top of page
Search
  • Writer's pictureKatie Beucus

How We Got To Hospice

I should be folding laundry or cleaning up from dinner or taking a shower or ordering the new appliances I’ve been putting off the last two weeks.


But instead I’m thinking about January 26th,  2023. The day Aaron decided it was time for hospice, a vivid memory triggered by drawing up Haddie’s antibiotic tonight. This might be the hardest one I’ve felt compelled to write, but I want it out of my head.


I walked into Aaron’s hospital room that morning, lights out, shades drawn, blankets pulled over his head, breakfast cold and untouched on his tray. I set my backpack down and gently sat at the edge of his bed and placed my hand on his shoulder. I was greeted with a muffled “morning”. I knew better than to ask how he was feeling. He hated that question just as much as cancer itself. Besides, I could tell just by looking at him.


The pressure in his head was unbearable. Even with round the clock Dilaudid and rescue doses he sat at a pain scale of 8. I gently pulled the sheet off his head and he peeled his beanie up from over his eyes. That’s when our eyes met, his blurry trying so hard to focus on one of me instead of four and one pupil dilated. Instant silent tears from both of us.


I gently ran my fingers through his new baby soft hair and stroked his forehead softly with my thumb trying desperately to bring him any level of comfort. And then he said it. “I’m done Katie. I am fucking done. Please take me home.” I sat quietly for some time and then asked, “Is this really what you want?”


He confidently replied, “I am done. I am done with hospitals. I am done with being poked, with being an experiment. I am done with people telling me they don’t know what is wrong with me and they can’t figure it out because trying to would probably kill me anyway. I am going to die and I want to go home, to hug our kids and die in our bed with the widows open. Is it weird for you if I die in our bed?” Through tears we laughed and I told him of course I didn’t think it was weird.


And so I set to work coordinating getting Aaron home, ultimately making arrangements with hospice on my own. Had we waited on the hospital the kids, our family and friends would have lost at least two additional days with him at home. That wasn’t an option and as soon as Aaron knew the wheels were in motion to get him home he perked up. He asked for hot coffee and for me to open the blinds. He regained the will to push through his pain and see joy wherever he could. The last day he asked for my brother to come visit and we all sat and laughed like old times waiting to be discharged, the boys making one final memory as Aaron nearly trash canned himself transferring to the wheelchair. Thank goodness my brother was there to catch him because the CNA definitely was not! I’ll never forget those two wheeling out of the hospital, that look on their faces that was always a dead give away they had been up to no good.


And here’s the thing. There was a lot of reading between the lines we had to do in terms of Aaron’s status with this particular team in the very end. No one ever outright said, “you are dying.” They never said, “You have AML from treatment and likely leptomeningeal disease.” They couldn’t because we couldn’t test, the risk far outweighed any benefit, but they all suspected. Platelet transfusions getting crowded out within 24 hours, enhancement of the leptomeninges on MRI, binocular diplopia. But when you donate your body to science your family gets to learn a little more. Speculations confirmed, closure of sorts.


And because Aaron was inpatient, we did not have direct contact with his primary oncologist in making the hospice decision. But the Monday after we came home I received a text from her with the following, “I fully support yours and Aaron’s decision. This is such a bad cancer and I am so sorry we don’t have better treatments. Aaron has been so gracious and wise this whole time. I am glad he is getting great care with hospice, please reach out anytime.” We did not need validation, but her words gave us significant comfort. She is younger, but she was like our cancer Mom. So compassionate and sincere always and she still checks in on me and the kids.


Through all of it, hospice was one of the greatest gifts. I cannot tell you how many times in his final week Aaron said, “This is amazing. I am so happy we did this.” As hard as it was, I was too. Without having the tools I needed at home and the training from hospice, I absolutely would have had to call an ambulance two days before he died. For the first time ever. And he would have died in the hospital. But I didn’t. I got his pain controlled and he spent the entire day with some of his best friends. And he thanked me again and again. And he died in our bed, with the windows open, exactly how he wanted.


The absolute hardest thing I have ever done in my life is to love someone so much I had to let them go. I had to help him go. If you have someone like that in your life, hang on tight. Tell them how you feel and often. Say sorry when you should. Don’t waste time. We always think we have more of it, but I for certain know time is one of those things that’s just never guaranteed.

148 views2 comments

Recent Posts

See All

332 Days.

It has been 332 days since Aaron turned his head ever so slightly toward me, in the dead of night, as I watched his final breath escape his mouth along with the word “love”.  It’s incredible how clear

2 Comments


Christine Kailing
Christine Kailing
Sep 07, 2023

My daughter Bianca sent me your diary entry about the last days of your husband. I’m sitting here crying. It’s so sad. No one should loose their husband that young. You are a brave woman and God bless you for all you done for him. I live in Pine Valley if you ever need to talk. Bianca says she went to school with you.

Like

mandd5girls
Aug 31, 2023

Just the greatest gift ever. Thank you for all you did. ❤️❤️❤️❤️

Like
bottom of page