Caring for a person with mental illness presents deep challenges.
Caring for a person with mental illness
Ben knew something was very wrong when his wife Norma woke him up and said “shut up when mum is talking!”
Norma’s mother had, at that time, been dead for just under a year.
Ben recalls it was 5am. Norma, who’d always been a late riser, was pacing up and down in the bedroom, nodding her head, shaking it, silently mouthing words.
“I asked her what was happening,” Ben said. “She answered with an irritability that was contrary to her nature saying ‘Oh do shut up! Why can’t you be quiet while mum’s talking?’”
Ben had never had to handle anything like this before. Since her mother died, Norma sometimes had bleak moods that might last an hour or two, but she always snapped out of it and would be her usual cheery self again. This, though, was something different altogether.
Ben recalls that he got up out of the bed and tried to put his arms around her. She pulled away yelling “Oh leave me alone! I’m just a bit depressed, that’s all!” Her fingers were blue and icy cold. Cyanotic was a word he would come to learn.
Like most of us, Ben knew very little about depression. It’s not something people easily talk about. It can be embarrassing.
By the end of that week, though he hadn’t planned on retiring for at least another five years, Ben was no longer a geo-tech engineer; he was a carer on full-time suicide watch. And he’d have to spin out his super somehow if he was to keep paying the mortgage and have enough to live on.
Perhaps the hardest thing to deal with was the fact that Norma seemed her former self some of the time. It would be like a sudden waking; she’d have no sense that a big piece of time was missing from her life. “Why aren’t you at work?” she asked the first time it happened. She didn’t remember that she’d been in hospital after yet another suicide attempt. Ben had to try to explain. Norma couldn’t believe it was her that he was talking about.
It was a Catch-22 situation. He had to try to explain as gently as he could; when he began trying to explain, Norma at once began to become anxious. Then irritable. Then fearful. The medication was drying up her blood, she said. She wouldn’t take it anymore. Ben would have to be firm with her: if she didn’t take the medication, she’d have to go back into hospital. She might have to go permanently into a nursing home. “So you can go back to work,” she accused him.
Norma’s condition was approximately diagnosed as Involutional Melancholia, a more complex condition than manic depression and one related to a high incidence of self-harm. Ben found that Norma attempted suicide frequently.
Ben said he found solace in going online late at night, when Norma slept, looking for other carer’s experiences of mental illness and for any advice that might help him.
“I read somewhere that I needed to take care of myself or I wouldn’t be any use to Norma. I had to let go of trying to do everything by myself or I would feel overwhelmed by the pressure and my own mental health would suffer,” he said.
“One suggestion I took up was to reach an agreement with Norma that I would manage her affairs when she was really unwell, but hand the reigns back to her on days when she was better.
“But of course that first meant I had to get her to admit that she was in fact quite ill. Mostly she insisted she was okay and ‘just a bit depressed, that’s all’.
“It was only when she was really desperate and unable to get off the floor that she admitted she had a real problem. She couldn’t admit she had mental illness until she was at rock bottom.
“She alternated between complete denial and the belief that the illness was so bad that it – and the medication – were killing her.”
Today, Ben scarcely dares to take his eyes off Norma for a moment. He’s had to harm-proof the house, leaving nothing accessible with a sharp edge or a point, no matches or lighters, the oven is switched off at the main power box.
He feels like he’s out on his feet half the time. If Norma moves in her sleep, he’s instantly wide awake. Through anxiety and insomnia, he’s on the very brink of depression himself. But he has to hang on somehow.
He’s calculated a budget by which he might be able to employ a carer for a few hours a day five days a week. The cost isn’t the only problem though: it has thus far been impossible to find anyone willing to take on the task of caring for someone who’s mentally ill.
A nursing home? He’d have to go back to work to pay for it. If he could get his job back and that, as it happens, is highly unlikely. A new start? For a bloke his age, no matter his qualifications, getting a new job isn’t easy these days and he is not likely to get the flexibility he would require to meet his caring duties.
Also, he doesn’t know if he could live with the guilt, thinking of Norma alone in an institution amongst strangers: after all, they’ve been together nearly 30 years and have three children.
There’s a pointer to another danger in the depression minefield. Ben hasn’t told the kids yet their mother’s ill. There’s little they could do anyway, even if they did know. One is overseas and the other two live interstate.
In fact, Ben hasn’t told anybody – except his boss when he had to explain why he suddenly needed to pull the plug on his job.
The neighbours don’t know Norma’s ill. The illusion’s easy to sustain. As is so often the fact these days, there’s little contact between people on their street.
Long-time friends? It’s Catch-22 again: Ben’s unwilling to talk about Norma to them for fear they will break off contact; by not talking to them, he has, in effect, broken off contact himself.