now for the raw part

i finished week seven of FMLA with mom.

the last two weeks have been brutal. we were at the beach and it was wonderful and complicated and crazy-making and hard, hard work. it was poignant and tender as we had long conversations about the artwork that she worked with and created. she is aware “parts of her brain” missing and is sad. her word from the week was “vulnerable”. she has to work intentionally to manage all the “noise” that is going on around her. there are times she does not remember conversations or interactions that happened 10 minutes ago and if she is tired or emotional, she lashes out in denial or accusation. i have a new understanding of caregivers and their need to “get out and away” as soon as possible. it is a situation/way of interacting that i don’t believe will successfully change in the long run.


she has a pattern of shutting down and going internal. then she remembers part of an interaction and usually is unable to unpack it in a rational way. then she lashes out and is really mean. then it is fine and she is loving.

on her first morning waking up at the new independent living she had a major meltdown. she was overwhelmed with boxes, the clutter, not knowing where things were, and she was convinced that someone had intentionally “lost” things, like her iPad and towels and individual knick-knacks that were in a box somewhere, not immediately accessible. she fixated on an item and couldn’t let it go. it took a week for me to understand that when she said, “he lost ___.” she was meaning, “he can’t find _____.” but the tone of her voice is nasty, the words are unkind and the other shuts down and takes off.

a friend spent the day with us on tuesday and saw her for a full day. his reflection – “things seem to be fragmented and unexpected. the entire day was spent trying to find lampshades. she keeps on the run, busy all the time. her mood changes are wearying and unexpected at each turn. at times she is very pleasant and funny. it is exhausting. i can see why caregivers check out. in a way, i never knew which end was up. i think she longs to be reached out to but few people are. she seems to have burned bridges and with the stroke, once people are past the curiosity, they don’t come back.”

last week she had a migraine and didn’t tell me. she did not/would not nap Tues/Wed. Both days she seemed more confused as the day went on. she had lunch with old friends and dinner with kids. the next morning and she was wiped out. all the activity is overwhelming, she gets caught up in it, spins around and then crashes.

this time, these days with mom have been invaluable. my skills and training along with my love for her have helped with the transition into a new living situation. we have laughed and cried together. we have shared tender stories and walked through deep sorrow.

FMLA is coming to an end and i am aware of the need to talk about returning to work.

and now for the raw part.