Filed under: Alzheimer's, Hospice, movies, Science, Science Fiction, Star Wars
When my MIL’s hospice nurse was here the week before last, she clearly saw a decline in my MIL, as I noted here. What I didn’t mention in that post was that one of the things she suggested we consider was to move to a transdermal patch to help alleviate some of the pain associated with the breathing difficulty my MIL is starting to develop. (When people start to develop pulmonary aspiration problems, the coughing and gagging can be quite painful and cause a great deal of distress for both the patient and care providers.) Pain relief and comfort are our primary concerns with my MIL, but choosing to go to a derm patch of a powerful drug could well contribute to hastening her death – a common concern about all opioid-class drugs with the elderly. My wife and I discussed the matter, agreed that it was an option we should consider if conditions worsened.
Well, when Lisa (the hospice nurse) came this week, it was clear that my MIL had continued to develop aspiration congestion in her lungs. And we’d seen several instances of very painful and frightening coughing fits, usually late in the day when she was tired. My MIL was exhibiting additional effort at breathing even when just sitting at rest. We talked it over again with Lisa, and decided to give the derm patch with the lowest dosage a try, in spite of the potential problems.
Lisa also recommended using an oxygen supplement for my MIL, to ease her breathing problems. We discussed it, and agreed to give it a try. Lisa left, saying she’d make the arrangements for getting the derm patches to us, and would have an oxygen set-up delivered to the home, both that afternoon (this was Friday).
The guy from the medical supply place called, then came over to deliver the oxygen machine. We got a back-up tank of compressed oxygen as well. He walked us through the operation of this machine, which concentrates O2 from the air and delivers it in a regulated flow at whatever volume you need. It’s about the size of a kitchen trash can and sounds just like the food cooker ‘Aunt Beru’ was using in the original Star Wars movie.
When my MIL got up from her afternoon nap, we got her settled in her chair in the front room, where she usually looks at magazine and whatnot. And we showed her the new oxy set-up, explained that it would help her breathe when she was sitting up. To say that she looked on it with a dubious eye would be understatement. I’ve mentioned before that Alzheimer’s patients don’t respond well to change, and as far as she was concerned, this new-fangled thing with the tubes coming up to her nose was just more than a little weird. But we convinced her to give it a try.
A short while later Lisa came by with the derm patches. We got one on my MIL, and discussed how we should change the mix of her other pain meds once the new drugs got into her system (a derm patch takes 12 -18 hours to saturate the system, then delivers a constant dosage for a period thereafter, in this case about 60 hours). Lisa also checked to make sure we had the oxy set-up correctly, just to be sure. Everything was fine.
So, results since then? The new pain meds have definitely helped my MIL. She has been sleeping better at night, and seems more free of pain. But she has also been inclined to just stay in bed more, particularly the last two mornings. The oxygen has also been a clear help, and she is working less hard to breathe when she is sitting in her chair.
The difficulty is that she pretty clearly doesn’t like the oxygen delivery system. The tubing coming up to a simple cannula is strange and distracting, and she wants to fuss with it or just take it off altogether. We told her that we wanted her to try it through this weekend, to see if she could get used to it, but that if she still didn’t like it, we wouldn’t force her to wear it.
Because while this would probably lengthen her life, if it is decreasing her ‘quality of life’, it isn’t worth it. It is the exact flip side of the ethical considerations of whether or not to use the transdermal patch, where quality of life is improved but there is a risk of shortening her life. And that’s not a neat and easy calculation to make. We know that she is entering the final weeks of life, but there are no clear mile-markers indicating just exactly where we are on this journey. We want her to enjoy as much life as she can, but that is a judgement call as to whether it is better to go for a longer period, or for more comfort.
And no matter what choices we make, we can never be entirely sure that they were the right ones.
(Cross posted to dKos.)
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