No one's home

Home Burial essay series: Number 6

“This is not a home and never will be,” the director of the memory care facility tells my wife and I.

There are good people here, she tells us. The resident community is small enough – less than 20 on the memory care side, a few more on the assisted living side – so that it won’t feel like he’s lost in an institution. But she wants to be clear: the care will not be the same as it is at home with family. Her honesty builds our trust in the place, but it isn’t easy to hear.

She shows us his possible future room. With nothing in it, the space feels numb, like an empty college dorm room. This is not what we wanted. This place represents total failure.

***

The young woman walks into his room, quiet as always. In her early 20s, she is more shy than the other resident assistants, slower to get to know. But during Dad’s dying days, when we’re there around-the-clock, she begins to open up. I learn she has trained her cat to go to the bathroom on the toilet. On her day off, she gently knocks on Dad’s door and comes into the room.

She is dressed up, has put on make-up, and brings Dad a potted plant and a card on which she has drawn a bouquet of wild-flowers in black ink. We delight in her artistry, set her gifts on Dad’s altar, embrace her, chat for a few minutes, and then this tender soul leaves, angels surely trailing.

***

Our plan is for Dad to move into our log house. Mom has tended to his increasing needs for 16 years – since she was 50 – and she knew the level of care he’d need would soon overwhelm her abilities. They moved to Wisconsin so we could live on land together with the intention of sharing the care of Dad. But slowly, we all come to doubt our plan. Dad’s behavior is becoming more erratic, more worrisome, demanding more vigilance. Can my wife and I really take him into our home and be the anchors of his care?

On a busy street in St. Louis, for instance, he gets out of the car and starts walking. His brother is in traffic, and yells after him to come back.

Another time they’re visiting my brother’s family in Charlotte. At a shopping mall, my mom and her sister turn around, and he is gone, disappeared. How far will he go in this strange place? They’re frightened as they split up and search for him.

Another time, Adrianne stops at a gas station with him and our two kids, who are 2 and 6 at the time. She pays for gas, turns around, then rushes toward the three. He is smacking at their hands and they’re yelling at him to stop. “Grandpa!” she scolds him. “We don’t hit!” She looks up and sees confused looks among the other customers.

Another time he is with my family for the day. He goes outside and starts walking down our long driveway. “Hey, Dad, can you come back with me?” I ask him. “We need to work on the poleshed.” He doesn’t respond, but walks toward the road. I ask him again. I plead with him. I stand in front of him and am stern with him and he pushes me out of the way. So I walk with him. How far will he go? He already wandered ten miles from home that one time. We get to the gravel road and start walking toward the state highway. But I can’t do this. I don’t have time. I really do have to get to work. “Dad, please, can you just come back with me? Can we just go home? Where are we even going?” Finally, I remember a trick that sometimes works. “Dad, Mom wants us to go back. She wants us to work on the poleshed right now.” He stops, looks at me. He is completely devoted to her. “C’mon, Dad, let’s go back.” Finally, he turns around.

But it’s not fair. He should be able to walk where he pleases. If he doesn’t know who he is anymore, or what the world is, someone should walk with him.

***

The young woman is not the only worker who brings gifts during Dad’s dying days. Another day, one of the few male caretakers, a high school junior, comes in with a bouquet of flowers. He is tall and bouncy, like Tigger. My kids adore him, and he gives us all hugs. “I love you guys,” he says.

Another worker brings us donuts and orange juice from the gas station one morning. Another worker brings my wife and my mom to-go coffee mugs with the words “You Can Change the World” on them.

And this is how it is in this facility that is not Dad’s home. The caretakers, all low-paid, most from working-class backgrounds, come into the room. They bring us gifts. They gaze at dad with us. They shed tears. And then they go back to tending to the other residents.

One morning, I’m there by myself and a manager comes in. Her family is getting ready to go up north for the weekend, but she couldn’t sleep the night before. She was thinking about Dad, praying all night for him. She doesn’t know if we like Christian rock, she tells me, and we don’t have to listen to the music. But she knows how important music is to Dad, and she leaves a stack of her favorite Christian rock CDs with us.

We stand by Dad as he sleeps, talking about him, gazing at him.

“It’s really hard for me to leave,” she says.

***

It’s not just that Dad’s needs are becoming more complex and demanding, or that he often stresses out our kids. In our home, my wife and I have no electricity. We carry in and out our water. We cook on a woodstove. We have an outdoor composting toilet system. Tending to the daily tasks with this infrastructure is challenging enough for us, but it’s hard to imagine Dad navigating our home.

Who will follow him when he wanders? Would we lock him in a bedroom, as we hear some families do to keep a parent with dementia at home? How will this major increase in stress affect the kids? How will homeschooling work with Dad around? His mobility will decrease at some point. He might need a wheelchair someday. How is that going to work? We don’t even have a proper shower yet.

Finally, we admit defeat. One of the most basic responsibilities we have as humans – to care for our elders in old age – we cannot do. We talk to Mom. She’d gotten an insurance plan a long time ago that will cover almost all Dad’s costs at a memory care facility. She’d made peace with this possibility long before us, but let us work it out ourselves. We call my brothers. As always, they’re supportive.

Mom checks out several facilities, then Adrianne and I go to see the one she likes best. On the day Dad moves there, I stay at home. I can’t bare what is happening and know my agitation will only complicate the transition. So Mom and Adrianne bring him. His perception has changed enough so that he doesn’t quite understand what is happening, and he is content when they leave.

Not so for me. This all feels like abandonment, like one more way the infrastructure of our culture helps us to fail each other, over and over and over. If we can’t even care for each other, if we hand each other over to strangers when we are most vulnerable, what exactly are we doing here on earth? I stand by this perspective. It was a failure to put Dad into a facility. But three years later, I also see that on the other side of failure live a lot of spiritual gifts.

***

Her name is Mary. In her 20s, she comes from a tough background. One morning after Dad has been in the facility for more than a year, my brother is in town. We go to pick Dad up and bring him to church, but Dad has to go to the bathroom and needs help, as all dementia residents eventually do.

Matt and I try, but totally fail at the task, miserably fail. What my father did for us, what we do for our own children, we could not do for him, and as my brother later reflects, this failure is profoundly humbling.

“I’ll get Mary,” I say.

Mary comes into the room and tells us it’s okay, we’re not bothering her, it’s what she is here to do. She closes the door to the bathroom, tends to Dad.

“You are a saint,” my brother says to her when she comes out.

In the moment, what he says isn’t hyperbole. When you are thoroughly defeated and a young woman who has been homeless in her life swoops in and does for your father what you cannot, in that moment the radiance of the saints clearly shines through her.

Not that she encounters things this way. We thank her, embrace her, and again she emphasizes: “Oh, it’s what we’re here for.” Then she goes to tend to the others in this place that’s no one’s home.