Today (Tuesday) marks three weeks since Penny came home from the hospital and entered hospice care. I can’t decide if it feels longer or shorter than that.
Mostly it feels sort of timeless. That’s one reason why it’s been over a week since I’ve posted. Also, there have been no dramatic events or out-of-town visitors to report about. It’s been a quieter week in Lake Woebegone.
Wound management. The biggest news of the week is related to wound management, and the news is good. After struggling with the wound manager we had been using, I suggested to the nurse that we instead see if we could find an ostomy appliance that might work better. She went online and found something to order. A couple days later it arrived, but it was too small.
So a week ago Friday, I went online to see if I could find the order number for someting larger. I called the hospice nurse phone line to see if I could get the order placed. The person who does the ordering was out for the day, so the order couldn’t be placed until Monday. On Tuesday or Wednesday the new supplies arrived, but upon unpacking, we discovered that we had only received one part of the two-part system. So we had to order again. Finally, on Thursday night we had the correct supplies – both parts – and were ready to give it a try. It was still going strong Sunday morning, when we replaced it just because it had been so long. It seems it could easily have gone longer. The Sunday replacement is working well, too.
It took more than a week to go from this idea to having the stuff we needed, but it now seems like we will be able to go 3-4 days between changes. This is SO much better than some of the days when we changed it 3, 4, or 5 times in 24 hours.
The wound manager on the other side has been doing pretty well also, with changes approximately every two days.
Sleep. Penny continues to mostly sleep. I’m guessing she sleeps close to 20 hours per day. Most of the awake time is in the morning and associated with getting up, getting breakfast, dealing with wound management, and on some days a visit from the hospice team.
The rest of the day consists of sleep punctuated with brief times of wakefulness. Sometimes these just amount to saying a sentence or two. Other times there is a short conversation, or a snack, or a trip to the bathroom.
Mobility. Penny continues to walk short distances with her walker, but it is getting more difficult and she moves more slowly. I’ve taken to walking behind her with one hand on her shoulder and the other on one of the “handle bars” of the walker so I can help guide the walker and will get immediate feedback if she seems unsteady. But so far we have not had any near falls.
Confusion. Starting last Wednesday, Penny has experienced some mild confusion. That she can’t keep the days straight given how much she sleeps and the similarity of one day to another is not surprising. But she might also forget if and what she has eaten, or whether we have or haven’t done her meds, or who is planning to come on a given day, and at what time. She’s aware of her inability to recall these things, so she just asks frequently for reminders.
Today she also asked how long she’d had been in hospice and seemed a bit surprised it had been three weeks already. And the other day when we were talking about dates and days of the week, she said, “I think I lost a week in there.”
Last night during the night and again early this morning, I heard her rustling in bed and went to check on her. Both times she was already sitting at the edge of the bed and preparing to stand up and walk somewhere. She seemed to have forgotten that she would need her walker (and my assistance) to do that safely.
Penny also struggles at times to come up with words, often making interesting substitutions. Quite often she refers to her GJ tube as her “pole”, for example. It’s interesting to see what substitutions she comes up with (and if I can figure out what she actually means). Maybe she’s just doing this to keep me mentally sharp.
Overall, things continue to wind down, slowly.