of that, despite the open door to the balcony letting in the warm moist Mid-Atlantic summer air outside. It doesn’t take much to make you cold when your body fat is gone. My father, who once towered six feet tall, was now diminished, and now weighs about 140 pounds.
He is lying flat because it is hurts less to lie, but also because standing takes work, which means using oxygen. Standing also requires muscles to move and right now it hurts to move his muscles. It probably hurts because he is not eating much, so to stay alive his body is looking for energy elsewhere and is busy converting the protein in his muscles into energy. All his muscles hurt, he tells me. Dad has the appetite of a bird, except that I suspect a bird eats more. A spoon or two of food makes him feel full, and then he wants to lie down. NPR news fills his bedroom while he lies, but mostly he is not listening. He sleeps a lot: all night and most of the day.
Frankly, there is little incentive for him to get out of bed. When he does he hurts and even with oxygen going into his nose it’s easy to feel winded. His left lung is still there but essentially it is non-functional as it is full of fibrous tissue. His stomach hurts a lot, particularly when standing. The good news is he can still stand. Dad can sort of take care of himself. In reality though he has lost a lot of his agility, so he needs someone to help him into clothes and out of clothes. He gets through the night by keeping a urinal next to his bed. Dad is not so much living as he is existing. His wife (my stepmother) provides companionship and helps in the nursing duties, that is until I arrived.
My father is scared but cannot seem to admit it, and depressed, which is something he will grudgingly admit. The Lexapro may help with the depression, but he just started taking it and it takes a few weeks to have an effect. The psychiatrist cannot see him until mid July. Dad needs lots of things, but mostly he needs to eat a whole lot more. It’s not clear if his stomach can process it.
What Dad needs even more is family and that’s why I made the four hundred mile journey to see him and spend four nights with him. I was there out of love and concern, but also because I am retired, so I can spare the time. He needs someone to listen with compassion. He needs someone who understands his whole person. I can do that, as he did the same with me many times growing up. I can hold his hand. I can make gentle suggestions. But mostly I listen. It’s pretty clear that Dad wants to leave his mortal coil. His way of doing so strikes me as passive aggressive: eat very little and spend much of his time in bed.
While he can walk, he walks haltingly. And he cannot walk too far and he walks somewhat unsteadily. When he gets out of his apartment he needs to be in a wheelchair, and generally that means Marie is pushing him. But at least for four nights it can be me. His oxygen bottle is slung from the back of the wheelchair. There is not much to look forward to in his condition, but there is at least dinner in the dining room of his retirement community, where almost everyone knows him by name. He looks diminished but when asked how he is doing he says “okay”.
It’s in the evening when something resembling life reemerges. He is energized around people and can maintain a conversation and at least for a while forget his pain. He eats little of what is on his plate, but takes sustenance from participating in the conversation around him. Returning home, with me there he will sit on the living room sofa and engage in conversation, but most of the time he hurts too much and wants to return to bed.
Getting him ready for bed is a time consuming and tedious process, which involves disrobing him, re-robing him, and cleaning him in between these states. It means assisting him with flossing and brushing and when not his shower day washing his chest, back and face. It means laying out clothes on chairs, shuffling shoes around and getting his urinal ready for night, all while tethered to a fifty-foot oxygen line. For me it means seeing his 88-year-old body so gaunt, with bones practically protruding from his skin and waiting to assist when he stands and sits. It means buttoning and unbuttoning shirts, helping him on with boxer shorts and pajamas. It means getting him a glass of water to use when brushing his teeth. It’s a ritual that varies little every night.
My presence means a lot but it is hard to quantify. On Friday I noticed him eating a little more and felt a bit cheered. I tried to be nonjudgmental as he tells me how he feels. I encourage siblings via email to call him and cheer him up. On Friday after dinner he goes to his desk and sifts through papers for a little while. This small act is actually a hopeful sign.
Fathers Day means company and phone calls, dinner provided by my sister and cookies provided by my nephew. It means love and companionship and, being my family, a discussion of contemporary politics in the living room where my conservative stepmother offers me reasons why she hates President Obama. My father mostly listens passively until I critique Fox News when he offers me a handshake. My Dad makes a point of being apolitical in front of the children, but occasionally a liberal viewpoint will leak out.
By Monday when I leave he is eating more. I encourage him to keep doing so. To start he needs enough calories not to lose any more weight, but his traditional passion foods like chocolate do little to engage him. I leave him with my stepmother who won’t coddle him and wonder if he will improve or regress again after I am gone. I can’t stay with him forever. I have a wife back in Massachusetts with chronic issues that also needs support.
There is always hope for a recovery, but realistically the best we can hope for is that he does not slide further. His pulmonary fibrosis won’t go away. He will be tethered to an oxygen container for the rest of his life. If things get much worse it will be more than my stepmother can handle. Nursing assistance will be needed and perhaps a nursing home. It’s not hard to predict that if he gets into a nursing home that he won’t live too long. He needs a social life to survive and there is none of that there.
Meanwhile, I hope that he will retain enough muscle mass not to fall, and I hope that some infection does not quickly fell him. He is doing far better (at least so far) than my mother did in her decline. Dying however slowly and incrementally is still an ugly process. Love and companionship help, but it’s not quite enough. He slips a bit further away from me with every passing day. It leaves me sad and melancholy.
Dying is not fair, but it must happen. There seem infinite paths for dying and my Dad seems to be choosing his way through it somewhat. All I can do is try to make things better, which may be giving Dad a sponge bath, holding his hand when he is low and letting him know how much I love him.
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