We are four years into his dementia. The professionals call this slow descent The journey, but I say that Holding someone’s hand while they drown gets closer to the daily truth of it.
I say Honey out of habit now, and every time I remember the sweet weight that word used to carry I envy his forgetfulness, because you can’t grieve for what you’ve forgotten you had.
…
I’ve forgotten how to be your partner, he says one day. I wonder if it would help him to know that I’ve dropped that thread, too, somewhere in this maze we’re wandering in. I’m his caregiver now, and the distance between partner and caregiver can’t be measured.
Sometimes he surfaces, says he feels like he has no center anymore, nothing he can trust about himself, and I can’t say that isn’t true, because it is.
Every day before I get up I vow to do no harm to anyone.
I try and succeed and fail to be kind.
Sometimes it feels like I’m drowning, too.
Children With Complex Medical Needs Belong at Home
Children belong at home with their families. For children with complex medical needs, this is still true. ... When children are dependent on medical...
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