Another visit to Yale for a followup yesterday. Over an hour drive each way. I wanted to try to go to work afterwards as I've missed so much, but by the time we were done and ready to get on the highway, it didn't make sense to put in a few hours of work. We had our 7 year old with us and he needed to eat and DH needed to eat and me too, so we stopped for lunch. Anyways, I'm starting to seriously wonder if DH is getting placebo. He seems to keep deteriorating. He's only had two injections so far, but I didn't think he'd continue to deteriorate like this. If he's getting placebo, I'm not going to keep going with this. I know it's in the interest of research, but I just can't do it. I felt so discouraged yesterday, talking to the research assistant about his weight. He's gained some back, but he's 6'2'' and down in the 140's. Not that many years ago, he was in the 190's. I just can't believe how he's deteriorated. The research assistant is so sweet and "perky"and positive. She said I should make sure I have support. I wanted to slap her, isn't that awful? I wanted to say "You have your whole life ahead of you", babies and healthy husband and everything. What do you really know about what this is like?? We were in a sandwich shop on the weekend, DH and all 3 kids and me. DH was with the kids while I ordered. The young "punk" behind the counter asks me if he's ok. The "older guy" he calls him, says he's a regular and he seemed confused the last time he was in. I wanted to yell at him, that he's my husband and he's fine. I didn't think it was any of his business. I just said, yes, he's fine. I'm sure he meant well, but I wanted to cry all afternoon after that. I kept thinking that he just voiced what a lot of people must think when we're out in public. I know I shouldn' care about that, but I do.
I've been bitter and angry lately. I don't know which is worse, depression or anger. At times I really hate my life. But I know there are people much worse off.
Thanks for reading my rant. I needed to get it out!
You know what drives me nuts ... everyone telling me I need to take care of myself. Well, thanks a bunch. If you would just please tell me HOW? How do I find the time to do all the things I have to do, and then find the time to pamper me? My reaction, every blessed time, is that they are putting yet another burden on me. If I get too stressed, it's because I didn't do what I was supposed to do, so I'm failing yet again. It's just something they're told to say, so they say it.
So with this clinical trial that your DH is on ... is there a second part of it in which, even if he was in the placebo in the first part, he'll get the "real deal" in the second part? The trial my DH is in was set up that way. And that would be a real incentive to keep going, even when you're feeling discouraged.
The punk may actually be trying to be helpful. It sounds as if your DH is a regular and maybe even goes there without you? The punk may be asking for information so he'll know what to do the next time. Taking good care of his customers IS his business. And it's certainly a better reaction to ask you if he's okay, than to be snotty with your DH when he's having problems.
Maybe he's actually more sensitive than others who see you out in public... maybe they don't really notice at all. I've been amazed that people who see my DH on a daily basis STILL don't have a clue he has a problem.
Not, understand, that I expect you to be rational about any of this. I'm sorry you're feeling bitter and angry, and like crying, these days. Been doing a bit of that myself lately. I sure wish the clinical trial was helping your DH more. Maybe it takes time for the drug to build up, and for the patient to respond?
(The only thing that bugs me more than "perky" is smug.)
You know what I say?! Just tell those people who ask No, he's not OK, he has AD. Then watch them squirm. People are so funny. They expect you to fall to pieces everytime you say the word AD. I'm past that point. There is no shame in having this disease. It's not something someone gets because they've done something to deserve it (frankly, I don't know of any disease like that).
I think people look at younger people with AD and wonder - Is he on drugs? Is he mentally ill? etc.... So I just tell people if they ask. I'm not going to hide it. To heck with them if they shy away from it.....
Kelly, I agree with Leighanne that you should let people know what is going on, particularly as in this situation they ask. If you feel uncomfortable telling them, get a card made up. You can get them from Alzheimer Association, or make them up yourself on your computer. I made one that says "My wife has Alzheimer's Disease, Please be patient. Thanks"
I was thinking that as I read Kelly's post also. That I'd just say (quietly probably,) "Oh, yeah, he has Alzheimer's." Then I'd continue so as not to leave any pause for reaction. But I do understand the emotional fed-upness that sometimes makes us feel alone in, and alienated from the world that Kelly was expressing. We all feel that sometimes.
Thanks for all your feedback. I know the guy in the sandwich shop meant no harm. It just kind of hit me hard because it was the first time anyone had seemed to really notice that something was wrong, like entering a new, unwelcome stage, you know? But I realize it is probably better to be forthright about it and not try to cover it up. It's just so "out there". Sometimes, I want to pretend it's not there, but that's getting harder and harder.
Sunshyne: I'm not sure if DH would get the drug at the end of the trial if he's getting placebo now. I thought someone had mentioned that when they first invited us to participate, but when I brought it up during one of the meetings, it didn't sound like that's the case. I'll have to ask the study director for a definitive answer on that. It might make it more worthwhile to continue, although the study is supposed to last 1 1/2 to 2 years, and it seems doubtful it would help DH by then at the rate he's progressing.
Anyways, I need to try to stay positive, I know. It's just that some days (ok, a lot of days), it's so damn hard, as we all know.