Yesterday was a home health nurse visit. The first since Thursday’s failed cath urine catch attempt. I had never heard of someone being so swelled that a cath tube won’t go in. Definitely a first for me.
The visit didn’t go well. She was tachycardic in afib (pulse was 146) but BP was low 100/50. So top number is now also dropping. Aunt pitched a fit. Said hospital doctors told her that her heart was fine. Nurse said No they told you that you didn’t have damage which means no tears no scarring. She told her that the function of her heart is bad. Her ejection fraction was 42. She’d had a mild heart attack while she was there. Aunt argued & said she didn’t have any chest pain so she didn’t have a heart attack. Nurse explained heart attacks can happen without noticeable symptoms beyond testing. Nurse examined the tiny amount of urine in her pee pad & said it has a strong odor & is a dark yellow color indicating her kidneys aren’t working well. Guys, in order to get that little trickle it looked like she was trying to poop. In a nutshell, in a week’s time she’s gotten worse- which I knew but nurse confirmed. Her hands & feet are now dimpling when pressed, which means a lot of fluid retention despite lasix & flomax. And she’s taken it upon herself to add an extra 1/2 clonapin 3x a day (bringing her total dosage to 4.5 mg) because she swears her kidneys stop hurting & she can breathe better - all while she’s visibly gasping for a breath & has now started rattling from the excess mucus. The end result was the nurse calling to have an immediate home hospice eval. Which of course causes another tantrum by Aunt. She won’t just be thrown away, she says. She wants the fluid drained, she wants an implant she saw on a commercial or a transplant. She wants them to fix it. So nurse had to explain it can’t be fixed. She’s received all the treatment possible. There’s no cure for her conditions. All they can do now is make sure she’s comfortable & not suffering. She can’t have an implant; they’re not designed for what she wants it to do. She’s not a candidate for a transplant. They can’t drain the fluid because it’s in multiple pockets spread around her lungs & she can’t hold herself still on her side anyway. She said well they bent her over a table last time, to which I replied “last time you could stand & walk & that was in 2018 they did that” & it was in one location not scattered. The nurse believes that she will likely need some sort of sedation because the aggression & tantrums she throws are out of control. And because her delirium & cognitive functions are really bad. She informed us, for example, that she’d had a long talk with God & he told her she could stay forever & she’d be all better by today & could get out of bed. Do you know what’s going to happen when she wakes up & isn’t “all better”?! She’s gonna go bat poop crazy.
I'm just waiting, praying, & hoping. Hospice is supposed to be out tomorrow (Wednesday) for their eval. I really hope they don’t listen to what she tells them - or doesn’t tell them. I hope they listen to what I say & what I’ve seen. And I hope they get me help. I don’t need 24/7 assistance; I need help through the day. Getting her cleaned, helping when she moves her bowels, getting her bathed properly. It’s getting harder to roll her & harder to hold her & clean her at the same time. She has a hoyer lift but refuses to allow it to be used - she claims it hurts her leg (the same leg that she claims doesn’t ever hurt) & she doesn’t like feeling like she’s falling. I’m terrified that hospice is going to decline her & I’m stuck with no help as she gets worse.