Husband referred to hospice today. Freaking out.
Ok, so here is my situation, briefly: My husband (45) has been in the hospital (or hospital-like settings) since December for a multitude of conditions (liver failure, ascites, acute kidney failure, rhabdomyolysis, calciphylaxis). He was transferred to a skilled nursing home last week but today we were told they are sending him home and referring him to hospice care. Apparently our insurance company has only authorized 7 days of skilled nursing care because they don't believe he will get better.
Here is why I'm freaking out: I am 90% disabled myself, with MS, POTS, but most significantly with ME/CFS, which limits me to about 10 minutes out of bed per day. We have 4 children, 2 of whom have similar chronic illnesses to me. Another is entirely unhelpful to the point of menace (breaks the vacuum, mows over sprinkler heads, etc.), and the 4th is still pretty young. Neither of us have any family nearby, nor would they be helpful if they were. We don't really know very many people in the area.
Our house is a total mess. Not the way Pinterest moms say "don't mind the mess" before you step into their catalog home. But really. It's bad! It's not something a maid could fix either. We've been slowly working through the mess but its a mess that will take a year to clean. And even if we did hire a maid, my kids are slobs and there's just no way the house will be clean enough for anyone to come.
We only have one room we could possibly put my husband and it's filled with clutter. It's a small room anyway so that makes it worse.
We have two dogs who don't listen to me. If people leave the front door open even for 15 seconds, the dogs love to run out and then we have to chase them, which makes us sick. My husband was the alpha of the pack, and they will want to stay under his bed the whole time. I should add that my husband has extensive open wounds over 75% of his thighs and 60% of his calves and they have a very high risk of infection. I can't possibly imagine doing his dressing changes in a room filled with dog hair.
I get everything I need delivered, and besides visiting my husband, I only leave the house once a month for my doctor's appointment. My husband has dialysis 3 times a week. I've read you can't be on dialysis and hospice but his doctor never mentioned quitting dialysis. I honestly can't see why that would even be appropriate since he is responding so well to it.
The doctor and nurse kept assuring me that this would make my life so much easier, but I don't see how. I'm completely maxed out and at my limit now, so I can't even imagine having him home and having a bunch of strangers here providing care.
Anyway, I guess I'm not really looking for advice on insurance because we're already appealing the decision, but it doesn't seem likely to be approved. I guess I'm looking for advice on what to expect. And yes, I shared all my concerns with anyone who would listen.