Our little gargoyle

My last post recapped Dad’s rough first month in Assisted Living. All kinds of ups, downs and sideways lurches since then leave me reporting… about the same. And I’m whiny and exhausted myself. My sister and brother are back in Alaska for a break, and I’m sticking around because, as frankly as I can make it without being maudlin, Dad’s status is as stubborn as it is precarious.

One big reason we’re still here is that Assisted Living is much lighter-touch than you’d think from the name. And he’s blind, which they’re ill prepared to deal with. They’d just leave him in his room alone all day and all night unless he rang the buzzer for help. How could we leave him to that?

As everywhere else, there is a staffing shortage. Maybe they would be more Assistive if they weren’t staffed at approximately 1 staffer to 20 residents. (No, I’m not kidding.) And when applicants see the job they’re being asked to do here, at what is surely a dismal hourly rate, I bet most of ’em run screaming in the other direction. The ones who stay are mostly hearty souls with buckets of compassion and strong shoulders. They’re the ones I try to emulate. (It rarely works, but I keep trying.)

Calling my father a gargoyle doesn’t seem very nice

Maybe this is my way of separating the man I know as Dad from the troubled, suffering person I see every day. At times I find him unrecognizable. Dad has long been known as Gentleman Gene among his buddies and clients. He doesn’t complain or curse or raise his voice (except to rail at Trump!) But this new fellow has a grumpy demeanor, barking one-word orders, wrinkling his brow with displeasure, reaching and gripping wtih his cricked-up hands. I don’t recognize the way his bulging blind eyes circle the room, waves of unshared emotions crashing over his face. He has become, for me, Gargoyle Dad.

Moments

From the corner of my eye I see the familiar angle of his chin, but when I turn to see him it’s covered in whiskers – something he would never have permitted. When he is agitated, like today, his well-loved voice says crazy stuff about driving to Kansas City today, or wanting to know immediately who is running in the Kentucky Derby. His cricked-up hands, his hunched back and his craggy face are the spitting image of his mom’s from thirty years ago. Maybe I will look like him, bend like him, and grip like him sometime down the road.

In the meantime there are moments. The last ten days or so, we had many: he was very cogent and alert and fun. Gentleman Gene was holding court. Here he is with step-great-grandson Jack, who has chosen Dad as his buddy.

This is a picture of Dad’s “Wow meal” – each year, each resident gets to pick a meal, which is served to him or her on a silver platter. Inexplicably, Dad picked roasted turkey, dressing with gravy, and butter beans. (Butter beans???)

Dad has also requested pickled herring (!), popcorn, green jello. He eats two or sometimes three desserts with dinner, and hasn’t touched a lettuce leaf except when we’ve disguised them. He also asked us for “peanuts with salt”. For the last forty years, his diet has been practically monastic. His partner made it her personal mission to pare his salt intake down to zero. But he’s having none of that abstemiousness now.

Then there was the time my sister and I got all excited to get to drive to a medical supply store outside of the Dad’s neighborhood. It was maybe thirty minutes away. It felt like flying to Kuala Lumpur. I’m squinting in the photo like I’ve been in a cave for a month, which at the moment, felt pretty true…

Then, my brother celebrated his birthday here, and Dad’s hospice music therapists happened to be here that day. I don’t know if it’s heartening or ghoulish to the nth degree, but here’s the video:

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Getting help

When Kyna had to go home, we started looking into hiring another set of hands to help us. We have been with Dad 24/7 since the end of January and it’s taking a toll, of course. My brother has taken an inordinate share of the grueling night shifts, sleeping in Dad’s la-z-boy by his bedside. But even the two nights a week I did it were AWFUL. I felt like that damn chair was going to snap back up – who can sleep like that? And Dad’s needs in the night were unpredictable, hard to deal with, and embarrassing for Dad. Blindness sucks. And being blind and elderly is a massive double whammy.

If you haven’t had spinach today, eat some at your next meal – you want to protect your eyes starting RIGHT NOW.

Anyway, the point of that last paragraph was that we have hired a nighttime sitter. They come and stay from 7 pm to 7 am. They’re great, compassionate, strong, and sweet. They are also the most expensive thing I’ve ever bought in my life. It’s like buying a nice used car every month. I’m putting it on my credit card for the points – then paying myself out of Dad’s checkbook. Hey, I’m grieving, but I haven’t forgotten what money’s worth, not to mention the value of frequent flyer miles. Dad never made more than $36,000 a year – but by careful saving and investing, he has enough to get the care he needs.

Frankly, it takes a village to care for him. We have no shortage of help in many ways. The care home staff – the ones who stay – are amazing. They surrounded me like a protective bubble today when Dad hallucinated and said we were all trying to curtail his freedom. They even keep my well-meaning stepmom at bay, when her “opinions” are like a cattle prod she’s chasing us with. (She can’t help it – she is 97 herself.)

The place Dad is staying is small – around 40 residents. It’s very much a “family” and we all kind of know and look out for each other – staff, residents, everyone. We’ve come to care about most of the residents (excepting only the few who are bedbound, who we haven’t met) – we’ve helped them find their rooms, refilled their coffee cups, tied shoelaces, answered oddball questions, and fallen for many of them. We’ve loaded seniors into the van for a day trip, identified and satisfied food whims, and set up plastic bowling pins in the hallway for them to knock down. If it’s not too self-serving to say, I think they’re as charmed with us as we are with them. It’s not like three adult children normally descend upon and actually live with their father in his room – we are quite an anomaly.

Then there’s hospice. Hospice isn’t exactly hospice anymore, apparently. People can be on it for months and months, not just the very end of life. Because Medicare is so byzantine, these companies have popped up to get people on hospice – keep them comfortable, even if they’re not on the cusp of death. They do provide a nurse who’s always available for Dad, social worker, a chaplain, a music therapist who comes by to sing his favorite songs to him, special equipment like a hospital bed and a wheelchair, someone to come in and bathe Dad… in short, lots. Of course, they’re getting paid for it, so a hearty thank you to all American taxpayers who pony up for Medicare.

On my own for a bit

All that said, at the moment I am here with Dad, on my own. My sister is a primary care provider – the chief one – at an Urgent Care in Alaska. She went back a couple weeks ago because without her, they are seriously short-staffed. On Saturday, Kyle went back to his homestead in Alaska for a well-earned break, and to clear the snow off the roof of his cabin. (I myself had a short week in DC last month as a break. We are looking out for each other.)

I’m counting the days till one of them comes back, especially because Dad has had two very bad days. But also it’s okay. So what if I have to get up at 6:00 a.m. for a twelve-hour shift? So what if Dad’s needs are great and changing and sometimes impossible to satisfy? We’re on a journey with a lot of dark territory ahead, and it’s good for me to be brave.

The piñata

The piñata is kind of silly. It’s a gift I gave him more than twenty years ago on some birthday or another. Maybe the 70th. Anyway, I filled it with little rolled up paper scrolls with memories written on them – like “Remember that time we were at Busch Stadium and you convinced me it was okay to throw the peanut shells on the ground?” or whatever. Dad hung it in his home office, never having broken it open. He would reach into the hole in the back of the bear, swirl around the little scrolls, and pull out a memory or two, read them, roll them up and put them back in. Over the decades he also started stuffing things in there that he liked having but didn’t have any place for – like his season ski passes, cards from par-3 golf courses where he beat me, the instructions for a little precision sander I gave him for some other birthday. Honestly it was also sort of a junk drawer for other little bits and bobs.

It has given us a bit of joy and color in his room. Blind people really don’t care about decor, as you might imagine, and rooms in nursing homes are not known for their flair. But the piñata gives us some.