This caregiving thing can be a slog. You spend so much of your life behind the closed front door, doing the day-to-day sheet and urinal changing, drug managing and aide scheduling, that you can lose track of the fact that there is a universe – or, at least, small galaxy – of folks who recognize the struggle, have been there and want to help. Every once in a while, though, you catch a glimmer of grace in an unexpected act of kindness that can make a world of difference, if even for just a short time. I had two of those moments this weekend, and to all those in that galaxy who may be reading, I say “thank you.” In a very frustrating weekend, you brought humanity into our lives.
Yesterday was a little fraught. Thanks to the Columbus Day weekend – I still don’t understand how this has become a national holiday – the visiting nurse aide schedule was thrown completely up in the air, a fact the agency didn’t think they needed to inform me about until early Thursday afternoon. All three of the aides who usually help Dad with his twice-a-week showers were going to be on vacation. Do retail establishments allow this to happen? We are on private-pay for this service, so I find it especially aggravating when our lives are thrown into limbo at 2 days’ notice. At first, there wasn’t going to be anyone available for Saturday’s shower, which would mean Dad would go without a shower for a full week. I managed to harangue them into sending someone over at 2:30 on Saturday – instead of the usual 9:45 or 10:15 appointment, and it was to be someone Dad had never met.
Initially, Dad went with the flow. But on the way back from a dinner out Friday night, he had the fit I’d been anticipating for at least 24 hours. The neighborhood’s annual block party was to be from 1 to 3:30 or so on Saturday afternoon. Obviously, a 2:30 shower appointment would put a damper on the festivities for Dad. Plus, he’d have to get undressed in front of yet another complete stranger in the middle of the day. Why did he need these people in the first place? Why couldn’t I just help him, instead?
Maybe this is a question you’re asking. Why, indeed, couldn’t I just help him, instead?
When I first decided 2-1/2 years ago that I would take Dad into my home, I told my sisters that I would be drawing the line at anything that had to do with personal care. In the last year, that line has been crossed multiple times. I’ve spent one 10-hour period in the ER trying to pin down his kicking legs and keep a urinal in place as he became convinced that the overhead fluorescent fixture was actually a skylight and that days – rather than hours – had passed as we waited for a hospital bed. And I’ve cleaned up numerous bodily excretions from bedclothes and flooring in situations in which bodily-function control went the way of dial telephones and cheap gasoline. But I’ve still resisted helping with showers. For one thing, I just don’t want to do it – I just don’t want to be dealing with my father that helpless and naked. For another, helping him back on his feet in any kind of fall situation requires at least 2 people. As much as he argues that none of his falls has involved getting in and out of the tub, I argue back that a) having the aide there might be part of why he’s more careful; and b) it only takes once.
All to say that we both went into Saturday morning without a terribly sincere “sleep well” to each other Friday night.
I went on to work at the big annual church bazaar Saturday morning, my head still steaming at Dad for the argument we’d had Friday night. (“Well, then, I just won’t have a shower next time, and I’ll stink for a week.” “O.k., well, that’s your decision. You’re just not getting into that bathtub without some help while you’re living here, and it’s going to be an aide helping you, not me.” … is this how you want to go into one of the fall’s possibly last really pretty weekends?) I left my shift a half-hour early, so I’d be back 15 minutes before the aide was to arrive – I didn’t want Dad to have to deal with the complete-stranger issue, without me being there.
I got home to find… no father. I was livid, thinking he’d skipped out on the appointment and was down at the block party, instead. I called his mobile. Turns out, the aide had showed up 2 hours early, unannounced. Dad had been a good sport and gone along with the change in plans, and then driven his freshly washed self over to the party. I walked over to join him and found him to be a center of much good will.
Here’s the thing: 99.95% of the people for whom my father isn’t family – which is to say, all but, say 10-20 people in the universe – think he’s the most charming man on the planet. Walking into the block party, with everyone in the neighborhood telling me how wonderfully engaging and with-it my father seemed to be, initially made me want to explode like one of those amazing Chrysanthemum fireworks you see going off over the Charles River every Fourth of July. Where were they in the middle of the doctors’ appointments and shower-aide arguments? But then I saw him sitting in his chair of honor, beaming, and my explosiveness dissipated into gratefulness. This group of people who didn’t know who I was 4-1/2 years ago had accepted, first, me, and then my father into their community. And, in an odd reversal of that parent-child, cause-effect relationship, they were seeing his charm as a reflection of my care.
Then tonight, completely out of the blue, my wonderful across-the-street neighbors called to say they happened to have a spare dozen oysters, would Dad like them? (And, yes, I do realize how amazing it is to live in a place where someone might actually have a spare dozen oysters.) They had taken advantage of their town shell-fishing license to pull a bucket of those briny delights out of the bay just that morning. Now, to Dad, fresh oysters are like a 12-year-old Scotch and a medium-rare London broil all wrapped up in a single, shelled, suckable delicacy, and you don’t get any fresher than these. “Um, we don’t really have anything to shuck them,” I said hesitantly. “We’ll bring our knife over and shuck ‘em for him,” they replied.
And so, an impromptu cocktail party ensued. I mixed up a batch of gimlets, and for 45 minutes Kenny shucked Dad’s oysters and Cherie and I chatted. Dad & Kenny talked baseball playoffs and football forecasts and Cherie and I talked about aging pets and my church’s restoration efforts. The time passed quickly, and the neighbors were soon gone, but Dad and I were happy with each other, again. It’s likely short-lived, because the two of us seem to be getting on each other’s nerves so much lately. But we gained a few hours of grace with each other, and, at this stage, when time seems more like a dearly hoarded currency and less like a commodity, those hours have been a blessing, indeed.












October 11, 2010 at 9:38 am10
I can sure relate to this post. We have two assistants with Chrissy for three hours each afternoon. They alternate days, one is with an agency and the other is someone we’ve known for quite a few years. This is the second time we’ve used an agency and their regulations, procedures, and such always tend to create extra stress.
And yes, I agree about Columbas Day holiday!
I once said I’d draw the line at bandages, blood, and stuff. Didn’t work, I still have to clean and bandage whenever her thin skin tears and then fret about mersa popping its ugly head.
Once Chrissy banged her arm on a safety bar while taking a bath – so blood everywhere. Seeing this she kinda froze in the tub. I couldn’t get her knees up or her turned over or her hands on any of the three saftey bars. We ended up wrapping her arm in a towell,letting out the water, putting a blanket over her, and a pillow under her head. Once she relaxed she was able to get out of the tub.
Recently we took her on a three hour trip this past weekend to see my sister as most other family members would be there. After about two hours she was ready to head home – but during those two hours she was a sweetheart, so personable,smiled and talked with everyone. These are family that seldom see her, though most call weekly or so. Anyway, I would truly bet money that they now believe I have been exaggerating her mental state – mid to late stage. I am thankful I saw her pleasure as she interact with her children and others. Sadly,I certainly doubt they see her charm as a reflection of my care. I gotta say though, I am most fortunate to have her next door. As her caregiver can be limiting and all-consuming, most days she is a delight!
October 11, 2010 at 9:38 am10
What a beautiful, beautiful post. Yes, kindness — unconditional kindness. It is lovely and surprising how many people actually live with this as their ethic. Thanks.
October 12, 2010 at 9:38 am10
Thank you for continuing to write about your time with your father. For me, with my dad, those glimmers of grace give me hope. As I have changed my perspective of the whole situation and all the little nuances, as Pollyanna as it might sound, if I try to find the good I feel free to enjoy those glimmers more deeply.
October 16, 2010 at 9:38 am10
Thanks again, Chuck, for your remarkable insight into the caregiver journey. As I’ve said before, you are a wonderful and heroic caregiver as are your readers as far as I can tell.
Carol
Inside Aging Parent Care
October 28, 2010 at 9:38 am10
Oh, to honor those moments. You are helping so many, I am sure, to do the same navigating of elder parent care without a map. I am thrilled and grateful that my and my honey’s mom can be here to share our kids and have dinners together. Those times of frustration are seldom witnessed by those “outside” our more intimate moments, and I prefer the moms to both have that dignity and respect. I get the same regard from those “outside”, too, for which I am also grateful.
Peace,
Holly