Loose Strife

At this point I don’t know if we’ll actually make it to Boston for the race or not, but tonight I’m feeling a little more optimistic. Yesterday (Tuesday) Laura’s nurse came to the house and we agreed on several changes.
First, we switched over to hospice. Because the visiting nurse association and hospice are the same company, the transition was instant and easy. In fact, her current nurse will stay the same. There are a few advantages to switching. Among them, trained hospice volunteers can help with simple needs around the house. The main need right now is to have a monitor in the house; I shouldn’t leave Laura alone because she is prone to fall. Neighbors and friends are helping out here, too. (If you live nearby and want to help with this, send me an email.)
In addition to extra helping hands, hospice is, of course, prepared for death. I had been afraid to ask what I was supposed to do if Laura passed away. Do I call 911 and begin CPR? Or must I call anyone? What should I do? How much time do I have? I have now learned that it’s my choice; in particular, there’s no legal requirement that I call 911. Considering that I probably wouldn’t want a bunch of flashing lights and paramedics rushing through my house the best action I take is to simply call hospice. They immediately come to the house and take care of all the rest. I’m so relieved to finally know this.
I was also given a small booklet about what to expect and told that the hospice nurses will help me know how much time Laura has. I think this question has been eating away at me for weeks. Nobody seemed to want to make any predictions and I have been afraid to ask. Now I feel a little more relieved that nothing is probably imminent.
The second change was that Laura stopped using the pain patch and started on a morphine pump today. The morphine pump has a button that allows Laura to temporarily increase dosage to almost instantly deal with additional pain. I’m optimistic that this freedom to control her pain quickly will have the additional benefit of increasing her activity. She usually has little to no pain when she’s lying down, but her neck and back pain strike when she tries to rise. Hopefully the pump will give her the confidence to get out of bed more often.
Morphine seems to agree with her much more and today was a better day. She still slept or rested in bed almost all day, but her pain was much less and we had conversations, she ate on her own, came down for a requested potpie dinner, and even had a video call with Heather and her family.
By comparison, yesterday was more of the same tough scene since Sunday. She wasn’t very coherent or aware. I fed her. And she had the first headache and headache-induced vomiting since she left the hospital a couple weeks ago. It was a sad ebb. Laura was struggling to throw up while Naomi bounced on our bed asking to “look at Mommy’s spit-up” and Lily stood in the doorway sucking her thumb, holding her purple blanket, and crying.
But that was yesterday. It seems that the patch just didn’t agree with her. In addition, I found one of her steroid pills this morning that she hadn’t taken, which hopefully explains why she threw up last night, but was fine today.
A hospital adjustable bed also arrived today. It fits right next to our bed and has already made it easier for Laura to eat and get in and out of bed. The girls love “taking a ride in it”.
So Laura seems to be better, although still pretty wiped out. I think there’s a better chance that we will make it to Boston this weekend. With Laura hopefully in a “better normal” than before, with the kids now in school (Naomi in preschool and Lily in kindergarten), and with no appointments on our calendar, there seems to be an opportunity for some peace in the near future.