I received a notice yesterday that I no longer qualify for protected family leave. Of course I never did qualify for FMLA, on account of being a woman in relationship with a woman, fourteen years of rich and complicated interaction the feds don’t deign to recognize or assist. But Oregon, bless its liberal metropolitan heart, has a more inclusive definition of partnership, and I’ve been covered by OFLA this year. But come to find out, the leave you take (even earned, paid leave) reduces the hours you can count as “worked,” and once you fall below an average number of hours worked per week, you no longer qualify to earn leave. It’s a catch-22. Luckily for me, my employers are humane people, and I expect they will hold my job for me, even when I max out my remaining vacation time (I’ve already used up my sick time) and start taking unpaid leave. But it was a scary letter to receive. Made me feel like some of the ropes of my safety net snapped, just when I’m starting to fall.
Another thing we don’t qualify for at the moment is comfort care at home. This week Val cannot get up from her chair and move across the room without triggering a debilitating coughing fit. Friends moved a recliner into her bedroom so she can sleep sitting up, in an effort to calm the nighttime storm in her lungs. We have calendars organizing people to drive her to her daily radiation treatments, do her shopping, bring her food, clean and do laundry, walk the dog, etc, because these are things she can’t currently do. But we don’t qualify for the benefits of hospice care, because Val is still seeking treatment. And we don’t qualify for palliative care, because Val is not officially home-bound, as evidenced by the fact that she went to the ER three weekends in a row. Or so they told us, regretfully, on the phone.
I don’t know what we would do without all you open-hearted, stalwart, magnificent people, near and far. Thanks for falling in step with us all along this journey. Thanks for making this journey your own.
Love,
Deborah
Ugh. I say Ugh.
Oh Deborah. Why must it be so hard? Like always one more thing? I am so grateful for all the love and care that the Val community is giving her (and each other) and that includes all her love for us and self. Hang in there woman,
Love,
Roz
Dear Deborah, let’s all move to Canada! I’m sorry you’re getting stuck in so many of the absurd cracks in our “healthcare” industry. Will any of this change when you move to the new plan, away from Kaiser? Lots of love to you,
Karen (& Shannon)
Ugh. The system is not set up for you. This is so sad. I hold you in my heart.
Thank you, everyone who is there, for being a world of love and care. And, Deborah, I’m forever and deeply grateful for these posts. Sending all my wishes and blessings and hope.
My dears, thanks. And I’m glad these posts help people – it definitely helps me to write pieces of the madness out, try to make sense of it all, try to find the story and notice all the kindness.
Karen, the OFLA thing won’t change. I hope to meet with OHSU folks asap to find out what comfort care they can offer, but they don’t have a home palliative care program. Kyla says Kaiser may have in-clinic palliative care consults available (don’t know why they didn’t mention that) so I’ll call tomorrow and see if we can get an appointment this week for advice on the nausea, etc.
xoxo