The balance: dignity vs excursions
This week, I've had two sisters, a cousin, my mother, one brother in law, two nephews, two nieces and my cousin's daughter here, all to see my grandmother. We had to have a lot of activities for the five children (ages 6-13), which meant excursions. And that meant not taking Gran with us.
It's such a difficult balance -- outings of more than an hour mean changing her disposable underwear while we're out, since she's not continent. Car trips are exhausting. This is humiliating for her, since she cannot do it alone. But leaving her behind is so disappointing for her. Her dignity is fragile, as are her bones, as is her balance, and she doesn't believe she is as fragile as she is. An outing is an enormous fall risk, and legal ADA accessibility is not the same as true accessibility.
I wish we could build her a robotic lower body system, that would allow her to move, climb a couple steps, suction away the excretions. I wish PT would rebuild her failing systems, that we could restore her brain with a known good backup. Part of me wishes for another stroke, soon, so that she can go out with good memories and knowing she is loved. Part of me wishes the last one had been less cruel, that it had left more of her intact.
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I know how hard it is, for her and for you.
And I hope that her final days are not too cruel or uncomfortable.
