This has been one of those weeks. My labs showed more bad news. DH saw an orthopedic specialist who wants an MRI of the entire spine. DH has some numbness in his hands/arms and even more in his legs and feet, so we're not expecting good news there, either. Right now the worst problem is pain. Some days the pain just lays him out.
Yesterday DH saw the pulmonary/sleep specialist who said that even though the sleep apnea keeps getting worse, he has no idea what to do. He's going to adjust the pressure on the CPAP (DH's fourth machine so far this year) to see if that will help. Not too hopeful about that.
After the doctor we went to the new nursing home a couple of towns away and put DH's name on the waiting list. The place was the nicest one we've seen, but it still wasn't what you would call a happy event. Even while thinking that it looked pretty good, it was hard to silence the little voice that kept telling me that my husband was probably going to die in one of those little rooms.
When we got home from all of that wonderfulness, there was a huge box on the doorstep. It was our new raised toilet seat (labeled as such in letters that seemed at least three feet high!). No one had told us it was coming, or even that one had finally been ordered. It bothered me that there was also a folder with all of DH's personal information left with the seat. I guess they've never heard of identity theft. Since we live in an apartment complex, I'm a little jumpy about things left on the doorstep.
Last night I sat down to look through some magazines to escape. I saw a lovely dining table set for a dinner party. I thought--boy, I'd love to have dinner there. Then I thought about how long it had been since anyone had fixed any sort of meal for us. After going back ten years, I quit trying to figure it out. I felt like I had been punched in the stomach.
It's not just dinners where you get forgotten. It's when there's a family wedding and you're not invited, because you couldn't go, anyway--or because they know you can't afford a gift. Or when your name is dropped from Christmas card lists. Or when even the calls you used to get on your birthday are a thing of the past.
Some days I feel this deep, underlying sadness, even when that particular day isn't going that badly. Other days I feel enough rage to stun a buffalo. After rewinding some of this nightmare last night--like the proverbial life flashing before my eyes--I know why. This really is the disease that keeps on giving--and not in a good way.
And evidently all the people who have been so unhelpful during all this nightmare are the same ones who think when we finally lose our spouses, that we should "snap back" quickly because this is all over. Are they nuts?
Sorry for the rant. One more week like the last few months have been, and I'll be looking for a placement for myself.
Oh Jan...how I remember those days! I know it doesn't help much, but I am so sorry. I think the feelings of isolation and abandonment are maybe the worst of all. I just kept thinking....if our diagnosis had been cancer, people would have tripped all over themselves with meals and offers of help. I literally feel your pain!
JanK, sending lots of hope and courage. We love you and remember that you will get through this. Believe me the last 4 months for me was just chocked full of wonderfulness too I realized that I was much stronger than I initially thought and you will come out stronger too