I'm Sorry, This Is Hard.

I attended Teepa Snow’s workshop on Tuesday and it was just amazing. She’s a tiny, little woman with boundless energy whose North Carolina accent slips out periodically, especially when she is modeling a patient with dementia in her efforts to teach caregivers. She has made a career out of helping family and professional caregivers understand what, exactly, is going on with their care receivers, and why, and how best to help them minute by minute. Her techniques are so simple, using so much plain common sense and an understanding of what is happening to the brain, eyes, and body of the care receiver, it is heartbreaking to think that they are not taught everywhere, to everyone.

It seemed to me that her points could really be boiled down to two things. The first is something I see so often with my support group attendees and the caregivers I counsel, and it is one of the hardest things of all. It is the necessary realization that this is no longer your loved one. The disease has changed them, and you must change as well. I struggle to get wives to understand that they are no longer dealing with their husbands, adult children to realize that this is not their mom anymore – and you can’t expect them to know and do what they used to know and do. You can’t get irritated or angry at what they are doing, or not doing.

So many caregivers get angry that, “My mom says she is ready to go but she isn’t even dressed. It’s so annoying!” or, “My husband said he took his medication but I can see he didn’t. He just does it to irritate me!” I tell them over and over, you have to realize they aren’t who they were, they don’t have the abilities they had, they aren’t just doing this to piss you off! You have to let go of the person you knew, and all the ways they were, and everything you had, except for shared love. My father would often trigger me with behaviors and repetition, but I had to keep reminding myself that it was the disease, not him.

The other thing was, the ability to apologize, to diffuse a situation, to take blame upon ourselves – something none of us are very good at doing. Teepa makes the argument that any time a situation goes wrong and emotions and negative behaviors are triggered, it is we the caregivers who must take responsibility, as difficult as that might be, because it is we who are of sound mind. We must take a moment, calm down, face our care receiver and say we are sorry, say we didn’t mean for it to happen, say, ‘I’m sorry, this is hard.’ Doing this will make our care receiver feel they have been heard and understood, and that they are not just the results of their disease.

It seemed to me that that phrase, alone, sums up caregiving and dementia and illness and pain and everything involved in our lives now. I’m sorry, this is hard. This is hard for caregivers, and hard for care receivers and hard for families, and just darn hard all around. I am fortunate in that many of the issues and techniques she was describing were for people earlier in the disease than dad, although, admittedly, I probably could have used her ten years ago. But they are still good messages to hear. This is no longer the loved one you know, but it is someone you love, and I’m sorry, this is hard.