Of course it was Bette Davis, not me, who came up with that saying, but I can testify to it, having spent the past week in a hospital room with my (almost) 85-year-old mother, who is the advanced stages of Alzheimer’s disease. Mom has been in the hospital for 10 days (had a fall, got a urinary tract infection, ecoli, and pneumonia) and last week I thought she was not long for this life. But then she perked up a bit on Wednesday, so I agreed to a PEG (stomach feeding tube) on Friday, and she’s been more subdued (maybe from the anesthesia) since then.
So, I asked about Hospice, and Mom’s wonderful doctor agreed that Mom would maybe get better care there than in the nursing home, if she’s confined to bed. So, a Hospice nurse came to evaluate her today and said she doesn’t qualify… it’s not clear that she has 6 months or less to live. So, unless the doctor can get that evaluation changed (and Hospice is returning tomorrow) I’m trying to feel better about her being back in the nursing home. (And second-guessing my decision about the PEG tube… although at some level I still think it was the right thing to do. None of this is black and white.)
It’s not that Lakeland hasn’t given her good care these past 4 years—they have. But I think the ambulatory residents get more attention than the ones who are bed-ridden. So I’m a bit worried about her returning there.
God keep sending “angels” to help me, though. Not only the physician, Teri Oaks Dyess, who worked for me, and Mom and Dad, back at Phidippides Sports in the ‘80s (she taught aerobics with me!) but also a wonderful speech pathologist, Merlene, who just fed Mom some ice cream… her first real food in over 10 days. Merlene says that if the physical therapists at Lakeland get Mom up in her wheelchair every day and if the speech pathologist there works with her on her swallowing and gives her some “comfort snacks” like pudding or ice cream, she may perk up even more and have some quality of life for awhile. (Her main nutrition will probably always come from the PEG tube feedings now.) Because she’s been in the bed (and so sick) for 10 days, she won’t even hold a spoon to feed herself right now. But those skills could come back.
When she’s awake, she says things like “Let’s go!” and “Is it time to go?” And when we move her to change her or bathe her, she cries out, “Stop that!” or “Please don’t do that!” I think her back is still hurting from a fall about a month ago. But she forgets our offenses pretty quickly and every now and then we see a smile. But most of the time her eyes are kind of glazed, and she doesn’t follow me with them when I move from right in front of her. So… it’s hard to tell what’s best for her. Teri (Dr. Dyess) will come back by later today, and the Hospice nurse will return for another evaluation tomorrow. Meanwhile, I’m just trying to engage her and comfort her. And to be peaceful about whatever final decision comes from the Hospice gatekeeper. Because, it’s really out of my control.
In my post last Friday I said that I need a hero. That night on the phone, my sweet husband said he was my hero, and he really is. His informed wisdom—as both a physician and a priest—is helping me through this. But I just don’t want it to be so damn hard.
Of course I picture myself in Mom’s situation down the road and I wonder what I would want. While it’s easy for me to say I wouldn’t want a feeding tube, I hear that without it, Mom might suffer a painful death from malnutrition and dehydration or have to be on IVs for a long time, which can cause problems. And her chances of being bed-ridden and her skin breaking down and her losing all functioning are stronger without the nutrition she’s receiving through the tube now. So maybe this was the most compassionate decision. And maybe I would also want that.
You know, once her journey is over, maybe I’ll try to write down some instructions for my children about my end-of-life choices. But at the end of the day, they still might have some tough decisions to make. It’s just not easy.
I’m reminded of how much Anne Lamott’s book, Help, Thanks, Wow (which I recently read) blessed me, and I hear her voice whenever Mom cries out, “Help me!” I’ve thought she was crying out to me, or the aids or the nurses, but now I’m wondering if she might not be crying out to God. If so, I really hope He hears her and answers her with comfort. Soon.