I’ve been away from Bali and Bob for twelve days now. Made, my office manager, visits Bob and sends me stories along with photos. They’re written with such innocence that they touch my heart and are another reminder of why we’re so lucky that Bob’s in Bali.
He’s cared for by four caregivers who aren’t worked to death, who get a fair wage in their culture, and who genuinely care for my husband. He has a dog and get’s to be out in a garden whenever it isn’t raining and out in the community. He doesn’t seem to care that his carers aren’t fluent in English – the five of them communicate in their own language with an understanding of Bob’s moods and needs.
And still as the responsible one for Bob’s well being I sometimes worry and wonder if I’m doing the best for him. Perhaps it’s similar to being a parent - that being in charge of another human being goes hand in hand with worries about whether or not the best is being done for that person.
I have a close friend in her eighties whose husband was given the dreaded Alzheimer’s diagnosis a few years ago. He’s sliding deeply into the disease quicker than Bob did and now she’s faced with burn out as his primary caregiver. She has to make the very difficult decision of placing him in a care unit. Her own health is suffering and her anxiety level has risen so high her trusted doctor has her on tranquillizers.
And still her daughter implies that placing him in a home is cruel. People who don’t actually care for a person with dementia really have no idea how utterly difficult it is to live with this disease. Yes, we may find ways to cope and ways to make the best out of the situation but it’s still extremely difficult and emotionally challenging. And for my friend, late in her life, it’s physically taxing.
The websites and services for dementia caregivers all warn that caregiver’s lives are often shortened just by doing what they do – I distinguish between those who have this as a career and can go home at night and those of us that can never go home.
The decision to place a person with dementia in a care unit has to be one of the hardest of all. On one level it’s a relief but along with that comes guilt that perhaps we just didn’t try hard enough or that we’re weak or even worse, selfish.
I grappled with this for well over a year and a half. At first I wouldn’t let the thought in that I was facing burn out. On the rare good days I thought, “This isn’t so bad. I can do this!” And then I’d stub my toe or do something else minor and have a melt down and be reminded that I was at the end of my tether.
My friends could see what was happening while I couldn’t. They were my barometers and my lifesavers but I had to come to the conclusion on my own that being the primary caregiver for Bob was no longer possible. I had to realize that it wasn’t a sign of weakness or that I didn’t love him enough but that it was now reality.
My heart goes out to my friend (and anyone) facing this decision. It’s huge and grieving will come along with it. It’s the end of life as she’s known it for decades and building a new life in her eighties will take all her survival skills.