Seems like forever since I've written. Looking forward to getting in the groove again.
My first day home on leave and it was a busy one. Mama and Daddy came by, and the Hospice nurse and Hospice social worker.
John's vitals are still strong. He does drag his right foot more and he has less control of his right hand/arm. His right eye is droopy and puffy underneath. But he eats good, rests all night usually, and still cracks wise. Lately, every noun is the word 'internet' so it's hard for me to follow some of his statements. Such as, "If you go to the internet, we need internet on the internet".....literally how it goes, especially when he's tired.
The social worker came bearing bad news. We hoped the Hospice higher-ups would let us be 'self-pay' and help us out with our bill, but since John has insurance, we can't. This means we have to meet the deductible & out-of-pocket, then insurance will cover up to his lifetime limit, which is about 1/3 already used. There is a new part to his insurance, if we opt in, that would raise the limit for Hospice care--actually make it unlimited....after deduct/o-f-p. Either way, we don't have the thousands a month Hospice costs, so we'll make payments. Unless I can get him on SSDisability, which will enroll him in Medicaid, which will cover Hospice totally, plus meds, I believe. Will try to finish the SSD stuff tomorrow.
My replacement, Rebekah, did well yesterday. She taught while I watched and tried not to interfere too much. It was hard not to jump in when every little noise was made or kid got up or talked too much. She will toughen up and do great. Mama is going to keep volunteering.
Sent a letter to the parents explaining briefly why I was taking a leave.
The bookkeeper helped me place the days for each pay period and my last leave day would be used up on May 8th. It is such a relief to be home with John.
One more broken item: a glass bottle of makeup remover. John was putting it back on the little bathroom table after his parents left Saturday. I move most of our things out so they can have easier access. It was a sticky, gooey mess on the tile but it came up for the most part. Still finding little pieces of glass in the corner of the bathroom.
Rushed to get my report cards done last Friday. Lame comments on most of them! Managed to get several days sub plans done for Rebekah, loaded the treasure box and soap dispenser, updated the web page, ran off a gazillion worksheets, checked out books from the library, unrolled cotton balls, graded tests and uploaded scores, filled out paperwork on a troubled child, all since Friday. Even taught a little in between.
John's tumor bulge is weirder and weirder. It's getting longer, swelling at both ends, with more fluid pockets and one area in the middle of the middle that bleeds when I take the bandage off. Today it looked like there were fewer fluid pockets and that one possibly leaked and is now a caked mess at the bottom of the bulge. Sharon cut his hair Sunday and it's MUCH easier to wash his hair and pull the bandage off. The last time she cut it, he thought that would be his last haircut ever. nanny nanny boo boo it wasn't
I'm taking pictures of the bulge every few days. John says I need to sell them one day and make money. I'd like to take my blog posts, email updates, and pictures and write a book about this experience. We've had a lot of questions along the way, most of which received the answer 'everyone is different.' No one, not even the doctors, would commit to a definite answer of what to expect or the order of decline. Friends who have been through similar experiences with cancer are more help with information. Imagine a book that walks people through the ups and downs and stages of decline, as well as services available, and what to do and not do.
John enjoys getting phone calls. He's so bored, even with me here. He especially loves it when his niece calls.
It's frigid again, in the 20's at night. Tired of it and ready for spring.
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