When I was a little girl, the space underneath my bed was rotten with monsters.
I had to take a running start to make the three-foot leap into bed, so that a scaly hand or tentacle would not snake out and snag me, dragging me into the dark waiting maw, where they would all fight over my little body, tearing it to shreds, and that would be the end of me.
Now I’m finding that that leap is impossible; it’s futile; the waiting monsters are licking their chops.
My dad is declining rapidly. He’s been hallucinating, confusing familiar sights and sounds with threatening nebulous images. Well, he IS an artist, and my favorite show of his was called “Fantasies and Daydreams.” And now his imagination creeps up on him from behind, casting veils of illusion over his senses. He dozes, and sudden terrors trigger his fight-or-flight response: he flails with hands and feet, and today twice pitched forward, and would have launched himself out of his wheelchair face-first on the floor, had I not been right there to lay a reassuring hand on his shoulder and tell him it’s OK, nothing is going to harm him. He wakes from these fits, thank God, when someone intervenes.
The hospice nurse brought up the possibility of giving him a small dose of Haldol, a major tranquilizer and antipsychotic, but my mother voted it down. She’s worked with the elderly for most of her life, and seen Haldol used as a way of drugging “problem residents” in nursing homes, so that they cease to be a trouble to the nurses. I’ve tried to explain that the idea here is not to drug him into a zombie, but to relieve him of horrible experiences that are eroding the little quality of life he has left by transforming the music he loves into threatening voices, and the beautiful forest where they live, which has always been an inspiration to him, into a hall of shifting and changing faces, leering with evil eyes and gaping mouths.
I think she will reconsider the Haldol shortly, if for no other reason than to relieve herself of the exhaustion of constant vigilance.
Last week he even got out of his hospital bed somehow, in the middle of the night, and must have wriggled across the floor–he can no longer walk, and he can’t control his arms and legs enough to crawl–and ended up wedged between the sofa and a chair. The only reason my mom found him at six in the morning is that the upstairs bathroom was being worked on and she had to go downstairs to use that one. And she heard him moaning, and there he was on the floor.
The drill now is that when he ends up on the floor, we call Hospice and they decide whether to send over a nurse, or to call the First Responders to look him over and get him back into bed. That is what happened in this case, and my mom said they were very rough and literally dropped him on the bed, didn’t bother to get him pulled up onto the head of the bed but left him with his feet hanging over the foot of the bed. Mom tried to shift him up, but couldn’t do it, so there he lay until the morning attendant arrived. Dad was so worn out by the whole process that he was unable to even sit propped up that whole day, and besides, he had hit his head again and was really “out of it.”
In the past, when those scenarios occurred, we would call the ambulance and he would be taken to the hospital, and we would spend an anxious and exhausting eight hours waiting for the CT scan and all that to be done, and he would either be discharged home or admitted for observation. Now that we’re on Hospice, we don’t go to the hospital any more. We’ve all agreed that we are at the end of Dad’s life, and the aim is to make him as comfortable as possible as we wait for the end.
It’s devastating to see the man to whom I have compared all other men, and found them all wanting, wasting away before my eyes. I know I’m not the only one to have this experience; and compared to many others, his deterioration is blessedly mild. He is not in some hospital hooked up to machines. He is in pain, but it’s controllable, and he’s able to sleep most of the time, day or night. He still recognizes me, and we still have our “le’chaims” every afternoon.
Today was different, somehow. I think he was exhausted by the hallucinations and terrors. He had trouble holding his little whiskey cup, one he had made himself (we always have our whiskey out of these cups), and the liquid didn’t always make it exactly into his mouth. The right side of his mouth droops from a stroke he had early on in this process, and his food and drink often make their way down the resulting crease into his beard. My little dog Noga loves to clean his face, if the opportunity arises and no one intervenes–just the way she loves babies, because they usually wear most of their meals on their faces and hands.
Mom has been sick for months. She’s been very short of breath, breathing at a rate of around 30 breaths per minute. Normal is 12-14 for an adult. I’ve been hounding her for months to go get a chest x-ray and pulmonary function testing. Finally she started wheezing badly and her girlfriends began to make comments, so that propelled her to make an appointment with the “doctor.” I put that word in quotes because the person who wears this particular MD is, in my experience, completely incompetent.
True to form, the “doctor” ignored the fact that my mother told her (at least, she SAID she told her) that this has been going on for months and months, and possibly over a year; that she has lost weight, and has trouble sleeping because of shortness of breath. She even has to stop halfway up one flight of stairs to catch her breath.
So she did get an x-ray, results to follow, but was denied the pulmonary function testing that I feel is mandatory under these conditions. Instead she came home with a prescription for an antibiotic and a course of steroids.
The steroids will make her feel better regardless of the cause of the chest issues, but will not address the underlying pathology. And it will increase her baseline irritability and labile behavior–not good.
In medicine we have this thing called “differential diagnosis.” It’s a way of sifting through all the things an illness could possibly be, first casting a wide net and then crossing things off the list as they are ruled out, either by the process of logic or by test results, and hopefully a combination of these, along with a dose of clinical know-how, and the faculty of observation.
So in the years that I have been observing the evolution of this process, I have whittled the possibilities down to two:
3. Restrictive lung disease
I’ve ruled out COPD (Chronic Obstructive Pulmonary Disease) because that is always accompanied by cough, usually productive of sputum, which she does not have.
She did smoke in the past, approximately 40 pack-years (the number of years smoking times the number of packs per day), but quit about 40 years ago, so smoking-related lung cancer is unlikely. However, there are lung cancers that have nothing to do with smoking, or are made more likely by a person having been a smoker in the past. I know the common wisdom is that after a person has stopped smoking for a certain number of years, their risk of cancer is as if they had never smoked, but I have never believed that, having seen otherwise in clinical practice.
Restrictive lung disease happens when, for some reason, the lungs become stiff and cannot move oxygen into the blood. The late Ralph Nelson, MD, a brilliant physician who devoted himself to medical illustration, dubbed people with restrictive lung disease “Pink Puffers” because they manage to make up for the stiffness of their lungs by breathing faster: therefore they don’t turn blue the way people with other lung diseases do. My mother is a classic Pink Puffer.
But restrictive lung disease can result from certain cancers that infiltrate the walls of the lung tissue, making the lungs stiff, necessitating an increase in the respiratory rate, and hugely increasing the work of breathing.
I’m feeling sorry for my mom, even though I don’t love her. I hate to see anyone, any creature, suffer. I suspect that the process of definitive diagnosis will be a long and unpleasant one. Believe me, if I were still in medical practice, she’d have her diagnostic workup done, not yesterday, but a year ago. And then….what would happen to them? I can’t even take care of my dad alone, due to my own health issues, let alone the two of them.
Tonight I feel as if I’m looking right down the throat of the monster that takes lucky people with two living parents and makes them suddenly into orphans.