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February 10th 2001
I've been thinking today about how many emails I've gotten that say..."Oh WOW! You lucky girl...a vacation!" Funny, isn't it, that in all of these years I've never once seen it that way? To everyone else, a trip down to Mexico is seen as a "treat". To me, it's always been seen as a necessity.
Yes, I love being in Mexico because it's rather like making time stand still. There are no dates...there is no time...you just "are". You're free to replenish your spirit. Free to wash away the weariness that batters the very soul of a caregiver. Free to choose whether to let go of any and all responsibilities...and just "be". And know what? That's something all of us needs...time to just "be".
Yes, I know I've said this before, but I'm saying it again...taking time off isn't a 'reward'....it's a necessity we have to do for ourselves. Yes, we want...strive, even, to be the very best caregiver we can. But know what? Every caregiver pays a very high price. No, we may not notice it at the start because we adjust to the "normalcy" of our loved ones reality. But the thing is, as the days go by and turn into months, and then months into years...what happens if we don't have some "down time"? We get sick...that's what.
In the years prior to mom going into the nursing home, I was the worlds most "focused" caregiver. I worried about everything. Was she eating enough? Was she doing "ok"...what could I be doing better...what could I do to make it easier? In essence, my whole world revolved around one simple thought...giving mom the very best life she could have. It didn't matter that I was so exhausted I was beyond knowing better. In fact, I would take great offense when someone would say to me, "why not take some time off, you look so tired". EXCUSE ME? One doesn't TAKE time off when a parent is sick. One must be responsible...one must 'be there' at all times or you're a very lousy, uncaring daughter. Sound familiar?
Now mind you, the last person I'm blaming in this is mom, because it wasn't her fault. It was MINE. I was the one who was so driven I lost sight of everything else. And that's what happens in this disease. We get tangled up in this web that takes and takes and never gives anything back. And yet we somehow fail to see that. By then we are so focused on being the "perfect" caregiver all we see is what we believe as truth....we haven't given enough...tried hard enough. So we keep digging. Giving more and more and more, until finally....
We collapse like a deflating balloon because there is nothing left to give. Not to ourselves, not to them, not to anyone.
And that's what happened to me. For at least 2 years I 'ran' on nothing more than sheer determination and nerves. If I found myself thinking..."God I wish I didn't have to deal with this" I'd eat myself up with guilt because a loving daughter doesn't think that way. So, I'd try harder. Giving when there was nothing left to give...never stopping to think what was happening, always believing somehow, there'd be something left over for me...but there wasn't.
You see, I had been tricked by the "master". Alzheimer's fooled me into believing that no one should be moms caregiver but me. No one understood her like I did. No one would give the same kind of care and devotion like I did...it had complete control. I didn't WANT to give anyone a chance because I was the only one who knew what was best for her. It was me and only me.
And that's EXACTLY what the disease wanted me to think. Here was a daughter being drained of everything, yet I couldn't see it. I didn't pay any attention to the lost weight, the exhaustion...it wasn't important. All I saw was "if I let my guard down" something will happen. If I'm not there protecting her, she'll get worse.
I can tell you honestly it took me months to repair the damage I had done to myself. Damage that was self inflicted because I foolishly thought, "being a great caregiver", meant you had to "be there" all the time. But it's not.
What I learned throughout it all is the one bit of wisdom I'm going to pass along to you.... A great caregiver KNOWS when it's time to pause and refill a draining cup. A wise caregiver knows that loving yourself and taking care of yourself, is just as important as loving and caring for the person who is ill.
Needing time to 'renew' doesn't make us bad or less loving, it's actually the exact opposite. Time away restores our confidence. It rebuilds our strength and give us peace of mind. It takes that landslide of doubt and exhaustion and gives us a chance at new beginning. We just have to be wise enough to see it!
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