Friday, March 18, 2011

My Life

Mike is still fighting off the pressure sores. He has one on his left shoulder, one on his left thigh and one on his right thigh - which makes it all the more difficult in positoning him at night. No matter which side he is on, he will be putting pressure on an already open sore. Lying him on his back would be an option right now, but we were JUST able to finally heal that sore. Everyday we do the best we can to make him comfortable and in as little pain as possible. I look at these sores and imagine what he's feeling. You know how you feel when you get a paper cut. We have been asking hospice for another piece of "egg crate" foam as additional cushioning, but after one month, we still have't received it. We had one, but it lost it's height and was really doing no good. Tomorrow I guess I will head to the fabric store to see what kind of foam they have there that I can use.
I have a little mystery in my life - after our story appeared in Newsday, we received some donations. Among them was a money order sent by "FC" - no return address, no name. They stopped for a while, but they started coming again. I am writing here with the hope that maybe it's someone who reads my blog. If so, THANK YOU!! This person doesn't send checks (they would have a name on it), they don't include a return address or even a signature...just FC. This person is a true angel, giving without fanfare and wanting no thanks.
We recently had another one of our Young Onset Support Dinners - which we haven't had in months. The gentlemen who pays for these dinners lost his wife to the disease and then the holidays came. It's sad meeting up with these spouses after a big space of time - most told stories of decline. And even though these are all "Young Onset" spouses, I am BY FAR still the youngest person at these dinners. I can connect with them on some level, but I still feel out of place at other levels.
I was contacted by another reporter for Newsday yesterday and we spoke for a quite some time last night. Last night I realized that each and every day, I get up and do what I have to do without even thinking about it half the time, but when I speak with others about my schedule and what my day entails, and where my life is now, it's depressing. I get through most days without REALLY thinking about what I do, but when I am confronted with the reality of it, I realize how other people can be shocked by it.


karen said...

I hate pressure sores. Our hospice gave mom an air mattress . It is like the ones you float on in the pool but has a motor and the air moves up and down it putting air in and taking air out all the time in differant spots. It is great. Call , yell and keep bugging Your hospice till they get you one. Moms pressure sores are gone now but she is losing so much weight that her bones are starting to poke out. And that makes the nurses worry about new pressure sores popping up. I hate it . I hate getting up to turn her and I hate having to change her . But I do love her. And I am thinking of you always.

karen said...

What I was trying to say is I know how you feel and you have so much love and you are taking such good care of him. I don't even try to explain what I have to do for mom anymore . Everyone just looks at me like I am stupid. Sorry I am talking to much.