November 9, 2015
Doing it right doesn't mean it will work
For parents facing really difficult caregiving I get it: we CARE A LOT about doing the right thing and we should. We need every ounce of hope and energy and the decisions we make do matter. But those decisions are not magic.
It saddens me to see parents for whom things have not been successful feeling as if they have failed. It's even worse to see parents feel criticized by other parents. Sure, parents do fail, but the outcome for our kids isn't the measure of our efforts or decisions. In the case of mental illness things do not always come out well. In fact this is why it is urgent that we get more research and do a better job applying what we do know -- because the bad outcomes are horrendous and we have to do what we CAN to increase the chance of success.We stumble along as best we can, all of us, making mistakes and doing our best -- all of us.
But when the illness or circumstances keep our loved ones from wellness too often all that hope and magical thinking can sound like criticism. This should not be. The outcome does not tell us anything about the family or the treatment providers or the health system and NOTHING about the patient's "wanting." We can all do everything perfectly: the patient and the family and the professionals and society AND IT CAN STILL GO WRONG. We can also make mistakes (we all do!) and still come out all right.
Let's not add to the pain and grief of families with judgement and second-guessing. Let's encourage fellow parents to do what they CAN and stop when they must. Let's accept no one does this perfectly anyway. Our job as a community of people who get it is to be supportive of one another and empower one another. That means honoring the choices of others. It means offering our own stories and the information that helped us but not requiring others to come to the same magic formula. Let's not judge effort by outcome, or do anything but hold up our fellow families. And, let's not fool ourselves into thinking that our successes make us better people or more than one anecdotal story.
Families whose loved ones remain ill or have permanently disengaged or have died need the support of the community as much as those just entering it. Their wisdom and experience are necessary and valuable, and their grief is not to be turned away from or made unwelcome. The reason that happens is fear, I believe, fear by association and fear of rejection. We, as a community, are stronger than that!