4-28-2022 Hospice is NOT "like a party"

(Tricia) 

We are still struggling to establish a routine in our care for Linda at home. One hospice nurse told me that it is "like caring for a baby." I never had children, but it seems to me that elder care is a harder responsibility, primarily because of the emotional toll it takes. I would think that taking care of a child most often follows a hopeful trajectory, in which the child grows and becomes stronger. Taking care of an elderly adult in hospice is absent that same sense of hope because the trajectory is in the opposite direction.

On Tuesday, the hospice nurse assigned to us told me with a smile, "I always say 'Hospice is like a party.'"  When I asked her to explain, she said, "It's a party because it's all about making your loved one comfortable." I know she was trying to be upbeat, but I respectfully disagree. Hospice is many things, but it is not a party.  

Linda has been hanging in there, but she very much hates having to be "handled" (for lack of a better word).  The fluid has stayed away from her lungs, thank goodness, and she even asked Ed and the evening caregiver to sit her up on the side of the bed a couple of nights ago, because she wanted to be "up." I hope we have more of those times.

Today, however, was especially rough. Last night, Linda was in a lot of pain due to her pressure ulcer, so I gave her a "baby" dose of morphine that the hospice nurse told me to provide under those circumstances, in order to "keep her comfortable." This morning, Linda was barely awake and very unresponsive, and when I took her blood pressure, it was only 88/43. I called the hospice hotline in a panic. It was only then that the nurse on call asked if Linda took any medications that could lower her blood pressure, and when I said, yes, she's on medications for atrial fibrillation. Her response: "Oh, well you shouldn't give those medications after you have given morphine."

Oh. Good to know. It would have been nice to know before I gave it to her, at your recommendation. I swear, this kind of thing just never stops. They had a list of her medications when they gave me the morphine, for heaven's sake. When I expressed my concerns about the morphine to the hospice nurse, she diplomatically dismissed the connection. She told me that it was likely a "bug" going around, or simply Linda's body slowing down. Sigh.

Linda's blood pressure has come back up, thank goodness, and everything has become stable. But she has largely slept all day. So, the hospice nurse's dismissiveness aside, I'm going to stay away from the morphine--baby dose or not--except in dire situations. The hospice nurse has ordered tramadol, a pain medication that will be less likely to make her blood pressure dip.

So far, the daily responsibilities of keeping Linda clean, fed, and comfortable have been fairly constant and overwhelming, so in addition to the overnight caregiving support, I'm going to have to add at least a few hours a week of daily caregiving as well. Otherwise, I know I won't be able to do this. I have called the nursing agency to ask for additional coverage four hours a day, three days a week, at least to start. I am hoping that this additional help, along with the visits by hospice nurses and bathing aids, will be enough.  Maybe over time I'll have enough of a handle on things I can drop that back a bit.

I repeat: Hospice is not a party. Not at all.