When your loved ones refuse support: prologue to becoming a caregiver

by Dan Berg

Before I became a caregiver to my in-laws, there were signs that they needed to take action, but they insisted everything was fine. Although I had cared for a friend with advanced dementia, I did not recognize the early signs when they rejected our offers of having them move in with us, saying that they were doing just fine. In fact, he was already the caregiver, and she already was not only weak, but displaying memory issues as well as comprehension. But they stubbornly refused assistance, even though they relied on us for everything when it came to family gatherings, and no longer entertained people on their own. They had people cooking for them and visiting them, and ate often at Tim Horton’s, and so after a fashion, had kept things going. But she often slept part of the night in her favourite chair in the living room, not feeling like doing the half flight of stairs up to her bedroom, and, he often gave up on getting her to bed, just going up to bed and leaving her. We were able to reconstruct all of this after the break-down, once he was talking about what life had been like up to then.

Finally, their system fell apart, when she was in difficulty, but they decided not to call an ambulance, despite being urged to do so by friends. They were ashamed to call for something that seemed trivial, and as a result of their shame-based error of judgement put her health in real danger. Finally, he called his children and after 24 hours of her being in some difficulty she finally got some assistance from us. By then she had open lesions, her urine was almost black, both things which we had the experience to deal with, and so we her patched up, got her into bed, and then brought them back to Pakenham with us the next day. Now their children could and did lovingly and firmly say, “You’re not returning home.” They would never again return home to live, something he still believes was the wrong decision.

I advise all of us caregivers to have agreements with those close to us, that when we start to fail, establish some agreed-to benchmarks, that we trigger POA so that we don’t get ourselves into trouble because of our failing capacities and denial. Work now with those you may end up caring for to get POA’s drawn up, and make sure they stay up to date.