So, it's been rough here the last couple of weeks. And as usual my response to things getting rough is to go into snail mode. I could stare at a wall for hours. Nothing has been getting done, So I copied some of the texts I sent to friends and family the past few days and will present them here in am embellished form. Not because I want to remember this past week but because I feel like I would be less authentic if I didn't put it out there.
Text one:
Listen I had the worst day. I just got home from leaving the husband in the emergency room. His doctor has been calling because Husband actually seemed to get worse after the antibiotics (He was being treated for pneumonia in his lower left lobe, the original x-rays were taken on April 28th, surely a result of aspiration as it set in almost immediately after his worst choking episode ever) and the doctor wanted me to take him to the emergency room and they did a chest x-ray and there’s something in both lungs now so they immediately gave him a bag of antibiotics but they’re thinking maybe it’s pneumonia maybe it’s heart failure maybe his kidneys are finally giving out and they’re keeping him there. They are gonna run more tests definitely a whatever the ultrasound of the heart is called (echocardiogram) and then an intern called me and asked me basically if husband’s heart stops if I want them to start it up again and I said "Well, yeah, like if you can start it back up in a minute start it back up but like don’t work on him for 20 minutes and bring him back so that he’s brain dead" which you’re not allowed to say because it’s really a yes or no a question and not a judgment call so I had to say NO and now I feel guilty even though I know that Husband from 10 years ago would completely agree and maybe even not want to be around in the current state he is. I don't even know how many times the pre-dementia husband told me that our culture had to learn to let go and that we keep people alive too long and that the financial hit to our system wasn't worth that last year of life. I wish Husband from today would say the same thing. I still feel guilty because I know that he’s a little afraid of dying.
Text two:
I’m in zero Mode. Just sitting here staring at the phone. Everything feels insurmountable
So they gave Husband a swallow test this morning. But it appears that he is swallowing fine the only thing that she could see that might be causing the choking is that he is uncoordinated in his chewing and swallowing which would be a neurological problem and I said “bingo he has neurological problems” and (I have noticed a general lack of coordination in other areas as well) so that’s why he keeps choking. It is because his tongue is doing something strange and she also noticed that he was putting more food into his mouth without swallowing causing the food that was already in his mouth to kind of back up towards his throat so I can just stand over him and yell SWALLOW before he lifts the next bite towards his face. This is going to be so fun. NOT.
Text three:
I’m in hospital right now. He is in annoyingly good spirits. Makes it seem like he isn’t dying. Kidneys aren’t functioning well. Still has fluid on the lungs. Seems to have developed high blood pressure and low blood sugar. It’s all very strange. Luckily I got to talk with the doctor and see the original cardiologist he had before he needed the heart failure specialist. They did an echo on him. His heart is pumping at 20-25%. Thats not enough.
They’re going to keep him another day or two to make sure he is stable. I suggested they keep him as long as possible since he is such a bag of conflicting diagnoses. I told the doctor I’m afraid to be responsible for him. This is way over my mother abilities. I can do stomach bugs, broken bones and even high fevers. But his stuff is beyond.
He is not in pain. Though tragically confused because he just can't wrap his head around being as sick as he is. Though I did talk to him about making peace with Marion (who told me she didn't feel the need to see him one more time-but I didn't mention that to him). I just want him to say the right words to her so at least she has that if he should die very soon.
Text four:
I don't think he is at hospice stage. Well, maybe he is technically but not psychologically. And he would never go peacefully to a hospice when he knows I'll wait on him hand and foot and give him what ever he wants here. The sad thing is that the only thing that would help him is a heart/kidney transplant but that wouldn't help all the other parts of him that are in trouble. Like his brain. Or the fact that he has no nerve activity anywhere in his body.