Hospice means that I have had to dig a little deeper on what the end of life is like for a patient and a caregiver. Hospice Brazos Valley (HBV) provides written materials which give the basics, but I would rather have a deeper sense of what is normal before it happens so I have been periodically reading deeper on hospice and liver disease websites, and watching some YouTube videos, including from Hospice Nurse Julie, so I am clear on what to expect. Roy has asked if his nose bleed is normal, if the temperature fluctuations are normal, and so forth, and I give him the explanations that I have found when he does (they are both normal – the former for liver cancer patients specifically and for all patients on the latter). He wants to know what is happening with his body and I am going to tell him when I can.
We are keeping him “clean, safe, and comfortable.” Keeping him clean is achieved in part with the help of the hospice aides who come and give him a shampoo, brush his teeth, give him a bath, or trim his toe nails every weekday. The other part is achieved by tending to toileting issues with the help of those around me – the catheter is a blessing for this stage. Roy is bed-bound so all of these activities require that he be repositioned and cared for in the bed. Keeping him safe is a matter of repositioning him carefully, gently, and with his help. He’s able to grab the side rail when he wants or needs to roll over onto his side and we have acquired some nifty new draw pads that have handles to replace the folded up flat sheet previously used to pull him up to the head of his bed when he slides down or over onto his side. He is also kept safe by having people here with me – caregivers and volunteers – because he’s a big guy so it usually takes two if not three people to shift him. Roy is comfortable in spite of the itching. HBV adjusted his medications so while he is still itching, and will gladly accept gentle foot and back rubs/scratches, it is not at the level where he is trying to scratch under his skin.
Roy’s preferences seem to be shifting again. He now prefers it be quiet and dim so the TV is not on very much. He occasionally has a podcast playing, but today he shifted to listening through the music that he’s collected on the iPhone. He seems to be past the chocolate pudding but is now onto Drumstick ice creams. He’s had a garden burger (ate the whole thing and some fries) and got the vegan “chicken” and waffle from Mess as a breakfast treat today. He’s had some delicious homemade vegetarian chili and cornbread and a mushroom rotini dish that he enjoyed a lot. The bedside table is now referred to as “Roy’s Bar” because it currently has five insulated drinks (ice water, Apple Izze, orange juice, lemonade, and Coca Cola) lined up along the edge so that he can choose which one he wants for medications or refreshment.
Roy has an official hospice nurse who was coming three times a week. Given his fluctuating temperature, a lower blood pressure, the itching and drowsiness, he received an extra visit today from another nurse (his is on a day-off). The nurses will see him daily for a bit to determine if he has moved into the stage of active dying or not. Roy is still alert, conversing with us, cracking jokes, and so on, but he’s got less control of his hands so his signature is a bit wobbly and his food needs to be provided in chunks that are easier for him to hold. He’s got his phone so he can see texts and emails but if he replies it will likely be dictated as his fingers are a bit uncooperative for small buttons.
We are working on some household business items every so often. There’s a lot of things to verify and prepare for a transition to my upkeep. I’ve hauled out our “Family Emergency Binder” so we can double-check things before his death. We met with our attorney by zoom to handle some things on his dad’s estate. I’m converting the organized chaos that is the Roy Mitchell Method of paper piling (he always has known exactly where to find the specific piece of paper so it worked for him while confounding me and any coworkers at his job) into a folders-in-a-drawer system that works better for me. There’s been a bit of shredding happening too. We are fortunate to have a small long term care policy so getting documents together for making a claim has also been part of this week – it requires forms completed by physicians among other things. [And here is the PSA: if you have not prepared for a family emergency whether an illness or accident or death by getting your records together, please do so and get that will, advanced directive, power of attorney, and medical power of attorney paperwork done. It matters when someone cannot speak for themselves.]
Roy continues to have visitors and has gladly seen Rane, Dana, Clair, and Don along with those who are continuing to help care for him (Cathy, Kathy, and Becky). He also got to see Shane who came by to address the seeping toilet and Ashley who was here for the scheduled housecleaning. He’s had a chat with the HBV social worker and has interacted with all the HBV nurses, aides, and the caregivers. He does tire easily so any visits do need to be kept to a shorter time frame; you can arrange a visit with me so we can work around other care activities and not overwhelm him. It’s important to handle him with a gentle touch and you may have to bend down to hear him – his voice occasionally becomes a whisper – and he’s apparently going to do his best to make each person cry. Sheva told him during a video call that he had met his quota and was not allowed to induce tears for anyone else today.
I am having moments where it hits me a bit harder that he is truly dying. For example, rubbing his feet at his request and realizing that he isn’t going to stand up again. His death has always been a shadow part of our lives because his liver disease has shaped our lives greatly – so it is not a complete surprise, of course, that we are experiencing this, but the actuality is still a bit of a walloping smack in these moments. Roy’s also wrangling with the losses of what will not be – he won’t go on a walk with me again or visit Baltimore to see the Orioles or do other things that he hoped for if he got a transplant. He’s coming to terms with the end of his life and accepts it as the natural progression. He’s received some lovely emails and texts that allowed me to see what he has meant to other people. We spend some of our time talking about what we most enjoyed together, what our impact has been on each other, and considering what he might like, if anything, to mark his passing. He’s still thinking on that one – things he wanted in 2004 are not quite right now in 2026.
I am not sure he is truly in the active dying stage, but if he is not there now, he is edging that way, so I’m watching and holding his hand as he approaches it.
Waiting 
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