Stressed out, but not alone.
It’s hard to imagine. Three and a half years ago when my parents came to live with us they were both able bodied individuals. They could both get out of bed and go to the bathroom and take a shower and dress and feed themselves. Recently I found an old picture of my mom eating some chocolate cake and it reminded me of when she would raid the refrigerator at night leaving smeared icing on the counter, on the refrigerator door, and on the floor. I’m shocked that it was only three and a half years ago that she was able to do this. It feels like a lifetime ago. Now she still gets her beloved chocolate cake, but she simply yells out from her bed, “bring me cake, bring me cake, bring me cake” until someone brings it to her. She won’t get out of bed anymore unless
As a caregiver for a person with Alzheimer’s I try to maximize her quality of life, but I admit there are days when I feel the weight of the loop of the same questions and the same requests and the same tv shows day after day that make up her world.
There are some nights when I dread walking into her bedroom. Of course these are the nights when the caregivers aren’t scheduled, I’m exhausted or frustrated from a challenging day and my mother, of course, is in rare form. When I can hear her yelling one of her phrases over and over before I even open the back door, I want to turn around, jump into the car, drive to my favorite Italian restaurant , eat a pound of pesto, drink a bottle of Tempranillo and devour some tiramasu.
But I don’t. I take a breath and turn the knob because that’s what caregivers do.
Some nights I want to yell at her to just shut up after the umpteenth time of demanding the Golden Girls be turned on when they’re already playing, or telling me she’s hungry every five minutes and then spitting out what I bring her or yelling at my dad to turn off his lamp while he yells back “no”! I don’t want to change her diapers and brush her teeth and take her blood pressure and struggle with her to let me put her hospital bed back in a reclining position so she’ll go to sleep, or listen to her yell my name for half an hour after I’ve gone upstairs at 11 o’clock.
When I feel this way for a extended period of time I have the luxury of taking time for myself. I can escape for an evening, a weekend or even a week at a time because of the extraordinary caregivers that take excellent care of my parents, but what about the people that can’t ? The 24/7 caregivers that are trapped by love and compassion that often turns to self neglect, and resentment when they get no break for years on end. When there is no one to help physically or emotionally a caregiver can feel so isolated, exhausted and imprisoned causing depression and illness. I can not imagine being at the helm of this insidious disease alone, and it causes me heartache to hear of so many caregivers having no finances or community support to help buffer their tremendous responsibility. That is why I want to reach these caregivers and provide a sense of community and a much needed break to their 24/7 job. I want to reach in to all those who can not reach out, to create a mobile community providing support, care and tools to both the caregiver and person with Alzheimer’s. To give the caregiver some space to take in the needed gulps of fresh air and to offer friendship and human touch to the person with Alzheimer’s. That, is the art of connecting.
Comments