Emma, I am more than happy to share because that's what i was always hoping others would share. I handle it best by being
open and talking about
it with family, friends, and co-workers. They know all about
his situation, his prognosis, and I pretty much share anything they want to know (other than extremely personal). I told them that if people are going to gossip about
us, I at least expect them to get the gossip accurate. :) I'm big on education and I think this is not only good therapy for me but a way to educate the public as well about
how hard this disease is. It's not just about
the drunk in the street alley. It's about
smart, well educated, loving people that get addicted. I try to cry when I'm alone, usually in the wee hours of the morning as I watch him sleep. If I need to sob, I do that somewhere else away from everyone and get it out of my system. Then I'm good for a while. Everybody thinks I'm soooo strong! Little do they know! Anyway, crying and sharing are both very important for me. I believe in the positive side of life so I try to find the humour in everything I can. If he shakes too bad and can't feed himself, I do it for him and tell him that I've always wanted to make him eat my cooking, or something to that effect. :)It keeps him from stressingas well.... My kids are grown but my youngest still lives at home. She's 20 and just recently got her LPN license. She works 3-11 shift, so is there for a while when I leave for work. Right now, my mother in law comes over when she can. I'm lucky in that my employer is willing to let me work a 4 day work week and flex my hours. I come in at 5 or 6 in the morning and work until I don't have someone with him and then I leave. Of course now, I have applied for FMLA as well, but that's unpaid leave and like everyone else, we have to eat. If you are up front and honest with your employer, I've found that they are very willing to help. Hospice came for the first time last week. She is due to come again tomorrow. They basically talk with us both, check vitals on him, do a physical exam, and note changes good or bad. They said they could send an aid to bathe him but he declined. He still has his dignity and told them that I was the only one that would be giving him a bath! (For now at least). They asked me what kind of durable medical equipment I needed to help me, so I chose a walker, bedside commode (right now it's actually on the commode), and a shower chair. They are bringing him ensure tomorrow and want us to mix it with ice cream. She said as we need it we will add the hospital bed etc....I' m already having a hard time though getting him in and out of bed and I dont' want to hurt my back so I'm discussing that with her tomorrow. They sent a social worker out who visited with my MIL (I wasnt' there). They said they have a list of volunteers in our area when we feel we need it. They also had a list of aides we could hire, but that gets expensive too. All our friends have offered their help, but I am saving those favors for more toward the end when I really think I'm going to need it more. He has a great nurse and he and her hit it off immediately! That was a big relief for me. My biggest problem right now is sleep. He falls if I leave him alone, so I go to bed earlier than him while he is in his chair. Then I get up at 2 or 3am and put him to bed. Then he'll usually wake up an hour later and need to pee (we use the urinal) too hard to get him to the bathroom, and if I'm lucky I get about
3 hours sleep per night. I do try to catch up on the weekend so that helps. They are also sending a chaplin to visit with him. The hardest problem we have right now is getting him to talk about
his final wishes. We have brought it up on more than one occasion but he doesn't seem to want to discuss. I'm hoping the Chaplin can help us with this....
Anyway, I don't know if any of this is helpful to any of you or not, but I am more than happy to answer any questions you have about what we're going through right now. I take it one day at a time because there is no guaranteed tomorrow for him.