Ummmm. I Don’t Think So
John has had home health care services since his first hospitalization back in May. He is considered homebound. They wanted to set up Physical Therapy and Occupational Therapy. In order to do that, you also have to receive nursing services. We were hesitant at first, but then thought it would be nice to have a nurse come in once a week to discuss meds, ask our questions, and to check his vitals. It hasn’t worked out very well for us.
First, when a home health care patient is discharged from the hospital, the home health care services have to do what’s called a “resumption of care.” This amounts to asking us brilliant questions like, “What is/are your health problems? Are you able to get to the bathroom on your own? Do you have equipment to help you get around the house?” (that’s always my favorite because they are sitting at the kitchen table, looking at two sets of walkers, a wheelchair, and a chair lift.) Because John’s been hospitalized 5…yes five…times, we have gone through the resumption of care process… 5… five… yes 5 times. Each time takes 45 – 60 minutes.
Today our home health care nurse returned to do “resumption of care.” But I have to go back a bit before I share how that went down….
While John was in the hospital, I became more and more nervous about him coming home and having to spend five hours each morning by himself. I was especially concerned because the hospital nurse and I both felt that his pain medication dosage was probably too high. He was doing nothing but sleeping, he was hard to wake up, and he fell asleep during conversations; all things that I had been directed to watch out for. The hospitalist didn’t have any concerns, even when he had to shake John for several minutes before John woke up. The hospitalist didn’t have many concerns about anything and didn’t need to want to or need to know much about John’s recent hospitalizations or areas of specific concern (are you reading between the lines and figuring out how much I didn’t care for him? Good!)
So, in an attempt to find out what support services existed in my area after having made several calls already, I called the on-call number for home health. A few minutes later the on call nurse came on the phone to talk to me. I explained my situation and my concerns. As I expected, the nurse was stumped. There was really nothing that they could provide to us. At most their nursing services could come in twice a week and check vitals. Then she started asking questions about John’s recent situation and his weaknesses and more about my specific concerns. She mentioned “hospice” and I freaked out. I started crying and asked her why she would mention hospice when the doctors had all told us that his cancer was manageable and treatable. No one had ever told us that he was at or near a hospice stage. I lost it on the phone with her and told her that she had better not use that word again. She apologized and said that she didn’t know his specific situation, and she had no right to mention hospice at this stage. She told me that she would put a note in the system for the social worker to call me on Monday and talk more about possibilites. No one ever called.
Tuesday I went to work for the morning, it wasn’t easy and John wasn’t at his best, but we both made it through. After calling his pain medicine doctors and following their recommendation to decrease his pain meds, John woke up so much better this morning. I went to school and came home feeling so much better about how the mornings would go for him.The decrease in pain meds could mean that the radiation treatment has provided relief by slowing or stopping the cancer, and maybe the one dose of chemo he had gotten also did something. It was positive.
So now I”m back to today’s home health care visit. The nurse came, asked the same questions that we had answered less than two weeks ago, and then started talking about her concerns regarding John being able to stay at home alone while I’m at work in the mornings. She said that it was maybe time to call hospice to see what services they could provide to help. I. LOST. IT. “Why are you talking about hospice? All of our medical doctor teams have said that he has lots of treatment options, none of them has ever mentioned hospice. He doesn’t qualify.”
“Well, it’s in the notes,” she told me, grabbing her tablet and scouring through some documents.
“I know what hospice is. My mother was in hospice. He isn’t eligible. No one has said that he has a year or less to live and he is scheduled for chemotherapy on Friday! You can’t have treatment if you are in hospice.” I said with the words spitting out of my mouth.
“Yes. That’s true, but it’s in the notes, someone said he’s eligible. It’s been really busy since Labor Day weekend and I can’t find it right now, but it’s part of my job to tell you your options, and hospice may be able to help.”
“Stop saying that word! I don’t want to hear you say it again! We have no idea what his treatments will do, and we haven’t even had the chance to really start them. Don’t start talking about hospice. I don’t want to hear it anymore,” I said with my voice shaking and fighting off tears. I glanced at John; his eyes were full and he stared off into space.
“Well, again. I’m just doing my job. I’m concerned about him being here without help. But I won’t mention that word again.”
“Good,” I answered, “until a sarcoma specialist tells us we need to go there, I don’t ever want to hear it again.”
She finished her work very quietly, while I said nothing and John’s eyes returned to normal. He never looked at her again. And she left.
We both shook. In the past, every time she has come to us she has either scared us half to death about things that weren’t even true, or she has missed major symptoms that later turned out to be extremely serious. I guess we should have felt better that she pissed us off today, that meant we wouldn’t need to go to the hospital!
It took several hours to calm down. Even as I write this, I find myself having to repeat over and over that the sarcoma specialist, our oncologist, and ALL of the doctors at Mayo feel that John is treatable and that this cancer can be controlled. We don’t know how long or how well, but we are hopeful for good results. And none of them were concerned about him staying home alone as long as John and I figured out a system that would work, which we are doing right now.
Luckily, a living angel came shortly after to bring us a meal and to sit and talk to us, helping us to forget that conversation. After we ate, we decided to go for a ride, but John wanted to see CeeCee – so I wheeled him over to her before going to the car. Then he wanted to look inside. Then he wanted to get in. The next thing I knew… we were at McDonald’s getting treats and then we spent an hour parked in a spot at a state park, relaxing and smelling campfires.
Uh-oh…. I just realized something. Camping disqualifies us from home health care services because John isn’t considered homebound if he can camp. He can, however… sleep in the camper while getting treatment and still be considered homebound. I wonder if today’s trip cancelled our services? We plan to go again tomorrow just to make sure!
