Taking Care of Ellen

How do you care for an elderly parent who doesn't want you to and doesn't care about herself? You just do

A perfect day in Ellen’s world involves little more than lying in her lumpy bed, dressed only in her lumpy skin, and staring at her lumpy ceiling. She has no job, no hobbies, and no interests. She doesn’t care about anything beyond her next meal and will fight you if you attempt to get her involved in anything, even life’s basics.

Her only son, Dan, my husband, and I hoped to change that.

Ellen’s husband, Randy, died a little more than a year ago, two weeks after Christmas. Before the holidays ended, Randy ominously told his son to put Ellen in a nursing home if anything happened to him.

That may sound easy, but laws prevent families from warehousing the elderly without proper cause. Moreover, any type of assisted living is costly — ranging from a few hundred dollars per week for short visits by in-home helpers to tens of thousands of dollars per year for full-time home nursing care. Without liquidating Ellen’s few assets to trigger financial assistance from Medicaid, she can’t afford a nursing home — and we can’t either. Besides, that’s not what her doctors suggest.

Nursing homes are for people who are physically incapable of caring for themselves. Ellen’s fine, physically anyway, and more than capable of doing everything necessary to lead a happy, productive life. Problem is she refuses to try, though she begs Dan to help her maintain her pseudo independence.

No one’s sure when Ellen lost her grip on reality, and no one alive knows why. All we know is she had a nervous breakdown in the 1950s, when she was in her midtwenties. She couldn’t sleep, Randy once told us, as if that explained everything.

At the time, even the professionals didn’t know much about mental illness. The doctors said she was in a manic state, that she couldn’t turn off her mind. Their solution: shock therapy. Eventually they declared her bipolar and obsessive-compulsive, though it’s unclear if her doctors have ever fully understood her plight or how to manage it.

Shock treatment snapped Ellen out of her manic highs and, for a little while, things appeared normal. She resumed her job as a hairdresser. She had Dan. In photographs around that time she looks happy. The doctors told Randy, a high school coach of various sports, to move the family to a small town, concentrate on living a quiet life, and make sure Ellen took her antipsychotic medication without fail. So that’s what he did.

Anyone peering into the windows of the family’s house would think life was good for the Bowmans in small-town Illinois. Ellen loved to bake, paint, and plant flowers. She doted on her only child. She loved being a coach’s wife and the attention that role brought. She rode her bike around town to run errands, sang in the church choir, and made friends. Her chestnut hair was always perfectly coiffed in the latest style. And, though she and Randy couldn’t afford fancy clothes, she looks well put together in photographs, with her wide smile and gleaming blue eyes.

But Dan knew what others didn’t: his mother wasn’t fine, or even close. Shortly after graduating from high school, he shipped out for basic training. He was tired of tiptoeing around her and tired of their small town.

It wasn’t uncommon, Dan recalls, to return home from school and find his mother, frequently distressed over things she couldn’t explain, lying awake in her dark bedroom. He quickly learned it was best to leave her alone, otherwise he’d endure her endless tears and nonsensical babbling that only seemed to make things worse.

There were also times when Ellen went away, often for months. While Ellen was in a psychiatric ward "resting," Dan became another one of the kids at his Aunt Janice’s house, where no tiptoeing was required.

Dan’s decision to join the military, in 1980, marks the beginning of Ellen’s steepest decline. Though it wasn’t entirely clear at first, looking back it’s easy to see her facade start to crumble away, exposing psychological issues rooted too deep for any pill or treatment to fix. There were a few kooky comments here, news that she accidentally flashed her sister-in-law there, and more stints in psychiatric hospitals.

Cobwebs spread through the kitchen, her paintbrushes became brittle, and weeds swallowed her once-enviable garden. When Randy retired in the 1990s, a park, a day, and a couple of sporting tournaments were named in his honor. He was, and is, that small town’s hero. Afterward, the couple retreated to their living room, where they watched television — mostly sports — during every waking hour.

Randy, weary of Ellen’s life-avoiding excuses, began barking orders at her. Eat your breakfast. Take your pills. Get dressed. Comb your hair. Go to bed. Shut up. Sure, they still laughed at the occasional insider joke, but as Ellen became more childlike Randy became less patient. He wanted to watch the game. She could watch with him or she could go away.

Ellen was, and is, always tired. When someone asks her how she feels, she never says good or fine. She’ll say she’s tired and complain she doesn’t feel well, though she can’t tell you where it hurts. We’re not sure anything actually does hurt, anything fixable anyway.

After Randy died, at age seventy-three — the age Ellen is now — she told Dan she couldn’t bear the thought of a nursing home and said she’d always wanted to live on her own. At first, Dan tried managing her affairs from our home in Charlotte.

He hired in-home helpers, paid bills online, had groceries delivered, called twice daily, and visited as often as possible. In return, he gave Ellen a list of three things to do each day: get dressed, get the mail, and go for a walk — even if only down the hall. She refused. On good days, she put on a robe. She said she was in mourning, but no one bought her fib.

A year passed. We decided to move Ellen to Charlotte, hoping the move would allow us to spend more time with her so we could encourage her to give life another try. We call this hope "Project Blossom Ellen."

We found an apartment complex in University City designed with the elderly in mind. It offers a variety of activities, extra security, and numerous amenities — like an on-site hair salon, a craft center, a movie theater, and more. Ellen seemed excited.

She wanted a turquoise bathroom — said Randy wouldn’t let her have one — so Dan painted the bathroom. She said she wanted a view, so we rented her apartment a month early to secure that wish, too.

For two weeks she stayed at our house while we arranged her apartment in the evenings, confirming our suspicion that it wasn’t good for anyone’s mental health for her to be our roommate. Shortly after moving to her apartment, something went wrong. I went by to take Ellen some lunch only to find her frustrated and struggling to speak.

"Did you eat today?" I asked.

"Pencil staple peanut," she responded.

For days, the doctors weren’t sure: did she have a stroke or did she lose her last marble? Finally, they concluded she had suffered a stroke. Oddly, it was a relief.

Ellen spent almost two months in a rehabilitation hospital, where, again, she seemed to thrive. She was laughing, exercising, and flirting with her doctors. Through veiled protests, she participated in physical therapy and did well. As long as no one asked anything of her, the nurses said, Ellen was a joy.

Outwardly supportive, we braced ourselves and wondered if this was a turning point or if Ellen would revert to her ceiling-staring ways as soon as her new audience dispersed.

Today, we have little hope for Project Blossom Ellen. As before, she refuses to dress, leave her apartment, or do anything beyond lie around and eat. Dan, the ever-devoted son, calls his mother daily, encouraging her to do those same three things as before, usually with no success.

Some days, of course, are easier than others. On good days, I want to be excited for them both; however, the next day, I’ll hear Dan on the phone, exasperated. "Mother, please just try to get some sunshine today," he’ll say. "It will make you feel better. Mother," he’ll pause, his face in his hand, "I’ll call you tomorrow. I love you."

Most of the time, Ellen reminds me of a child. She likes attention and she likes nice things, but she won’t make the effort to clean her room and she’d prefer to subsist on a diet of cereal and candy. She’s not a self-starter and, though she used to enjoy things like painting and gardening, she’s yet to even glance at the stacks of art supplies we’ve given her. And, while she seems to feel better when people are around, she frequently asks us and the helpers we hire to stay away, and she continues to insist that she’d rather live in her apartment than in a nursing home.

I wish I was more sympathetic, but I’m not. I can’t imagine spending any day staring at the ceiling, and I don’t understand what it’s like not to have any interests. I couldn’t create work for my family like she creates for us. I would never leave trash on the living room floor for strangers to collect, answer the front door naked, or give up like Ellen has. Frankly, I suspect she is waiting for her turn to die.

Getting angry with her doesn’t work; she’ll simply retreat further into her foggy reality. Guilt doesn’t work, either, because she doesn’t seem to understand that she could help us by helping herself. Getting frustrated with the situation only makes it feel worse.

Even still, I can’t seem to give up hope. I continue to buy her baking mixes, paint-by-number kits, and potted plants. I offer to take her places and ask her to visit our home for a little sunshine in the garden and unconditional love from our pets. every once in a while she’ll thank me for the offer, but she won’t take the bait.

Ellen and Dan mostly argue these days. He’s still trying to get her to do those same few things; she continues to defy him. Some days that makes him sad, some days mad. Some days he tries not to care. He calls himself a dutiful son doing dutiful deeds, and he gets tense if I bring her up in conversation.

Sometimes I ask Dan if arguing with her is worth it. I remind him these are her last few years and ask if he wants to spend them nagging her. Mostly, though, I’ve found it’s easier to let them live out their family drama and just stand on the sidelines waiting to be called in when needed. I admire my husband for trying to reach the unreachable and know that, were the situation reversed, he would do everything he could to care for my mother, too. I do my best to remain optimistic and often think about what I’d want if I were a lonely old woman. I think I’d want people to continue trying, continue coming around, and continue loving me even on days when I have a difficult time loving myself.

Every once in a while Dan and I think Project Blossom Ellen may sputter to life, but mostly we realize our frustrations are an us-problem, not an Ellen-problem. She’s content to stare at the ceiling. It’s not her fault we got our hopes up. It’s her life, after all. If she wants to lie around, lumps and all, who are we to say she can’t?

Meanwhile, we remain, dutifully, her loving and devoted family.

Rhiannon Bowman is a freelance writer in Charlotte. For the February issue of this magazine, she wrote about the Catawba Riverkeeper and the dangers of coal ash ponds.