November 20, 2009 by David Gillaspie
A pack of wolves. A herd of deer. Birds of a feather flocking together. They hang together just like people. People of a certain age, a certain economic level, a certain marital status. They stick together.
If you don’t find people together then you find them straying into transition; a young guy getting older, wealthier, and growing in his marriage turns into divorced aging hipster scrounging cigarette butts with others in the same shape. We manage to draw our own lines.
Hospitals have similar separation, from the Emergency Room to Intensive Care Unit; Operating Room to Recovery Room. After checking in, you might see every section in the place.
Diseases carry a special status. The Parkinson’s Study Group, the Cancer Ward, is similar to system rooms like the Urinary Ward, the Orthopedic Ward. The Mental Ward. It’s all in there.
Fortunately all of these specialized categories go missing in the Family Caregiving Ward.
Also known as home.
There’s no registration, no protocol. You and your loved know each other all too well. You might not know their Social Security Number, but you know where to find it. You’re that close.
The family caregiver doesn’t hand out menu requests. You already know what’s in the pantry. If you don’t have all the ingredients for a gourmet meal, you make do without panic. You are a family caregiver. You all eat together; eat the same thing. Just make a list for the grocery store.
There’s no need for hospital exam gowns either, unless its to keep one around as a prop. Breaking out the gown like its normal clothing is always good for a few laughs. If no laughs you’ve either worn the joke out, or your loved one has slipped a gear. Check the med times.
The home part of family caregiving is tricky for some. I’m not the first to walk into a nursing home or medical re-hab and feel like turning around immediately. I mention this as a caution. You may not think your home has the same effect on others, and it probably doesn’t, but sometimes a new visitor might see the family caregiving, and your loved ones condition, and fall apart. Some people react emotionally to the unexpected.
For example, a group of ladies gathered here to plan an event. Most had been to the house before. One first-timer arrived in high spirits, turned the corner and saw Kenny and burst into tears. She found the door to downstairs and headed for the steps to gather herself for a moment.
I glimpsed a certain horror in her face before she flung herself around, like she could make Parkinson’s go away if she squeezed her eyes as tight as she could. Ken was tuned into Perry Mason and didn’t notice but she gave me a shock.
The bigger shock was learning that her husband had recently been diagnosed with Parkinson’s. The woman saw Kenny and saw the future. Her husband will look like Ken down the line. It is all the more shocking because Parkinson’s isn’t often mentioned as a chronic wasting disease. What do you think of when you hear Parkinson’s? The shake, not the weight. Ken had been eighty pounds heavier before Parkinson’s.
The other women on that day knew Ken better and said hello, knowing he may or may not respond. He liked being noticed. He acknowledged each in courtly fashion, and silence. We talked about it later.
“Ken, you old rascal. You’re a babe magnet.”
He sat with his feet on a stool while I changed his ankle bandage.
“The one in the black sweater ran off when she first saw you.”
The dog started jumping onto the foot stool.
“Her husband has Parkinson’s, just found out.”
I bumped the dog away with my leg.
“You remember when you first found out? You went to the LA VA for a week?”
The ankle with the pressure sore was warm. I felt his other ankle. Same temp, no panic.
“She showed me picture of her old man. I showed her a picture of you before you got sick. She started crying again.”
I made a note to file down his toenails. The last one I clipped was so thick the whole thing shattered with shards bouncing off my face. Filing is better. Safer.
“You looked a lot like her husband. She sees you like this and she sees him. Let me tell you Kenny, you don’t look that bad. You’re not scary looking.”
He lifted his eyes the way he did when the ladies said hello.
“You’re not. You look better than John Wayne or Henry Fonda at their last Academy Awards. Lots better. I’m not just telling you that. If you want to see a picture then I’ll get one.”
He stared at me. I tape the bandage back on his ankle.
“So she cries and cries and I have to do something, right? What would you do? I put my arms out. I didn’t pull her in, she walked in there on her own. I held her, you know, politely, not too tight. And not too long, but she cried so hard all over this shirt.”
I lifted the shoulder she cried on. Kenny’s eyes track my hand.
“Good thing I’m wearing one of your shirts, huh Kenny? Something’s smeared on it over here. I’ll just put it back in your drawer, okay? Right in here. This is nice pull-over?”
I took the shirt off and moved a few things around the drawer to see if he’s paying attention.
His eyes don’t move off of me when he says,
“Not the drawer.”
“Tell me where.”
I picked his shirt up.
His eyes don’t move. I held the shirt over a laundry basket.
He gives me one nod.
“Good call, Kenny. You’ve still got it going.”
A small thing, a gesture, something that goes unnoticed in a regular long term care day, makes all the difference to the family caregiver. Any signal from a loved one showing they recognize what’s happening around them in a blessing. It tells you they still know its you.
Instead of moving to the next person in line on the list of a normal caregiver in a facility, the family caregiver uses slight communications to build their loved one a foundation for the next day, the next week. They use everything that happens between them.
And it’s enough.