Under this heading, I’m going to post a few anecdotes of my home-care practice experience. I hope these will be taken in the spirit in which they are intended. That is a window on a peculiar kind of practice which is often difficult, sometimes very rewarding, and always fascinatingly eye-opening. The names have been changed to protect the innocent.
Marge is 85, and has moderate dementia. She has resisted possibly beneficial changes to her Parkinson’s medication, because she doesn’t like change. One time when I see her in her 11th floor subsidized-housing high-rise apartment, she has a new pull-out sofa bed. She says she is delighted with the bed (it’s very comfortable), but I see that the thing is sitting in a partly-open position.
I suggest to her that it’s meant to close up into a chesterfield. There is a metal bar, however, that has to be pushed down, before the front part can be pushed under to form the seat. Marge is unable to do this. I show her how, by leaning down on the bar, even she can accomplish the folding-up. She worries, however, that she will be unable to unfold it. I suggested she could get help from one of her neighbors or from the building manager, but she doesn’t want to bother anybody.
Six weeks later I visit again, and the bed is still in the same partly-open position. I make the same suggestion, but she’s still determined not to bother anybody, not to return the thing to the store, and not to risk losing her bed by folding it up into a chesterfield. And not to change her Parkinson’s medication.
I could tell that Marge’s Parkinson’s disease was quite a bit worse than the last time I saw her. She was nervous, and not interested in my suggestions of increasing her medication. We talked back and forth at cross purposes for about 15 minutes; finally no way would she concede that it was about trying something out to see if it would help. Dead set against change.
I’ll have another go in three or four weeks. But coming off that, and trying to get in to see a new patient in the West End, I was driven crazy by “traffic calming” detours, and ended up having a shouting match with firemen whose truck (while they shot the breeze with bystanders in front of an apartment building where nothing close to an emergency was going on) was parked diagonally so as to block the street . I think frustration must be contagious.
I was called by the long-term care case manager to see Ron who lives in an apartment. My contact is to be Rosa and I have the patient’s apartment number, as well as Rosa’s, in the same building. The building must be one of the most advantageous location in town, with its apartments on the north side facing a view of the ocean and mountains. Even those facing the city have a beautiful outlook. The windows are half-height, typical of the 1960s.
Approaching the front door, I detect a difference between the structure and location of this place, and its condition. The intercom is filthy and broken. There is graffiti around the entrance. I buzz Rosa’s number. Static spits at me after a few seconds, and then I hear the click of the door. The elevator is stinking and defaced inside, and provides a bumpy ride to the fourth floor where Rosa is waiting, a thirtyish pleasant lady. We get back onto the elevator and head up toapartment 902, Ron’s place. Rosa opens the door with her key.
I’ve seen some unbelievable habitations in my work, but this one is about as bad as anything I’ve run into. The carpet is matted with dirt, and dotted with cigarette burns. Across the living room, rubber-backed curtains are clothes-pinned shut, yellowish flakes of rubber backing all over the floor. Boxes and papers are everywhere. The smell is indescribable: very strong mix of dirty man, feces, urine, rotten food, and cat. Rosa takes me through a door to the bedroom, where Ron is lying in bed.
He is a jovial. Lots of chummy well-educated familiarity to let me know I’m dealing with somebody who has not only been to university, but also spent plenty of time in a fraternity house. He refers vaguely and obliquely to “My problem”, but doesn’t answer questions about why he is in bed, why he can’t walk, whether he has any pain or not, whether he’s ever had a stroke before, etc. etc. Rosa shows me a blister pack with medication for high blood pressure and depression. His blood pressure is quite low, and he’s what we call disinhibited, nowhere near depressed. As I pump up the blood pressure cuff I realize he’s drunk, at 11 a.m. He seems to have normal strength and circulation in his legs, but can’t, or won’t, sit up in bed, stand, or try to take steps.
I offer to come back and he accepts. Back out in the hall I asked Rosa what’s going on. As far as she knows, Ron never gets out of bed, drinks all day, eats pizza and Kraft dinner (the former he orders, the latter she cooks), pees in diapers and tosses them into a box at the foot of the bed, and has bowel movements into the same box. Her job, apart from the Kraft dinner, is to clear away the box, but he only allows this every several days, to control the cost. Unbelievable.
On about the third visit I broach the subject of his drinking, he flies into a rage, tells me to get the fuck out, and that’s the last I see of him. Repeated phone calls go unanswered, Rosa tells me he refuses to be seen.