CAREGIVING: This week was another wild ride emotionally. The big debate was whether Kathy should be taken to the hospital. I was having second thoughts and third thoughts and more.
I mean, it isn’t like it is life or death… Oh, wait it is.
These are tough decisions, and probably some of the toughest ones you and I have to make as humans. It would have been much simpler if Kathy had discussed what she really wanted before she lost the ability to discuss what she wanted. But, part of Kathy’s version of Huntington’s Disease meant she was hyper-anxious and angry before I started really taking care of her. There is nothing like tiptoeing on eggshells and asking, “So If you get sick, how far should I go?” We tried and did write down a few things. So, I knew she did not want a lot of intervention, tubes, and pumps. And I knew for sure she wanted to die at home.
Last Monday: The highlight of the previous week had been the addition of morphine and oxygen to her treatment. Shannon, Kathy’s hospice nurse came for her planned visit on Monday. Her oxygen saturation was decent. She was breathing well and she seemed comfortable. Then she was listening to her lungs….
“I can’t hear her breathing in her left lung at all.”
Then she added, “If this were a regular VNA (Visiting Nurse Association) visit I would be discussing whether to bring Kathy to the hospital. But since this is a hospice, I am not sure what you want to do.” She explained that if I were to bring her to the hospital, they would have to discharge her from hospice. Kathy could have a collapsed lung or pneumonia again. There could be fluid filling the lung, or fluid filling around it. At the hospital, they would do a lot of tests: x-rays, CAT scans, and blood tests. More than likely they would drain the fluid by pushing a long needle between her ribs and into her lungs (called Thoracentesis). “It is very uncomfortable. They would probably put her on IV antibiotics.”
I started asking a lot of questions:
Was it a day trip? No. She would most likely stay in the hospital until it was safe for her to go home.
Would it be hard to get her back on hospice? No. She also said I would have to decide based on what I think Kathy would want. I started to think about how Kathy hated visiting people in the hospital; let alone being in one.
Is there a chance she wouldn’t come home to die? I started to think about my mom. She fell in her apartment. The rules were that the EMTs had to take her to the hospital. She never went home again. There was a chance Kathy wouldn’t make it home.
How much time does she have? Shannon said that there is no rush to decide. “Kathy is breathing well with one lung. We have patients that have had one lung removed, or that have been able to live with one lung for a year or more. Kathy’s oxygen levels are good.”
Were her already weak lungs compromised by not moving her around enough? I told her that because of the bed sore, we had kept her in bed, so we could take care of the wound. She thought that was a definite possibility. “Movement is good for all of us. If we could move her to her chair and do more flexing of her muscles, it might help drain some of the fluid out.” I told her I still had a round of antibiotics (Augmentin) left over from a previous infection. Would that help at all. She said it could. “It can’t hurt. Just don’t plug up the feeding tube.” (The pills are huge.)
That evening when Peg arrived to take care of Kathy, I told her about the nursing visit and that my inclination was to keep her here and comfortable. Peg disagreed. She felt I should take her to the hospital and do everything possible “to make her comfortable.” We had an argument because I said Kathy did not want a lot of life-support done.
Peg brought up the feeding tube: “Then why did you make her have a feeding tube?” I explained that “Originally she didn’t want one. She wanted to eat food. But she changed her mind when she stopped being able to swallow and had pneumonia.” In the hospital, I asked whether she was “…ready to die yet?” And Kathy whispered, “I want to live.”
Peg said I should talk to as many people as possible about it, so, I don’t have any regrets. (good advice) She admitted that she was religious and if it were her sister, she would do everything possible. That night and the next day I talked with my sisters, Barbara and Lisa; and my brother, John in Colorado. Then I called two of Kathy’s sisters — Mary and Trisha. They came to help when she was in the hospital with pneumonia, so they had some first-hand experience. In all cases, we just talked. They all would support whatever I decided to do. The one thing I decided I would do was to email the rest of the family rather than call everyone, once I decide. That way the information is the same for everyone.
My head was spinning. I started to think that IF she goes to the hospital, I need to make sure it is covered by her insurance. Mercy Hospice won’t be involved at all. I called Doctor Jackson. If you remember an earlier post, she WAS Kathy’s doctor but is moving to Nashville in September. Kathy’s new primary care doctor would be Dr. Michael Rosen, the medical director at Mercy Hospice. That was supposed to start on August 1st. I thought. But this was still the last week of July. Doctor Jackson called and we had a good talk – about what might happen if she went in; the tests and procedures and treatments. She said she couldn’t tell me what to do, but it is a tough decision to make. She said it seems like I am leaning toward bringing her. I told her “I go back and forth.”
I called Miguel at NaviCare, her insurance company. I explained the lung situation and that I would also replace her feeding tube at the same time. I told him I spoke with Doctor Jackson. He said, “Well, Dr. Rosen is her doctor.” I said I thought that started in August. He said “No. It got started immediately. I would call Dr. Rosen to discuss this first.” I asked Miguel if Kathy had to go to Mercy Hospital. He said it was our choice. (Mercy Hospital would have the advantage of being in the same electronic records system as the hospice and her doctors.) His only preference was that we try to use National Ambulance as a scheduled trip rather than dialing 9-1-1. I said I would if I could, but since we would have to start at the ER, I wasn’t sure yet. I wasn’t even sure she was going yet.
I tried to get in touch with Dr. Rosen through the hospice. When I called I talked with the practice manager. She talked about different possibilities and talked about outcomes. She didn’t push me one way or the other. She just said she knows this is tough stuff. I told her at this point I was still trying to educate myself as much as I can.
Dr. Rosen called back a few hours later. He was very calm and said he was convinced that the hospice could keep Kathy very comfortable until she passes. He asked if we were going to a specific Huntington’s clinic and what did they say? I told him that we were going to UConn’s HD clinic. But I haven’t spoken to them in quite a while because it was impossible to bring her to Connecticut. He urged me to get back in touch with them. He said he can keep up with the latest things in general medicine, hospice medicine and oncology (his specialty) but he can’t keep up with the latest in every field. He said he would call them and get them talking to me again. After speaking with him, I was sure I would keep her at home.
Robin from the UConn HD program called. It was good talking with her again. She said Dr. Rosen had left a lengthy voicemail about Kathy and wanted to get the center back involved. I explained what the latest issues had been and what I was thinking. I also said that we were still using the same psychiatric meds she had prescribed about a year ago. She said, “Oh, gee! We better look at that. She probably doesn’t need all that.” So we went through the med list and she wants to cut one thing at a time. First it will be the liquid Depakote (or Valproic Acid). I’ll give that to Kathy once a day instead of twice for a week. Then we will work at reducing the others. We talked about weaning her off Zyprexa and trying Haldol again. A few years ago she had a reaction to Haldol (or Haloperidol) where she started to panic. At least, that was the theory. But now it would be different.
Robin emailed another release form so that she could give out information to the hospice about meds. And I emailed a sheet with her current medicines.
So, now it is another week later. Kathy is still doing okay. Her oxygen stats are still good. And there is even a little bit of breathing sound in that left lung. She went from being constipated a few weeks ago; to getting an enema; to having diarrhea for the better part of the week, That was probably due to the antibiotics I gave her. But she is comfortable and sitting in her chair. The aide schedule is up in the air again but might be settled again this week. And I will finally mow the lawn.