Thinking of you as I read your last post. So sorry about
the constant paracentesis. What misery for him. Glad (maybe) they can do a catheter. My hubby hated hated hated the one paracentesis he had and we decided not to do the cath and have been able to control the fluid with meds,,,,so far.
I get what you mean when you say you try to cook stuff he wants or stuff food down his throat...this is one issue we are now having with the nursing home...They harp on him to eat and it is making him crazy. As you may have read, my hubby has choosen not to get evaluated for a transplant, so I am kinda in your shoes. I work to be happy when I am wih him and told the nursing home to quit bothering him about
eating (I don't think they are allowed to let him not eat though.) I also am trying to be happy when he does want to eat . I like what you said about
being sad later....somedays I don't know how to put the sadness off though.
Last night he called from the nursing home at 9:00PM and said the nurse wouldn't give him pain pills or a sandwich...so..working on the being happy part..I packed a picnic lunch, my clothes for work the next morning, the dog, dog bed and headed to the B & B (nursing home) to stay the night. Sure enough when I got there and asked about
his pain pills, the nurse did mention that she didn't give him any and he had asked at 6:00 (it is as needed tramadol) and about
the snack she said, well he didn't come out of his room for dinner at 6:00, so he wasn't going to get a sandwich (then she said, "just like my kids..no dinner..no snack.)
Darn I was mad as he is not some little kid, but a man that deserves some respect for a life well lived...but ... trying to be upbeat...I asked her to give him the tramadol and unpacked our picnic in his room, put on my jammies and we ate health cereal yogert, flaxseed, coconut flakes, bananas...the stuff he was used to at home. I reassured him that he was right, she wasn't going to give him his meds or sandwich and to just call me when he has a problem. (Aside: Sometimes he can figure out how to call me and sometimes not...there does not seem to be a rhyme or reason to it. (Last month I made arrangements for the kitchen to make him a sandwich for night...so she didn't have to make one,,just get one out with his name on it.)
We did have a nice night watching animal planet..although he was up about 12 times..trying to BM...Dog was really happy in the airconditioning with the fan blowing on him all night. (The only only way I was able to be civil to this nurse, was that I had had a 5 hour nap in the afternoon, so was able to blow it off and take care of him like he deserves. I know that she has her own personal problems.) Some days I really question whether I have done the best for him by taking him to the B&B. Guilt guilt guilt. Well,,,enough of this.
(On the positive side,,I am working with the activities director to help arrange a fishing trip for B& B residents soon. Should be challenging but fun. I am trying to get them to get the residents plant a garden and will help get it started.)
Isn't it Ironic that they want him to eat, but when he asks for sandwich,,,that is made and ready for him...no he can't have it. Better quite writing, I am losing my "Happy".
From your Mariel52 and my Angie1953...I would guess we are the same age..about 58. How old is your hubby and how long have you been together? Thinking of you today especially because you sound so upbeat...I know how hard that is to keep up sometimes.
Post Edited (Angie1953) : 6/8/2012 1:59:28 PM (GMT-6)