Holiday Blues, HELP!
Well another holiday down the tubes.....I made all the plans and preparations for the two of us and it never works out.
It seems like the same time each day (like a switch goes off) my husband starts his "routine". Lately it has been at the dinner table. He gets fidgety and starts moving things; it's very annoying. I jump up and try to clear the table real quick but it usually gets us both in a tizzy. He is on Lexapro and he was taking it at 9 PM, I upped it to 5 PM, but after the Christmas Eve mess I started giving it to him at 1 PM. Also he sleeps as soon as his butt hits the chair. If he is out he is fine, friendly and talkative. If I make him go to bed at 6, 5 or whenever, he will sleep through the night and usually gets up between 5 and 7 AM. His pulmonary doctor thought we may want to add Requip at night and we have an appointment with the neurologist next week. Can anyone give me any idea what I am dealing with, is it the medications or is it more LBD?
He has started day care two days a week and thinks he is going to "work" and there has been no problem getting him on the bus, he is very social. I can't entertain him all day long and even if I tried, he does not take it from me. He has no trouble with the aide with word games, exercising, etc.... H E L P!
I am writing this on Christmas evening; he is watching TV and is on the verge of falling asleep. Today, we went to Church and he was wonderful in Church with me, but before and after, a complete lunatic. HELP....HELP!
Holiday Blues, a reply.... I'm sorry you are having such a stressful time. I hope what I say does not sound self-righteous; it isn't meant that way. I think of myself as one of the caregivers with one of the worst attitudes, which I try with varying degrees of success, to hide from my husband. Caregiving is a '4-letter word' to me!
First off, you need to know more about LBD. Go on the website and read some of the link pages. Hopefully, it will make you feel a little more in control. Although of course, you have no control whatsoever. Don't just rely on us to answer your questions, because, let's face it, we are all at different stages and certainly have different opinions.
Second, try not to feel guilty for hating this job. Nobody wants to be a caregiver and give up their own life; their own identity. The more you face your own attitude, the better you will be at handling it. And we ALL lose it at times anyway.
It's not betrayal when your spouse acts better with aides or friends. He won't be able to do that much longer....why not just take pride that he can still have some pride of his own, and overcome his horrible disability for a few hours? So people don't get it? Who cares? For me, being a caregiver is all about not giving a damn about what others think. Believe me, the aides have seen it all and can see thru that. Why not send him to daycare more days, since he likes it. It sounds like you need more of a break. When my husband starts to act the least belligerent with me, I give him 25mg extra of Seroquel (I DID discuss this with the doctor). It's not for him, although I suppose its better that he be stable; it's for ME. To handle him and not get upset that he is being nasty to me.
Which brings me to you taking care of you. As a person with a very bad attitude, I say, 'Stress and Annoyance are a state of mind'. You don't have to be Mother Theresa, but seething can eat you up. It's a fine line between accepting the fact that you need to cry, rant, be furious, want to kill the person, want the person to be dead, want your own life....etc. 'AND' knowing when to shut if off, not for the sake of your spouse, but for your own sake.
Here's my opinion, and I'm sure many will not agree: YOU HAVE GOT TO SAVE YOURSELF FIRST. And last, if it comes to that. There is nothing to be gained from eating yourself up. As I have mentioned before, Caregivers suffer a very high percentage of heart attacks and strokes. Caregiving is not its own reward.
I haven't really answered any of your questions, but I tried to address what I thought might be part of it all, you hate the job, and at times, you hate your husband. Each person has a point at which they can't take it anymore. For me, it's when my husband has a bad attitude.
You need to identify what is the worst thing for you and really push his doctor to address it. Sometimes they don't see it as important. But, it's important to you and even if you sacrifice some of your husband's health in other ways, you must have it.
LBD is not a disease that only your husband has; you both have it and you, the healthier part, have got to preserve yourself. YES, YES, "to help him better", should be what I say next. But I personally want to survive this period of my life and move on.