November 26, 2017, by Paul Cavanagh, caregiverexchange.ca
She could have chosen to simply soldier on. But instead, she decided it was time for her mom to move to a long-term care home. What prepared her emotionally to make this difficult decision? Important conversations she’d had with her family and her mother’s family physician some time before.
Decide ahead of time - what's your limit?
Lloyd had explained her situation to her mom’s physician when her family had decided to have her mom move in with them. She’d wanted to know what to expect as her mom’s multi-infarct dementia progressed. And she’d wanted to know, honestly, whether looking after her mom was something she and her young family would be able to handle.
“What he told me then was the best piece of advice,” Lloyd says. “He said I needed to decide ahead of time where the line was going to be. What’s my limit? What’s my family’s limit?”
This prompted Lloyd to have a conversation with her family. She explained to her young children what was happening to their grandmother’s memory by laying out a puzzle and gradually taking pieces away. The explanation put them at ease. And it stuck with them, so much so that they still remember it now as adults.
Once her children understood what was going on, the whole family was able to sit down and have a discussion. “As a family unit, we had to agree,” Lloyd says, about caring for her mom. “How far do we want this to go? We’d sit down every three months. We’d ask, ‘How are we doing? Do we want to go for another three?’”
That allowed everyone to be open and honest with each other. When the going got tough, Lloyd knew her children would tell her if she was losing it. She also knew that they’d speak up if they were feeling uncomfortable.
Reaching the limit
Five years passed before Lloyd’s fateful walk. Up to that point, she thought she’d been coping all right. But the fact was her family hadn’t been able to leave her mom at home alone for a year, even with help coming in. There was no chance for Lloyd and her husband to get away with the kids for a much-needed break.
The family had another discussion. They knew they’d reached the line. It was a difficult decision for everyone, but the fact that they’d been open and honest with each other from the outset avoided even greater heartache.
“As a caregiver, you need to be painfully honest with yourself,” Lloyd says. Understanding what you can and can’t handle – whether that’s doing certain aspects of personal care or cooking meals – is vitally important. You may have people coming into your home to help you with these things, but they’re not there 24/7, and so, some of it will inevitably fall to you. Understanding what the person you’re looking after will accept is something else to consider.
Early conversations are crucial
It’s best to talk all this out early on in your caregiving journey, if at all possible. There may be times, particularly if your relative is in hospital, when you’re asked to make snap decisions about who’s going to look after them. The experience can be overwhelming, to say the least; even more so if you’re going into it unprepared.
Knowing yourself is key. So is talking things through with your family on a regular basis and making decisions together.