When her husband was diagnosed with Alzheimer-related dementia at the age of 64, it was scary. The first thing she did was reach out to the local Alzheimer Society to learn about the disease and how to manage it. She told herself, “I’m strong. I can do this.”
Even as her husband’s dementia progressed, she continued working full-time as Associate Dean of Science at Western University while taking full advantage of respite opportunities available in the community. It wasn’t until three months after her husband moved into a long-term care home that things suddenly caught up with her.
She’d bought a fresh turkey for Thanksgiving. But that Sunday, she discovered she’d put it in the freezer by mistake. It was the proverbial straw that broke the camel’s back. Swearing, she took it upstairs and threw it in the pool.
She remembers her daughter coming outside. She looked at her mom and asked, “New way to thaw a turkey, Mom? What’s going on?”
“Meanwhile,” Milligan recalls, “I was just a weeping heap by the side of the pool. That’s when I realized that I just couldn’t cope anymore, that I had just truly stretched beyond what I was capable of.”
She sought the assistance of her family doctor. She was exhausted and depressed. At the end of October, she took a leave from work. She returned to her job eight months later, recharged, refreshed, and – more importantly – more attuned to the signals that told her she was getting overwhelmed.
She learned to step back when she started feeling anxious, to remind herself that she couldn’t do it all. She began to recognize what she had control over, and more importantly what she didn’t have control over.
As her husband’s dementia progressed, he became uncharacteristically violent. Police were called into the long-term care home. He was even held for psychiatric assessment at a local hospital because of his behaviour.
Before “the turkey incident”, Milligan had been lying awake at night, waiting for the next call from the long-term care home to tell her that her husband was going back to the hospital or that the police were going to be called again.
Later, she came to understand that her husband’s behaviour was beyond her control. After talking with another family caregiver familiar with long-term care homes, she learned what she could reasonably expect from staff at the home where her husband was living.
She was able to set boundaries. She told long-term care home staff, “Don’t call me every time Gord does something. I’m not going to be coming in at two in the morning.” (Which she had been doing and was part of what had pushed her over the edge.) “If something catastrophic happens: yes. But just because he pushed someone, don’t call me, because there’s nothing I can do about it. That’s your responsibility.”
She recognized that long-term care homes are legally obligated to inform families about certain types of incidents, like falls. “But they don’t have call at two a.m.,” she came to realize. “They can call the next day.”
Milligan’s advice for other family caregivers in a similar situation?
- Acknowledge the stress you’re under before you have your own frozen turkey moment.
- Accept that you can’t do it all.
- Understand what’s under your control and what’s not; and make peace with that.
- Identify the signals that tell you you’re getting overwhelmed.
- And learn to set your own boundaries.