It's been months since I have posted anything - I read all the new posts every day & have kept up with all the ongoing struggles with this horrid disease. My heart goes out to all of those who have lost loved ones,& those who are watching their loved ones decline. When I read some of these posts, I realize how little support we have. Bob's illness is old news now- our little network has gone on to other things of interest. When people call, they ask how he is but really don't want to hear how he really is- so now we just say 'not too bad' & that's the end of it. They don't want details- they are calling because they think they should but are really only waiting to hear 'he died'. Sorry, but that's how I feel. Even our kids don't call as often or come around. I'll admit, we are in limbo, waiting for more tests, or test results- it's months between appointments & results & followup appointments. Meanwhile I see him declining. We went away for a weekend to a casino/hotel with my sisters & brother -in-law & everyone kept telling me how great he looked, then changed the subject. No one ever looks either one of us in the eye & asks "now, how is he really?" They don't want to know. I would love someone to ask so I could vent a little, tell them how we have to pack a separate suitcase with bedpads & diapers & garbage bags, tell them how I can't stand to look at him shuffling off to the bathroom wearing a diaper, how the sound of him tearing the tape on the diaper makes me cringe, how I can't stand being in the same bed so I end up on the couch.We are sick of cases of diapers, continence pads, bedpads, & laundry every day.The spread of the cancer is horrible- but the botched surgery is worse. This man is dying- we know that, but being incontinent is a nightmare. He is only 61.Bob will not talk about what is happening. I came in last week while his nurse was here,& caught the tail-end of their conversation. He told her how he was spitting up blood- news to me! He doesn't tell me anything- hasn't for years, long before this started, but that's a whole other issue isn't it? Do I sound bitter? Well, I am. I don't want to be a caregiver- I never wanted to be a nurse. We have been married 41 yrs. I've always worked & made the decisions etc. When I got sick about 10 yrs. ago, I begged Bob to take over things, pay the bills, make the decisions, do the things that I did & look after me.Well that lasted about a day & a half & we were back where we were. I am tired! I can't look after him & me too. We look after an apartment building. Now that he can't work, I must work harder than I ever have before in my whole life. Bob has no benefits, no pension, so I have taken on all kinds of extra work in other buildings for extra money. In a way I enjoy it because I get to escape watching him, but I am exhausted- I don't know how long I can keep it up. Wow, I didn't mean to go on so long. I just re-read this & almost deleted it, but I'm going to post it, maybe others are feeling a little of what I am??? Lorrie
