mama_kestrel

I've been debating whether to say anything about what's going on in my life, but I could use some good thoughts for my mom.

She's developed bullous pemphigoid. (Do not google unless you have a strong stomach; the images are horrible.) It's an autoimmune disorder that generally appears in people over 80. (She's 86.) Basically what's happening is that her immune system is attacking the layer of cells that attach the epidermis to the dermis. That causes blisters. Lots and lots of blisters. Worse yet, she's on blood thinners - something about the 3 previous strokes. They can treat to prevent the strokes, or treat the skin condition with extended heavy duty steroids, but not both at once. And she itches. I put prescription cortisone cream all over her torso and arms twice daily, with antibiotic ointment on the open areas where the blisters have broken, and it barely makes a dent. So she's miserable.

That would be enough, but I'm also watching her get weaker by the day, and no one knows exactly why. She's barely eating, even when I make her favorite treats. She used to be able to stand for the few minutes treatment and wound care takes; now she can't, and I have to do it in stages. I was helping her get her pants on today; I pulled them up to her hips but couldn't get them all the way up. She almost fell over pulling them up the last 6 inches; I had to support her while she did it. She's probably sleeping 16 hours a day.

Her doctors are doing their best. We have a weekly video appointment with the family doc. She sees the dermatologist every 2 weeks, and they're wonderful about answering questions I ask between times. If she needs something in the morning, I generally have it by afternoon. I don't know how seriously they'd take her if she were trying to speak for herself, but they certainly take me seriously, and that's all I really need.

When this first turned up, I went and looked up everything I could get my hands on, including articles my physician daughter had to access for me. All of them said that the mortality rate for this was pretty high. I can see where there's a huge danger of sepsis, and I've been watching the open areas for infection like a hawk. But the numbers for sepsis and the overall mortality numbers don't add up. I'm starting to wonder if that isn't because even when there's no infection, already elderly patients simply get worn out. I suppose I'll get to find that out over the next while. So if anyone has energy to spare for Mom? I'd appreciate it. She needs more than I have to give.