By Lissy Melia
Dad fell asleep at a red light, rolled right across the intersection and into a parked car. That was the sign it was time to move him to an independent living community. I was 22 years old. My siblings were 24, 23 and 20. We were young for this kind of thing.
We submitted applications for a subsidized bed at a senior facility close to town. It had a kitchenette, living room and a little TV on top of the drawers. We placed his mother’s North Carolina antique quilts on his new bed, his Army Ranger sleeping bag from the 50’s all rolled out on top and freshly framed pictures of his family to help him feel at home.
His new place was a step up from the elderly woman’s basement in the suburbs where he had been renting a room. It got ugly there when Dad, ever the Army Ranger, threatened to discipline her disrespectful teenage grandson, laying out and polishing all of his shotguns for added intimidation. Yes, this new apartment with men and women his own age, in his income bracket, and closer to his children would be a welcome change for all of us.
Dad started going on group shopping trips with his new neighbors and taking the occasional senior computer class. I still have an adorable band poster he made and posted all over his building for a bluegrass show I would be performing in Atlanta. It’s an old Word Art stock image of a woman playing the saxophone on bright orange paper. And I will always treasure the only email I ever received from my old man, as he forged new technological paths with his senior peers. But while he stayed active and kept learning, a fog was rolling in. Walking became more and more difficult, and soon he settled into his tattered armchair, where he watched late night infomercials and ordered products he shouldn’t off home shopping networks.
His behavior became erratic. One evening, in a burst of empathy, he invited a random blind man he met at a bible study to spend the night worried he didn’t have a home. Hours later he kicked him out for taking up too much space. He could be found wobbling to the nearest bar mid afternoon and ordering elaborate meals for himself and friends only to then call me up in graduate school asking for my credit card number to pay for it over the phone. Once, an old friend rang to tell me she’d seen my dad sitting on the sidewalk of Peachtree Road taking his shoes off and rubbing his feet. This was around the time the local music store became accustomed to driving him back to his assisted living facility after he’d wandered off feeling stronger than he was.
When he left the stove on in his kitchenette, it became clear we would have to devise a plan to keep our headstrong military man more on track. He was becoming a liability to himself and the others in the building, but we needed this living arrangement to work out for him. The four children huddled and hatched a plan. We determined to make sure he was taking his prescriptions to fight the dementia, avert the mood swings and keep his heart healthy.
We took shifts: Howell would call in the early morning from college in Texas; Corrie in the mid-morning; myself in the early afternoon; and Hannah in the evening. The one goal was to make sure he took his required pills before we got off the phone. But these calls quickly turned into an elaborate tug of war with our lonely but clever father. He kept us on the phone by withholding information as to whether or not he had actually taken his pills for as long as he could. Dad never did like to say goodbye to his kids and negative attention was better than no attention. We began to lose steam.
One afternoon up in DC, I received an urgent call from my uncle concerned about a bowl of pills Dad was fingering through. Maybe he’d pick out the blue one, maybe the red- but “goddammit I have a system here!” he’d shout. All of our phone calls were in vain. He had poured everything into one bowl and throughout the day would take what he thought was on the docket.
As twenty somethings, unfamiliar with the demands of caring for our quickly aging father, we didn’t fight back. We didn’t know we were years behind the kind of care he needed. We were still his children. No one sits you down to notify you the moment the tables have turned and in fact you are now the caretaker. No one warns you about the moment you realize that dad won’t be getting better, that from that time on he will creep into elderly toddlerhood, then infancy. It wasn’t until he suffered a major fall and the hospital wouldn’t release him back to independent living that we realized the extent of his decline. No, we didn’t fight back: we were fighting to keep up.
My siblings and I were collectively anxious as we struggled to balance wrangling our dad with the demands of our own lives: exams, first dates, paying rent for the first time, moving to new cities and putting utilities in our own names. With little outside guidance and no big picture perspective we couldn’t see that our Dad was heading down a road of full-blown Alzheimer’s, that soon he wouldn’t stand again, that soon he wouldn’t know who we were. We were focused on overdoses and contraindications of mixed drugs, and was he making enough new friends, and could one of the sisters in town go stock his fridge with groceries, please. It was hard to know how to place his care, and we didn’t know that there were skilled nurses available if we would’ve only asked for more help and not been too intimidated by the price tags.
Of course, more than 15 years later, we now know none of those drugs we were so worried about him overdosing on worked anyways. To this day, there is no cure and no treatment for Alzheimer’s and just a few months ago the most promising trial on the horizon for Eli Lilly’s Solanezumab showed no statistical difference from the placebo, a devastating blow to the Alzheimer’s community. My Dad has since passed away after his own struggle of more than a decade with this disease. With his death behind me now I can look back and see that we were, through no one’s fault, always a few years behind.
I can see now that his Alzheimer’s was already full blown during the bowl of pills crisis, though this wouldn’t be technically confirmed for two more years. I can see now that he should not have been driving for years before he rolled through that red light. I can see now that he should have been in an assisted living facility when we had in at an independent living facility, and he should have been in a nursing home when we had him in the assisted living. We were always a few years behind.
But that’s life. We do our best with what we have, and you just don’t know what you don’t know. There isn’t a handbook or outline handed out in life or an alert to notify you of that moment when the roles reverse themselves, and the person who took care of you needs you to take care of them—when you become your parent’s parent.