Our neighbor Allen, who lives directly across the street, is tall, well over six feet. He carries his height on a solid frame. I see him out jogging from time to time and working in the yard.
My husband Steven is average height, about 5’8”, and he weighs about 135 lbs. That in itself is a not problem. In fact, it is actually a good thing because Steven has multiple sclerosis and can no longer walk. Now and then, especially during transfers from toilet to wheelchair, Steven’s legs give out and he ends up on the cold tile floor, caught between the wall and the wheelchair in the confined space of our bathroom which was designed long before the ADA was ever dreamed of. It is in just those moments, after I’ve determined that Steven is in no immediate danger, and I have done my best to at least cushion the bony parts of his body, that I think of Allen.
Somehow, miraculously it seems to me, Allen is usually available when I need his help. Despite a busy travel schedule, he’s at home more often than not when I call.
I’ve come to think of Allen as my white knight who comes over at a moment’s notice and with a few deft strokes manages to pick Steven up and right him in his wheelchair. There’s no way that I can do it by myself. I’ve tried. At 5’1” and 109 lbs., I just don’t have the strength or the leverage. It’s such a comfort knowing that Allen lives across the street and is so willing to literally lend a hand. Everybody, or at least every caregiver, needs an Allen – someone to call on for immediate assistance in times of crisis.
I’m actually very lucky. If Allen isn’t home, or I’m concerned about having called too often, I know I can always turn to Tony who lives next door. Tony isn’t quite as tall as Allen, but he is younger and very strong, and most importantly, always so willing to help at a moment’s notice.
The other day when Steven had a fever of 102 degrees and was so weak he could barely move his fingers, it was Tony who I called at 6:30AM. He came over in an instant, helped me get Steven out of bed and into his wheelchair so we could drive to the emergency room. He also called that night when he got home from work to find out how things were going.
I recall one Sunday afternoon when Steven had slipped out of his wheelchair during a transfer and neither Allen nor Tony was at home. It seemed we were the only ones at home on that lovely sunny Sunday. Bereft of neighbors (or at least those I felt comfortable enough asking), I called the fire department. If people ask them to get cats out of trees, I surmised, they can surely help lift a man off of the floor. Sure enough, three members of the rescue squad showed up within fifteen minutes. “Any time ma’am” they said with a smile.
I’ve become very good at asking for help, in putting necessity first and pride last. I’ve learned that caregiving is more than a one-person job, and that you need to know when something is beyond your capabilities. I’ve learned how absolutely critical it is to make a conscious effort to put a network of support in place, to have people you can call on in an emergency. I’ve also learned it doesn’t just happen. It requires an effort and a breaking down of barriers. You have to let people into your life, to tell your story, to let them see your vulnerability as well as your strength.
We didn’t know that Allen lived across the street when we bought our house, or that Tony would move in next door a few years ago, but as Steven has become increasingly disabled, we have come to realize how critical it is to establish a core group of people that we can rely on. Every caregiver needs an Allen or a Tony. Every caregiver needs a few people to call on who can respond quickly in an emergency. Across the street or next-door is ideal, but even five or ten minutes away can work.
I’ve learned that many people do actually want to help. They need to be asked and then told what kind of help they can actually provide, and once they’ve provided it, they need to be heartily thanked.
We need to let other people into our lives, and perhaps that is the hardest part, to let them see the intimate difficulties with which we deal. But once we do, life isn’t quite so scary anymore, and we don’t feel so alone. For a caregiver, or at least for this one, that is very, very important. My wish for you is this – that you find the courage and the strength to reach out for help and find an Allen or a Tony to respond.