5-12-2022 Two rough nights this week

(Tricia)

Linda has now been home since last Thursday, and once again, we’re trying to establish some level of stability and routine. But we’ve still had some tense moments. 

Our furnace and air conditioning decided to stop working about a couple of weeks ago—given that it was spring, we thought we had enough time to replace it before it got too hot, but then we saw the forecast. Of course, in St. Louis, the temperature would hit the 90s in early May! We had to go with the one company that could replace the furnace and A/C quickly, but even then, the company could not get to us until Tuesday. That meant we had to make it through an 85-degree day on Monday and a 90-degree day on Tuesday, until the new unit was installed.

We thought we could make it by using fans and keeping the curtains drawn, but by mid-afternoon on Monday, the house was already up to 78 degrees. Linda’s room was still at around 76, with the fans going. But when the hospice nurse came, Linda’s oxygen levels had dropped to 85 (above 90 is normal), and by the evening, she was starting to run a temperature. We had to take her off the cannula, put her on a rebreather oxygen mask, and increase the flow of oxygen to get her oxygen back up in the low 90s. Even worse, her temperature began to rise, getting as high as 100.8 degrees.

Even though the house was warm, Ed, the caregiver, and I were all still comfortable. So, my mind went straight to the worry that the her temperature was a symptom of underlying infection. We began cooling her down with wet towels and ice, and Ed ran out to Home Depot to buy a portable air conditioning unit for Linda's room.

Once we had the portable A/C running, Linda's temperature quickly came down to her normal 97-ish. By Tuesday morning, Linda was awake, responsive, and hungry once again, with her oxygen levels back into the upper 90s, using just the cannula and a lower level of oxygen. While it was a relief when we realized that she had just overheated, it also was an indicator of just how fragile her system really is.

By Tuesday afternoon, our new A/C unit was running and the house was comfortable again. But the whole situation was incredibly alarming. I feel awful that we put Linda through that, but we really thought we could make it the one day. But once we knew we would have no air conditioning, we should have had the portable A/C ready to go. Lesson learned.

Then, last night, we had another crisis. The caregiver and I were getting Linda ready for bed when we realized that her catheter was leaking. So, I called the hospice nurse hotline at 10 p.m., and Pathways sent a nurse to the house to replace the catheter. This required moving Linda a lot not only to get her cleaned up and her catheter replaced, but to get her off that cursed pressure sore at the base of her spine. It really took a lot out of her, and it took a lot out of me as well, because there is just so little I can do to make things better for her. :-(

That pressure sore, which we think actually started forming as far back as when she was in her coma at St. Luke's, is causing more suffering than all of her other ailments put together. Prevention is certainly worth more than a 100 pounds of cure where pressure ulcers are concerned. That's yet another "if I knew then what I know now" situation. If I knew how easily pressure ulcers can form and how insidious and hard to treat they can become, I would have been watching how often she was turned while she was in the hospital and at NHC far more closely. Anyone who has a loved one confined to bed in any kind of facility needs to keep an eagle eye on the situation to make sure they are in the proper bed (a low-air-loss air mattress) and they are turned regularly.

For the last two days, Linda has been asking to get out of bed, which is also incredibly hard to hear. She has weakened to the point that getting her out of bed isn't comfortable for her, no matter how much she wants to be able to do it. However, today, her caregiver was able to get her to the side of the bed, and then lift her into a chair. At first, Linda was panicked and that darn sore was causing her pain, but eventually we got her positioned on her special pillow in a way that takes the pressure off. She was able to sit through an episode of Dick van Dyke in "Diagnosis: Murder," which was at least something!

That said, once they got her back into bed, she was in pain once again, and that is always hard to take. But tonight she ate a good dinner, and she is now resting quietly. Ed and I just had an enjoyable conversation with the nighttime caregiver, who let us know that Linda is "tough as nails." Apparently, last night, the caregiver asked Linda if she could turn her, only to be firmly told "No," over and over and over again. The caregiver had to sweet-talk Linda for a full 30 minutes before she was allowed to change Linda's position!

Even now, Linda remains a challenge! I'm still trying to figure out how to help her feel more in control of herself, although that is incredibly difficult in the current situation. Maybe

Today was also a sad day--a friend who I went through my interior design program with ten years ago died in a car accident earlier this month at only 40 years old. This evening was her visitation. I almost did not attend, given all that's going on, but Ed encouraged me to go. When I got there, there was a line out the door of people there to pay their respects. She was really an awesome human being, so I was not surprised to see so many people, of all ages and types, there to remember her. It was incredibly sad, and it brings home how fragile life really is. You really just never know.  

It has been a long, tiring day, and it's been really hard to keep things in perspective. I am hoping, as I always do, that tomorrow will be a good day.