Thoughts and updates

I think it's odd that societally we have no training for helping our loved ones when they're dying. I mean, we're prepped thoroughly for puberty, marriage, childbirth. Some people may disagree, but culturally speaking those things are talked to death. But when it comes to dying, and caregiving for those who are dying, there's a huge silent hole in the cultural fabric, at least in this country. If we don't die suddenly ourselves, then at some point most of us have to grope our way through learning to be a nurse. We learn to manage medication lists and logs. We give injections, learn about medical equipment, lift and carry, keep our loved ones clean and comfortable. We watch closely for new symptoms, and we jump to address each one. Along the way we become counselors for ourselves and our siblings and our friends who feel helpless in the face of our struggle and for the friends of our loved ones who feel helpless in the face of death or guilty for not having visited before and so reluctant to visit our friend-deprived loved ones now. We pet these friends of our loved ones, soothing their consiences so our loved ones will have visitors. When the visitors have gone, we dispense more medicines, and quickly, while our loved ones are sitting rather than lying down, we change their bed linens and start another load of laundry. There's Hospice, but hospice so far has not done any training of me beyond handing me a folder full of info about their services. I may sing their praises later, but right now al they're doing is supplying my mom's pain meds--and I'm not even sure they're supplying the right ones. Sure, these meds are keeping my mom's pain at bay. But they leave her crushingly exhausted, dizzy, and confused, not to mention hallucinating. Everyone just nods and says this is to be expected--and yet each piece of literature I've read on effective management of cancer pain says that these symptoms shouldn't be constant if you've been prescribed the correct medicine. I'll be discussing that with our RN tomorrow when he visits. I promise I'll be nice, despite my current ire. The thing is, the medical people are the ones who have all the knowedge of what's to come, and despite repeated questioning, they won't give solid answers. I'm almost positive they know how long my mom has to live, based on her extensive medical history and what they've seen of her so far. After all, my mom's about the zillionth lung cancer patient to come down the pike--even though her cancer is a rarer kind. But will they even ballpark it for me? No. Will they tell me what to expect and approximately when? Not so much. Are there any books to read on that? None that I have found. So I keep stumbling through each new development, hoping I do the right thing.
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A year and a half ago, when my then-14-year-old dog started failing, I'd discuss each new breakdown with my mom: Koka's kidneys were starting to go, so I'd need to give her additional medications and alter her diet. Gradually, I and my boyfriend needed to start taking Koka outside every 3 hours to pee. The meds associated with renal failure make you have to go like that. Then her heart started to weaken, and she started having seizures, which meant more meds. I had to watch her for med interactions, and establish a schedule for when she could take which pills, based on which to give with food and which on an empty stomach. I took that dog to more vet appointments than I can remember, was her advocate, worried over her and fine-tuned her care. One day my mom joked with me and said, "This is all training for when you have to take care of me." The sad and bitter pill is that she was right.
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For the last week I've been watching my mom steadily decline. She's been sleeping a lot more, and eating a lot less. Until today--that is, tonight. She slept just as much through the day, but then perked up at dinnertime. She ate a small helping of dinner, but a big one of dessert. And then she sat up and watched bad television with me for an hour and a half. True, she was zoned out from the pain meds and found WWF wrestling and Spanish-language television fascinating (when she was healthy she scorned these with utmost scruple). This, plus the fact that she's hard of hearing made our television viewing a bit of a challenge for me, as I'm supposed to be cherishing each moment we have left together, and one really should not wrest the remote from a terminally ill mother's hand. Halfway through the 10:00 news, she said "Didn't you tell me yesterday that you had a bread pudding for me? I love bread pudding." I produced it with haste, along with a cup of tea, and she downed it promptly. Thrilling! I don't know what to attribute this change to, but I sat back and marveled at the joy of having an more-or-less ordinary night with Mom.
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It pays to be sick in a family full of cooks. And because our mom has fewer and fewer days to be with us, we've all rallied around the cause of giving her as many great-tasting meals as possible before she dies. I kid you not. Four days ago, my brother brought over a lobster and 6 king crab legs. Mom ate a whole half a lobster, which is one of her favorite things, and a few bites of French bread, but not a bite of the side dishes. Two days later I made a crab salad with my sister's excellent homemade thousand island dressing, and Mom mowed through all the crab meet, some of the veggies, and all the hardboiled egg--leaving most of the salad greens. Being a foodie with a disease-limited appetite has forced her to set her priorities at the meal table. She eats the good stuff. Tonight, John came over and we poached salmon filets in milk and wine, put together a vegetable medly with lemon and butter, and steamed some Yukon gold potatoes. Because Mom told me this afternoon that she'd dreamed of strawberry shortcake, I brought home ripe strawberries, heavy whipping cream, and Bisquick (the new "heart healthy" kind with no hydrogenated crap) and made that for dessert. Yesterday's dinner came courtesy of my brother-in-law, who brought over eggplant layered with mascarpone cheese and sausage and topped with a light homemade marinara. We served it over pasta mixed with sauteed spinach and garlic. I think things are really going to be bad for the sibling gang when my mom's appetite finally fails and we have no call to produce gifts from the kitchen.
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As I'm writing this, I'm drinking a big ol' glass of wine. I need to get some sleep tonight, as I spent last night getting up at 1 and 3 and 5 to see if my mom needed pain meds, and then trying to meditate or pray or empty my mind enough to drop back off to sleep--with only limited success. Tonight Mom was so alert that I tried the old before-bed med method of leaving 1 dose of pain meds in a pillbox on her bedside table so she could take them if she needed them. I'll get up at 5 for a check-in. A storm is blowing into town, and our ecstatic southern california weather people have predicted a quarter inch of rain. I always sleep better when it's raining.