An Absence of Family:  The Dying Patient

Names and situations have been changed for privacy.
T. D. Helfrick, R.N.
As a Hospice nurse, I see many families who are grateful for our presence in their homes. This story is about a lack of such persons. Situations and names have been changed for privacy.
It was a lovely warm day, and I rang the doorbell. "Hello. My name is Toni and I am a Hospice nurse," I said. The woman did not smile. "This ain't the door you're supposed to come through !", she said. I apologized, and asked her to direct me to the door of the patient’s room...She sent another person, a young girl, to take me to the ‘proper’ door.
I suppose I should have noticed all the clutter in the front yard, the lawn not having been mowed, and the hanging flower baskets, with dead flowers. As the daughter beckoned me inside, I saw an extremely cluttered living room, with papers, books, cups and everything imaginable. The patient was given his own room. ‘Almost like a sentence’, I thought. The man was never to get out of the bedroom/bathroom area. I was then told to ‘Fix my father some supper. He's hungry.’ I told them I needed to examine him, and check his blood pressure. ‘He don't need that, he's just hungry’, she said. That remark I ignored. They pointed toward the kitchen, and said I could fix the patient some food in HIS kitchen, and they told me I HAD TO make this man supper. The patient, who I will call Joseph, was very ill, and needed a lot of my time. So I thanked the family, and assured them that he would get nourishment at dinnertime. ‘Hey, lady, what the hell is nourishment?’ I just smiled and said, 'food to eat'.
I glanced over at the sink, and noticed several days of dirty dishes. The walls were stained, the bathroom dirty, and the patient's room was horribly cluttered. I not only didn't LIKE these people, who were very rude initially, they wanted NOTHING to do with their father, and, they didn't want to see him, either. In retrospect, I believe they were embarrassed at the way their home looked, but they didn't have the energy, nor the desire to clean it.
The patient, the grandfather or father of all those in the main part of the house, was now isolated to this one ‘room with a bath’. And me? I could use the sink if I wanted to. Yuck ! Luckily I take my own ice chest and take all my food with me and eat it on my own plastic dishes. I assessed the patient, Joseph, and found him to be critically ill, and unable to walk . The patient, prior to getting lung cancer, was now unable to walk anywhere. This man, prior to getting lung cancer which has now spread to his bones and his brain, was very friendly, despite the gravity of his illness.
I asked Joseph what he likes to eat for supper. He said he wanted a steak. I then went out to the kitchen freezer, and since Joseph had no teeth, I just told him I was cooking his dinner. They had a microwave, and I cooked him some soup and a chicken pot pie. He was very pleased with his food, and he ate most of it, despite the inability on my part to find enough room to put all his food on the over bed table. Finally, I just moved it all to a cardboard box that was empty, and put it under his bed. Joseph wanted to thank me for having cooked his dinner, and I told him I was happy he was hungry. He then shared with me that this was the first food he had had all day! I wasn't sure if he was telling the truth, but he was emaciated.
Joseph has lost his equilibrium, which is why he cannot walk to the bathroom any longer, and he needs assistance using a commode. He also had a 30 foot piece of oxygen tubing, so that he could move about in the room, and he was unable to walk at this point. I then took the 30 foot tubing, and told him it was "the wrong kind" of tubing, and he did accept that.
When he realized he couldn't get up to use the bathroom, he was not thrilled, but annoyed. Joseph has been at home after radiation to his kidney tumor, and has also been through chemotherapy, which is fortunately completed, for now. Joseph has some delusional behaviors, and he speaks to other persons that he can see (a hallucination). He is somewhat confused, likely because he cannot get the air exchange that he needs because of the lung cancer. One might say that Joseph is "an accident waiting to happen". He needs a maid, a cook and a nurse and the patient might fare better in a Nursing Home facility, as he will be bathed,given the correct medicine, and HE WILL ALSO BE GIVEN FOOD at mealtime.
When I went home that evening, I was exhausted and kept trying to keep Joseph from falling. Fortunately, Joseph had one "nice daughter", who said she would sleep on the couch in the living room, and she would give him his pills as he needed them. WHAT PILLS?? This patient has specially ordered medications, and they either give the wrong things, or they don't give ANY, and when the next nurse comes, he is in terrible pain.
When I got home that evening, I thought to myself the things that Joseph had said to me. He was one of seven children, he was the oldest, and he had six children of his own, and also grandchildren and three large dogs. Yep, they came into his room whenever they wanted to see him, and it made Joseph happy. I was worried that they might have fleas or ticks, but the others in the family summoned the dogs back to their part of the home.
I did not do the dishes, not because there were a few plates and cups to be washed. This man was being given a new dish each time he was fed, and that wasn't often. Joseph had bags of candy, snacks, and whatever in his room. I looked for ants, but did not see any. But the sink, filled with water that had an indescribably ugly color and odor, I will not touch. I am here to care for this patient, despite the cries of the moochers who have lived off his "check" for years, and most of them only work part time, and none of it is ever done at home.
It did upset me that this poor man who was dying, was being IGNORED. I recommended to Hospice that he might fare better in a Hospice care center. That way, he will have been bathed daily, eaten three meals a day, not be isolated to his bed, and would be in a clean place. I also worried about vermin, such as roaches, waterbugs, and etc. When a home or apartment is not cleaned regularly, it's almost like sending out invitations to the bugs to "stop by and eat". Fortunately, Joseph was placed in the care center, and he did well. I also found that the other siblings were very angry that they needed to pay bills on Joseph's home. I believe I have found a better place for Joseph. I think when people take, and take, and never are able to give, somehow, someway, they might meet up with misfortune themselves. I'm not suggesting it, and I'm not praying for it, (I only pray for positive things), but I think I've seen such things happen a few times too many. Joseph is not the only elderly person who is being exploited, there are several thousand, and that is only a conservative estimate.
Joseph has passed, but he did live out the last six months of his life in the Care Center, and he was kept comfortable. I feel that I was able to help him live out his last days more comfortably.
That is, actually, the essence of Hospice.
(c) T. D.Helfrick, '08