Balancing Dependence and Independence
There are many traps and hazards for caregivers to avoid – or at least
understand so when they appear it’s not so startling. One of the
more surprising pitfalls for me is something I’ve been examining and
addressing at our house in recent weeks: my role in supporting or, sometimes, unwittingly taking away Jordan’s independence.
Our approach for Jordan’s care has always been to keep him at home, actively involved, and independent for as long as possible. It’s definitely not the easiest approach since it requires him to work hard to maintain his abilities and me to fill-in the gaps. But we feel it’s the healthiest approach since his quality of life is higher and it forces Jordan to keep exercising his brain as much as possible.
Recently Jordan visited my mother to give me a week-long respite break (thanks mom!). After the visit we were debriefing and mom conveyed some surprising feedback: I was taking on too much responsibility and not expecting enough from Jordan. It was making him feel like a burden. Caregiving is tough work with long hours so reducing workload is a great idea.
I took a close look at our situation and realized that, as Jordan lost more abilities, his independence was becoming more supported by me. But it wasn’t that simple. I also realized that lately, rather than helping him partially finish tasks, I was just doing all of the tasks myself. For example, I stopped asking him to help with little dinner tasks (setting table, roasting potatoes) when I had to repeatedly remind him and both of us grew frustrated. Doing it myself seemed to be faster and less controversial.
So why had this happened? Well I don’t know about other caregivers but reminding somebody over and over again takes a great deal of brainpower (patience, remembering for them, etc). In short, it takes EXTRA work. This is an important fact to realize: Supporting the person’s perception of their own independence is actually more work. And it gets harder as symptoms of dementia progress. That forced me to ask myself a basic question: How far should a caregiver go to foster that feeling of independence?
What I’ve discovered in these last few weeks is that the answer changes constantly. It depends on Jordan’s abilities at that moment of the day. And it depends on my situation that day too. But I think becoming more aware is most important. Now I am more likely to think about things Jordan can do and offer him the options. I suggest less on bad days so he doesn’t need to say “no” too often -- that hurts his confidence. And I give more ideas on good days when he needs to keep busy.
Of course I still do things myself when circumstances require me to be expedient. But we work on projects in the kitchen, garden, etc together more often now and that makes us both happier. And, when you think about it, this new approach just makes sense. I am caring for Jordan partly because we want to enjoy our remaining time together. What could be better than spending than time working side-by-side to accomplish things together?
Rob Epp
