When I was recently in Pittsburgh, giving my sister a much-needed break from taking care of our mother, I heard a sharp cracking sound, followed by something hitting the floor. I was sitting in the kitchen at the time and raced down the stairs to find my mother on the floor, beside the desk, in the den. The keyboard shelf was lying next to her, with the keyboard dangling slightly above, still attached to the computer by a cord.
“Are you okay?” I asked, helping her up and into the chair. She didn’t seem to be injured.
“I’m okay,” she said.
“I fell,” she said.
“What happened to the desk?” I asked, though I already knew the answer. She must have used the keyboard shelf to help herself up from the desk chair, and it couldn’t support her weight.
“I don’t know,” she said, with a sense of surprise.
“How’d that happen?” she asked.
“Did Ollie do that?” I asked, referring to my 14-pound Westie, who had spent the morning downstairs with her.
“Maybe,” she said.
There was no point in arguing, as I was unsure whether she was lying or really didn’t know what happened. It was often like having a child in the house… or maybe a criminal. I’ve never had or wanted either, but I’ve been around enough to know they’ll deny any wrongdoing when confronted. A key difference was that this was an adult who hadn’t done anything wrong. She just didn’t want to admit her disability.
It’s been 20 years since my mother was diagnosed with multiple sclerosis, or MS. For the first 10 years, she was still going about life fairly normally — walking, cooking, and even working. But over the past decade, things declined quickly, to the point of her sometimes needing a walker or more often a wheelchair. Her hand coordination has been pretty limited, given severe tremors. She can sometimes operate the computer since we installed language-recognition software. Other times, it’s just a source of frustration. But she insists she can still do things she can no longer do.
If I ask my mother what she wants to do on the weekend, she might answer anything from painting a border in the bathroom to planting flowers. The former might work if by “border” you’d like a Rorschach-like mural on the wall; the latter would be fine if I didn’t expect to find her laid out in the dirt.
Four years ago, my father passed, leaving my sister Megan and I with the question, “What do we do with Mom?” While we were debating the options, my mother kept calling real estate agents to make appointments to see new homes for herself, ignoring the fact that she couldn’t drive to get to them.
Megan, who had been living with my parents at the time of my dad’s death, agreed to stay while I tried to find a place in Jersey City with a second bedroom for my mother. Somehow, being the oldest made it feel like a forgone conclusion that I’d be the one she’d live with, even though there was the minor detail that she didn’t want to move to Jersey City.
I spent months trying to find a place I could afford but kept getting beat by all-cash offers that ranged from $50,000 to $100,000 over asking price. It was like I was in the wrong game, sitting at a poker table with a hand full of colored fish cards. I eventually shifted strategies to try to find an elder care facility when Megan suggested she could take care of Mom. It made sense financially, as Megan was paying down her student loans, and being able to buy a house with the proceeds from the sale of my parents’ would help. It also made sense because Megan, a nurse, was better qualified.
“Caretaking time represents lost wages. At the hourly wage of a professional caregiver, you’re talking at least $14,000 a year in unpaid service.”
Still, taking care of Mom is a lot of work. Every morning, Megan gets her out of bed, gets her dressed, and fed. She watches her on a nanny cam during the day. She makes frequent trips to and from the bathroom with her. She feeds her dinner. She puts her to bed. I come back twice a year to take over, and within a week, I’m exhausted, not just by the necessary effort but by the additional work my mother creates when she insists on trying to do things herself. Such as right now, I have to figure out how to fix the desk. It would be better if she would do (or not do) things we ask her, but then I just try to remind myself that it could be worse. I have a friend who does everything for her mother, who has Alzheimer’s, and is regularly yelled at for doing it wrong.
I don’t know how my sister or the millions of other caregivers in the U.S. do it. According to the U.S. Bureau of Labor Statistics, upwards of 40 million people provide some level of elder care – without compensation. Most are women, though men are increasingly joining the ranks and currently represent around 40% of those caring for elders. For those who have a senior adult living with them, that care takes an average of three hours a day. And that, of course, goes up for seniors with disabilities.
And those are the hours directly attributed to care. But there are more uncounted hours, like time spent picking up prescriptions. Or the occasional desk-repair project.
Caretaking time represents lost wages. At the hourly wage of a professional caregiver, you’re talking at least $14,000 a year in unpaid service. Plus, there are career sacrifices made from lost productivity and, for many, time away from the job market. I need more than one hand to count the number of friends who have quit or gone part-time in order to take care of family members. A study from MetLife and the National Alliance for Caregiving reported that on average, women lose over $324,000 in compensation to caregiving. The cost to businesses to replace those women caregivers is an estimated $3.3 billion.
But for many, taking on care for older loved ones is the only option. When I looked into the costs of a nursing home, I was shocked to learn that the cost for a shared room at a care facility like the one my grandmother has starts at $4,800 a month. That’s a small, hospital-like room with two beds and a sheet hanging between them. And that doesn’t include more specialized care, like help getting dressed or showering, or additional services, like laundry. When I last visited my grandmother, I arrived close to noon to find her lying awake in bed, still in her nightgown, asking if breakfast was coming soon.
My mother stayed at one of these facilities once after she injured her wrist. While there, they regularly forgot to give her her meds and kept her either strapped into bed or strapped to her wheelchair. Yes, she risks falling when using her walker, hence the reason she was there. But at least at home we regularly work to get her up on her feet to use her legs while she still can. The care facility was too understaffed to give her more than a couple of hours a week of physical therapy. And still, these facilities can cost upwards of $50,000 a year, a bill that, for many, is footed by Medicaid.
Perhaps that could be an option for my mother, but we know she is better off at home — physically and mentally. Recent horror stories from COVID-19 infections at elder care facilities have only reminded my sister and me that keeping her home was the right decision.
And, considering keeping my mother home could save the government money, shouldn’t my sister — and other caregivers like her — get some compensation? What’s between $14,000K and $50,000K? It’s a lot more than just dollars: It’s my mother’s ability to be at home in her own room with hours of individual care and attention. For me and my sister, there’s less guilt, knowing we’re doing what we can.