My Hospice Experience

As I have been looking back over this past year, I realize how much of November and December of 2021 was a blur to me. Life crawled by, yet went so fast. On December 21st of 2021, we signed Elise into the care of hospice. It was a truly numbing experience. I "knew" it was most likely that Elise would pass away before I would. But, to sit with that realization as it happens was pretty surreal. We were as "prepared" as could be I believe, but that did not make it any easier. 

First, it is probably important to note that I didn't want her to die at home. The idea of it all was terrifying to me. My biggest fear was that I didn't want her to "haunt" me in some way for years to come. I didn't want to see her image as I rounded every corner and walked into every room. I did not like any of it! As with all good marriages, we felt differently about this issue. I was honest from the beginning that my biggest issue was fear. During Elise's life, I sat with her through so many experiences that terrified me that I cannot even begin to count them. This would be no different. Home was where she, and we, belonged. 

We are fortunate to have Good Shephard Homecare and Hospice here in Manhattan. They are a great organization that provides palliative and hospice care both in homes and in their own facility. With Christmas coming 4 days later, there was a push to get everything lined up for her to ensure that we would be set over the holidays. In the end, almost none of the services were needed. She passed away peacefully, at home, in the early morning hours of Christmas Day.

My initial experience with hospice was frustration. At the time, I wrote it off as we were going through a stressful time, which was true. After thinking about it for a couple of months, I began to realize that hospice wasn't really all that different from our daily life. The one exception is that they handled everything related to the pharmacy. We had more than 10 years experience dealing with pharmacies in Elise's care. In our house, we navigated the system far better than most people. Working with the pharmacy was something that we did many times per month over those 10 years. So, their being "helpful" was really more of a hinderance to getting things done quickly. I don't believe that most people would have this same sentiment. But, I have come to realize that most people didn't lead the type of life we were leading. 

When I look back at Elise's life after cancer, it could probably be viewed as a 10+ year hospice experience. Kelly and I, and several helpers over the years, provided around the clock care for her 365 days per year. If she needed moved - we moved her. If she needed fed - we fed her. If she needed cleaned - we cleaned her. If she needed medicine - we medicated her. It was a full time job for multiple people for several years. Hospice care was no different. Deciding to keep her at home, as it turned out, really was no burden at all. It was no different than it had been all that time. We were used to tracking everything that was happening with her, giving medicine at specific times and overall managing her care. 

As I think back about the decision to put her into hospice care, I think it really was the mental shift that is most challenging for me. Like many, I viewed it as "throwing in the towel". We spent 10+ years pushing hard to help her make improvements, increase her quality of life, and searching for the next thing to help "cure" whatever was ailing her at the moment. But, signing the hospice paperwork was an admission that she would not get better. Outside of a miracle, we were out of options. 

When we left Children's Mercy, during one of her stays the last two months of her life, we had a legal document that allowed us refuse further treatment for her in the instance that she would experience something major (like heart failure for example) while she was at home before we put her in to hospice care. This was a document that we could use at our discretion. Nobody had to know that we had the document. And, to this day, I'm not positive we mentioned it to anyone. In the State of Kansas, even the parents cannot refuse life saving measures for their child without a doctor signing off on it. With this paper, we could stop the EMT's from treating her at our home and stop a local medical team from going any further. Think of it like a do not resuscitate order, but for overall medical care. That piece of paper, and hospice care, are the two heaviest pieces of paper I have ever signed in my life. No parent should experience that. 

Abby painted the image in this blog as Elise's last Christmas gift. Thanks to Elise's last helper Emma, this had become kind of a mantra for Elise the last couple of years. Honestly, she probably didn't need the reminder. She did big and scary things every day. However, I have continued to appreciate it and use that mantra still today. 

Would I recommend hospice care for others? Absolutely! While I cannot say that it made everything "easier" for us, it was still worth it. The night Elise died, there were no lights and sirens. No gawking neighbors. No emergency situation. Instead, it was a call to the nurse line, a home visit from the nurse, and ultimately a visit from the funeral home to pick her up. No bright flashing lights and loud radio chatter. Instead, it was an unmarked minivan and two well dressed gentlemen as professional as can be. Quiet. Peaceful. Respectful. Not scary at all. 

In one of our last hospital stays, the palliative care team told us we may eventually view the hospice opportunity as a gift. Most people don't get to plan how they leave this earth. I believe that Elise did everything she could to guide us through the process and I believe that we honored all that she wanted and needed until the very end. It truly was a gift, not just from hospice, but I believe from Elise and God as well. Not scary at all. And I am thankful for that.