Last night’s meeting did not go the way I’d expected but, then again, little is going as I expect lately.
The assembled included myself and Bill, Meadmaker (Mom’s biological son) and his wife Bobbie, and Mom’s middle sister Patty. Ellie the hospice nurse was accompanied by Leigh, the bereavement counselor and, while it was nice to meet her, I’m not sure exactly what her purpose was last night.
Ellie came right out and said that the rest of the family needs to step up. The entire responsibility for Mom’s care cannot rest on just Bill and me, and she essentially said that if I go down, the wheels come off the proverbial bus. Because Mom has no insurance and is (as of this writing) not enrolled in any government programs (Medicare or Medicaid – I can never remember which is which – or Social Security disability benefits), there is precious little that the hospice program can do for her beyond what they’re already doing. If either Bill or I crashes, the only option is to bring Mom to the hospital, which completely defeats the purpose of hospice and undermines her intention to have control over her death.
Everyone there agreed wholeheartedly that there needs to be some relief sent in Bill’s and my direction. Everyone understood that not only was burnout impending, but that it’s likely already begun. Everyone was appropriately appreciative of the scope of the responsibilities and the enormity of what it takes – in time, energy, and logistics, not to mention physical and emotional work – to get Mom’s needs tended to. I felt very well appreciated.
By the time the meeting was over, very little had actually changed, though. Both Meadmaker and Bobbie stood their ground and said that they were unwilling to tend to Mom’s more personal needs. Now, before any of you gets all indignant in my defense (I love you all for that, by the way) let me state here that I harbor NO ill-will toward either of them for saying no. In fact, I respect their standing firm on what they are and are not comfortable doing. The truth of the matter is that changing my mother’s diaper is difficult for me every single time I do it; I don’t wish the experience on anyone, and I’m not even a little angry or resentful that they’re not willing to pick that part up. I wish I didn’t have to do it, either.
That being said, both of them offered to come and sit with Mom for a couple of hours. Bobbie is between jobs at the moment, so she’s got some free time in the next few weeks, and Meadmaker is willing to come to be with her in the evenings after work. If I can schedule them around people who can tend to all of Mom’s needs, they can provide a decent break for whomever is her primary caregiver. It’s something.
Patty was, as she’s always been, outwardly willing to help, but there’s always something complicating her schedule so she’s about the least reliable among us. She’s agreed to do an overnight once a week so that Bill can get a little more sleep (Mom needs to be moved every couple of hours). Her first overnight will be next Monday; we’ll see how it goes after that.
So, nothing’s really changed all that much beyond the recognition of how burdened Bill and I have been. I’m hoping that with some creative scheduling and a lot of luck, I can make this work for as long as it has to.