This is where I reveal how completely clueless I was. Obviously, I had no experience with this kind of situation, so I feel that this information is important to share because there may be others out there who are similarly uninformed.
When Dave first mentioned involving hospice in his care, my reaction was “We are not there yet.” We were on one of our walks and discussed what that would mean. A few short days later, hospice was brought up at Dave’s appointment, and it seemed like the right thing to do.
We didn’t exactly start off on the right foot. Hospice was scheduled to come at 11AM Tuesday morning. At 9AM, I got a phone call saying that something had come up so they needed to reschedule for 2PM. As the morning went on, we managed to get Dave scheduled for a procedure at the hospital so I ended up rescheduling again for later that evening.
The person who came out to enroll Dave was pleasant enough. She went through the paperwork and made a point of mentioning that with Capital Caring everything is computerized which means anyone who came out to the house would have access to Dave’s information. She also said that we would get a daily phone call checking in on him. Dave requested a hospital bed and oxygen. She called the order in and also said that she thought having a nurse visit that evening would be beneficial to assess his oxygen needs.
The on-call nurse seemed very competent. She went through Dave’s medical history, medications etc. Since Dave was having trouble speaking this was pretty exhausting for him, and I did much of the talking. She measured his oxygen levels and said that she would put in an order for morphine along with another medication which would ease any digestive issues caused by the morphine. Dave really liked her and hoped she would be his regular nurse.
The next morning (Wednesday) we got a call from the person who was to be Dave’s regular nurse. She wanted to come out and see him. Dave was pretty agitated and mentioned if he had to go through all of the history etc again that he was going to be pissed off. I reassured him that because of the computerization that would not be necessary.
The new nurse arrived while I was out picking up one of the kids. When I walked in the house, Dave was visible unhappy. Sure enough they were going through all of his information again from the beginning. When I asked why she didn’t have access to the information we provided the night before, she said that it wasn’t saved in the system. When I asked about the morphine, she said it hadn’t been ordered. She checked Dave’s oxygen levels, gave him a little advice about concentrating on breathing through his nose, and was on her way. Her plan was to visit again the following Monday.
As the next few days went on, Dave’s swelling in his legs and feet became significantly worse. I called and asked if they had a wedge of some sort that he could use to elevate his feet. We called and requested a chair for the shower. We also asked for some pads to protect his ears from the plastic tubing from the nasal canullas. No suggestions were made to us as to what equipment we might be helpful. At no point did anyone look at the room where Dave was staying or the bathroom he was using and assess our needs. And I didn’t know to ask. Additionally, when I went to the pharmacy to pick up Dave’s meds, only the morphine had been ordered.
On Saturday morning I went to the swim meet with the kids. Dave’s family came over to be with him. I got a text from Jeff midmorning saying that Dave was having trouble with his breathing so they were going to have a nurse come out and see him. I asked Jeff to ask the nurse if we could increase Dave’s Ativan dose since I thought his anxiety was also making it hard for him to breath. I think the kids and I got home around noon. The nurse arrived around 2PM. So a call saying that Dave was having difficulty with his breathing resulted in a nurse visit almost 4 hours later. A different nurse came out and once again she seemed competent enough. She increased his dose of morphine, increased his oxygen intake levels on the machine and said we could give him Ativan every four hours. At this point Dave’s dad (I think) requested a walker since it was exhausting for Dave to be on his feet.
By Sunday morning, Dave had had several episodes of apnea. Once again we placed a call to Capital Caring. The same nurse from the previous day came out. She asked if we had liquid Ativan to give Dave. We did not. No one had suggested that we needed it or ordered it. When his case nurse made his list of medications, I showed her the bottles. She saw that we had Ativan in pill form and never mentioned a liquid alternative. At this point the nurse told us that we should take Dave to the hospital because we didn’t have what we needed to keep him comfortable. Although I was initially resistant, this was exactly the right decision. I thought going to the hospital would mean measures that I knew Dave didn’t want. It turns out that they did what we, with the help of hospice, couldn’t do. They made him comfortable.
At the hospital Dave had an oxygen mask. I remember looking at him and thinking “Why the heck didn’t hospice give him a mask?” When Dave was short of breath, his instinct was to breath through his mouth. The nurse noticed this at her visit – after all she talked to him about concentrating on breathing through his nose. This was helpful advice when he was cognizant enough to think about it. When he was out of it, that oxygen mask sure would have been so much better. It never occurred to me until I saw him in the hospital with the mask on, but it should have occurred to one of the three nurses we saw.
In the end, Dave was exactly where he needed to be. Reston Hospital was everything I thought hospice would be. They made him comfortable, treated him with kindness and respect, and gave us the space we needed. Capital Caring has never followed up with me at all. When the nurse walked out of our house Sunday morning as the EMTs rushed in, that was the last I saw or heard of them. As for those daily phone calls we were promised, we never received one. We were utterly unprepared for what was happening and had almost no guidance from them. I would be very reluctant to use hospice again. If I have to, I now have more knowledge and could be a better advocate. But I thought that was the point of their service. Hospice did not give us relief at all.