Hospice Time

After 10 days Gerry finished the MRSA IV antibiotics last Monday. He was getting them at the office of the doctor for infectious diseases. It took about 1 1/2 hours each day and I got to sit out front and knit.  Gerry was so weak one day that he had me take him in to the office in a wheelchair. That was the day he he suggested that we sign with hospice (we tried twice before but each time he changed his mind). I called while he was getting treatment and the nurse came that afternoon with the necessary papers. The next day an LPN came to assess Gerry and talk to me, and the day after that his assigned RN, Susan, came. Each one of them was so nice. Gerry, on the other hand wasn't... he wasn't nasty, he was just angry and each time he really didn't want to see the nurse but in the end he let them come in and take his vitals. He saw them each for 5 minutes... the rest of the time they spent with me, talking and filling out paperwork. By the afternoon of the second day we had received refills on his medications, oxygen, a wedge and egg crate for the bed, and a shower chair (he doesn't need it yet but it's here for when he does). They are all about making Gerry comfortable, and helping me. As of Tuesday I had decided NOT to leave him unless there was someone to stay with him. Mom came over and I used that as an opportunity to run to Publix. 

Gerry does not sleep a whole lot. He dozes on and off during the day but it's nowhere near the amount of sleeping he had been doing. He is up most of the night too. That wasn't good for me as lately he had been making a lot of noise, leaving the bedroom TV on or putting the living room TV volume up high. Two nights ago he went into the living room and I was able to sleep.

This morning when I woke he complained of shortness of breath. He had started using the O2 the night before so I set him up with it again. He was concerned about his arms - they are SO thin, and then said that maybe he should go to the hospital, as he thought he was going to die. I told him that it wasn't happening today (he was just scared - I think he finally hit the acceptance stage). I called Hospice and the nurse said she would come around 11 AM. In the meantime the social worker AND doctor called asking if they could come to meet us. I of course said yes. The SW came first and Gerry was asleep but he woke and spoke with her - he was like a lamb. She was very honest and open with him and while he doesn't open up his feelings he did share a little of his fears. The doctor was so nice and Gerry seemed to like him, too.  Nurse Susan came and was here for a few hours. She will return 2x week.

I have been pretty good up until now. But each day it gets harder emotionally to see Gerry going downhill. He is very thin (he lost over 10 lbs in the last week, and that was as of Tuesday. He eats next to nothing all day long. He hasn't been up to small talk in a long time. He can't bend down easily as his abdomen is large with tumors, so I have to help with dressing (which pretty much consists of boxers and sometimes a t-shirt). He can still shower, toilet and brush his teeth himself. He lays on the couch for awhile, then decides to go into bed. So I have to move the pillows, fan (he is always hot and/or perspiring), water, and now O2. After an hour he wants to go back on the couch.... time to move it all again. Sometimes I will help him out, go to the other room to begin doing something and I hear, "Honey - can you ____?"  I am not blaming him as I know he can't get comfortable AND needs a change of venue, but it sometimes is exasperating. Then I stop and think, "How selfish... he can't do things and for what I might want to be doing, it can wait. I will be alive to do whatever... and he won't!"

Another sign that he is seeing his fragility and mortality - he authorized me to give up our dogs. We have 4 - a dachshund and 3 maltese. Gerry loves these dogs as much or more than he loves me (it's ok, I love them, too). We really were nuts to take on 4 but now it's too much to deal with. They are wonderful dogs but, being small, they are barkers and bark at every one/thing that moves outside. If Gerry is lucky enough to fall asleep during the day it wakes him up, or just grates on his nerves (which are very thin). He has been yelling at them when they disturb him. He used to love for them to sit on his lap but he is so sick he can't take it and so there is no affection/attention to be given. I am worried, too, that if Gerry gets up and the dogs follow him, that he might trip over them and break something. Once I am on my own I would have had to give them up because I will not be able to afford their care AND I work 26 miles from home and will be gone for 10 or more hours each day. That surely isn't fair to them ( I can't even go two hours without peeing). I called Alison and she is going to help by contacting a maltese rescue organization. I am looking into one for my dachshund, too, with my good friend Melinda helping on that side. I know I will get through this but gee...doesn't life just SUCK sometimes??