My mom and I sat last night reading catalogs: she had Pottery Barn, I had J. Jill. She was exausted and fuzzy-minded, and it was taking her a long time to get from page to page. I noticed she was staring at a single spread on window treatments for quite some time. Presently, she lifted her gaze and settled it on Ringo, one of her kitties, who lay on the automan where I sat.
"So...if I take the length of the cat, by the area of the rug, by the depth of the window casing, I'll get..."
"What'll you get, Mom?"
"A square cat."
Friday, March 30, 2007
Wednesday, March 28, 2007
Talking with the unseen
My mom's meds, or her metastases, or the dying process have resulted in her seeing people out of the corner of her eye. Sometimes it's the same person as the one sitting in front of her. Other times, she thinks it's someone else.
"It just happened again," she said tonight as we were chatting after having had bowls of oatmeal for dinner. "I saw someone, just over there." She nodded toward her left shoulder. I allowed as to how that must be a little disconcerting. "Yes," she said, "But I don't think of it as a bad thing. I keep thinking it's your dad. Or maybe Thia Dimitra."(That's my dad's aunt--"thia" means "aunt" in Greek. Dimitra was my father's true guardian angel, a blessing of a woman who died years ago.) We spoke lovingly of Thia for a moment, and then Mom said, "I saw her just today when I was leaving the living room. She looked at you, and then back at me, and she said 'What are we going to do with out her?'"
My mom gets lonely at times, I can tell. Tonight as the wind scoured branches against the house, she said "If you get scared, you can come sleep with me." "OK," I replied. Then later, just as she was sliding under the covers, she said "Are you sleeping in here, or out there?" I was restless, wanting to write and tire myself out enough to sleep. I know if I slept in her room, I'd just stay awake all night listening to her breathe. So I told her I'd sleep here in my old room through the night, then join her for a nap in the morning before she gets up.
"It just happened again," she said tonight as we were chatting after having had bowls of oatmeal for dinner. "I saw someone, just over there." She nodded toward her left shoulder. I allowed as to how that must be a little disconcerting. "Yes," she said, "But I don't think of it as a bad thing. I keep thinking it's your dad. Or maybe Thia Dimitra."(That's my dad's aunt--"thia" means "aunt" in Greek. Dimitra was my father's true guardian angel, a blessing of a woman who died years ago.) We spoke lovingly of Thia for a moment, and then Mom said, "I saw her just today when I was leaving the living room. She looked at you, and then back at me, and she said 'What are we going to do with out her?'"
My mom gets lonely at times, I can tell. Tonight as the wind scoured branches against the house, she said "If you get scared, you can come sleep with me." "OK," I replied. Then later, just as she was sliding under the covers, she said "Are you sleeping in here, or out there?" I was restless, wanting to write and tire myself out enough to sleep. I know if I slept in her room, I'd just stay awake all night listening to her breathe. So I told her I'd sleep here in my old room through the night, then join her for a nap in the morning before she gets up.
A better day for Mom
It was a pretty high-energy day, relatively speaking, for my mom. I'd asked her Cancer Center counselor to come and visit with her, and Mom had written down her appointment as 1 p.m.--but the therapist (a wonderful woman) showed up at 11 a.m., right as the Hospice home health aide was showing up for an introductory visit. I got Mom up, and the aide kept asking if she wanted a shower so finally Mom said "sure." And that's how we got her under some warm water and soap suds for the first time in a week and a half. She hadn't been ready for help before. Afterward, she said it was nice--that she didn't really need any help, but it was nice. The home health aide said that she's a licensed massage therapist also, so Mom has it made. Then today, a Hospice volunteer called and said she'd love to come once or twice(!) a week to give my Mom some Reiki and hang around in case I wanted to go run errands. She's coming for an introductory visit tomorrow morning at 10. Another friend of Mom's, a very long-term friend, showed up also. She hadn't been by since November; they'd just chatted by phone. Mom really got up a head of steam to visit with her. She got up and made her bed (her friend is very neat and proper), and asked me to put out tea and cookies. They exchanged late Christmas presents, and Mom took her into the kitchen to see the new stove that'd been installed since her friend was here last. They visited about an hour. For both visits, I left Mom alone with her friends. These are prescious times; they don't need me hovering through them.
+++
Mom only had time for 2 naps today, so right now she's on a longer one. In 15 minutes or so I'll wake her up and see if she wants some oatmeal or cream of wheat or something similarly soothing.
+++
I read in a book about the death experience that soon before someone dies, they typically have one ore more rally days, during which they can seem almost like their old selves. Today's sweet gift of energy and alertness might have been that day for Mom. On the other hand, it might have been the gift of correct pain meds. The long-acting oxycontin makes for fewer spikes of pain meds in her system, which makes for longer bouts of lucidity and wakefulness.
+++
Mom only had time for 2 naps today, so right now she's on a longer one. In 15 minutes or so I'll wake her up and see if she wants some oatmeal or cream of wheat or something similarly soothing.
+++
I read in a book about the death experience that soon before someone dies, they typically have one ore more rally days, during which they can seem almost like their old selves. Today's sweet gift of energy and alertness might have been that day for Mom. On the other hand, it might have been the gift of correct pain meds. The long-acting oxycontin makes for fewer spikes of pain meds in her system, which makes for longer bouts of lucidity and wakefulness.
I got my mom back, for a little while
Here's the text of an email I just sent my aunt:
"Mom had a really good morning. She got up around 7:30
wanting coffee and breakfast, so I gave her pain meds
first, then some coffee and she read the paper with real
concentration (something she hadn't really done in a few days). I
gave her her usual morning meds with some reservation,
but she wanted them, as she hadn't taken them
yesterday. About 45 minutes later we had breakfast--I
made a fruit medly and gave her some pumpkin pudding
I'd made to try and get her a bit more regular. Then
she took her prednisone, ate a 2nd half of English
muffin, and read the rest of the paper. The
long-acting pain meds really leave her mind more
clear. It was a really nice, normal morning. But then
a little while ater she ran out of energy and went to
bed, but not before having to hit the bathroom quickly
because of an oncoming vomiting session. Sigh.
I just talked our Hospice RN. He says I
shouldn't worry about giving Mom her regular meds,
just her pain meds and laxatives (because pain meds
cause constipation). I'd already been leaning in this
direction, since the other meds just seem kind of
cruel to insist on at this point. I asked him to be
candid with me about exactly where the cancer is in
her body, since I know it's in her lungs and lymph
system and wanted to know where else. He said it's
also in her spine and brain. Which I'd suspected also.
He says that's why she's declining so quickly. He
agrees with me that she probably has little time; I'm
thinking maybe 2-3 weeks, 4 weeks tops, and he said he
never knows for sure, but that sound about right.
Hospice is going to send a home health aide today to
show me how to give Mom a shower and do other things
that can make caregiving easier. Mom doesn't want help
from a stranger in the shower, so that's why I'm just
asking for tips. The aide, a woman from Russia, will come
3 times a week to help us. Also, they're sending someone
twice a week to do light-touch massage/Reiki. That'll be nice.
So that's the news for today. I'm sorry to have to
send it.
I love you,
April
"Mom had a really good morning. She got up around 7:30
wanting coffee and breakfast, so I gave her pain meds
first, then some coffee and she read the paper with real
concentration (something she hadn't really done in a few days). I
gave her her usual morning meds with some reservation,
but she wanted them, as she hadn't taken them
yesterday. About 45 minutes later we had breakfast--I
made a fruit medly and gave her some pumpkin pudding
I'd made to try and get her a bit more regular. Then
she took her prednisone, ate a 2nd half of English
muffin, and read the rest of the paper. The
long-acting pain meds really leave her mind more
clear. It was a really nice, normal morning. But then
a little while ater she ran out of energy and went to
bed, but not before having to hit the bathroom quickly
because of an oncoming vomiting session. Sigh.
I just talked our Hospice RN. He says I
shouldn't worry about giving Mom her regular meds,
just her pain meds and laxatives (because pain meds
cause constipation). I'd already been leaning in this
direction, since the other meds just seem kind of
cruel to insist on at this point. I asked him to be
candid with me about exactly where the cancer is in
her body, since I know it's in her lungs and lymph
system and wanted to know where else. He said it's
also in her spine and brain. Which I'd suspected also.
He says that's why she's declining so quickly. He
agrees with me that she probably has little time; I'm
thinking maybe 2-3 weeks, 4 weeks tops, and he said he
never knows for sure, but that sound about right.
Hospice is going to send a home health aide today to
show me how to give Mom a shower and do other things
that can make caregiving easier. Mom doesn't want help
from a stranger in the shower, so that's why I'm just
asking for tips. The aide, a woman from Russia, will come
3 times a week to help us. Also, they're sending someone
twice a week to do light-touch massage/Reiki. That'll be nice.
So that's the news for today. I'm sorry to have to
send it.
I love you,
April
Tuesday, March 27, 2007
Who are you and what did you do with my mom?
This morning my mom walked to the livingroom this morning from her bedroom--it's a small house so the distance is short--but it was too much for her and she needed to rest at length on the livingroom couch. So I brought her tea there instead of to our usual spot in the dining room. She sat and looked through a magazine and sipped her tea and stared at length at the carpet. By and by she said, "Oh...(sigh)...I just wish I could go to sleep, and wake up, and feel good." When she says things like this my throat closes up and I have to fight my emotions back into control. I said, "I know, Mom. I wish you could, too," and I gave her a long hug. After that, she needed to go back to sleep. She is so exhausted and space-out most of the time that she doesn't seem much like the mom I've known all my life. She stares off into space a lot. Or she'll page through the damndest periodicals (TV Guide, my sister's Tack and Tog catalog, etc.) and scrutinize the text as though it's the most fascinating thing ever. I think it's because she's trying to make sense out of typewritten words, a thing of this world, when she's on her way to the next world. Now and again she'll be my old mom: last night she caught me scratching a mosquito bite and said "Let me take care of that." She examined it closely, then said, "No--it doesn't need a band-aid." Or she'll quaver out the melody of jazz standard. She can still sing, though she can't hold a note, this woman who used to captivate audiences. My old mom. I just want her back. It's so trite to say it, but I feel it so deeply: I just want my mom.
+++
My dear and longstanding friend L. came today to sit with me a while. She came bearing daffodils, one of my mom's favorite spring flowers. She lost her mother recently to cancer, and so she knows what I'm going through. Just her silent presence makes me feel better, particularly now when I feel so isolated and I yearn for company. L. is familiar with what's been going on, and she knows what's coming, and somehow she knows just what to say to me, because she's been there and felt much of what I'm feeling. We went shopping for groceries together, and I felt better afterward doing something chummy like that. Now she's gone and I have a chicken in the oven baking with garlic and lemon and some fresh rosemary from the garden.
+++
My dear and longstanding friend L. came today to sit with me a while. She came bearing daffodils, one of my mom's favorite spring flowers. She lost her mother recently to cancer, and so she knows what I'm going through. Just her silent presence makes me feel better, particularly now when I feel so isolated and I yearn for company. L. is familiar with what's been going on, and she knows what's coming, and somehow she knows just what to say to me, because she's been there and felt much of what I'm feeling. We went shopping for groceries together, and I felt better afterward doing something chummy like that. Now she's gone and I have a chicken in the oven baking with garlic and lemon and some fresh rosemary from the garden.
Monday, March 26, 2007
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.
+++
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.
+++
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.
+++
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.
+++
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.
+++
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.
+++
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.
+++
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.
+++
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.
Glints from the sunlight
Last night I looked in on my mom at 11 p.m., then at 1 a.m. and again at 5 a.m.; both times she needed some pain meds. The good news (I guess) is that she hadn't needed them from 9 p.m. until 1 a.m., and that she didn't need them again between 5 and 10 a.m. She only wanted half a piece of toast for breakfast, and two cups of tea. I made her Morning Thunder, extra strong, with milk in it, and I think the caffeine contributed to her having a pretty alert hour and a half before she went back to bed. I managed to give her a foot rub with lavendar-scented coconut oil. For some reason, the cancer is making her skin extremely dry, and foot rubs and back rubs make her feel a lot better. This morning at 5, when I gave her the pain meds and a hug before we went back to sleep, I said "See you when the sun comes up, Mom." It was a way to get her oriented to the time of day, since she's often confused about that. She gave me a peck and a smile and said, "OK. See you in the sunlight." I feel an urge to write down everything she says and save it up. It's like when I was a kid, wading in the streambeds that run though the hills of our town. I'd see micah glinting in the sand beneath the water and want to pick up every shining piece.
Saturday, March 24, 2007
All the live-long day
A log of my morning to bedtime, for those who wonder what the days here are like:
8 a.m.: Get up and look in on Mom to make sure she's still breathing. (Seriously. I do this.) Tiptoe back out, make coffee, get the paper, and ready her meds.
8:15: Give Mom pain meds if her back is hurting her.
8:30: Boot up my work computer and log in. Check email and triage.
9:00: Get Mom up so she can take her morning meds. Have coffee and read the paper with her; give her a back or foot rub with coconut and lavendar oils
9:30: Make breakfast; make sure she takes her mid-morning meds; wash breakfast dishes
10:00: With Mom in bed for a nap, work until noon or 12:30.
12:30: Make lunch; wake Mom and have lunch with her. See if she needs pain meds; see if she wants to go for a drive.
1:00: If Mom wants to get out, go out. Otherwise, work some more.
2:00-5:00: Usually she's sleeping, so I work, checking in to see if she needs pain meds or water every hour or so. I'm able to keep a pretty normal work schedule this way.
5:30: Start dinner; give Mom coumadin
6:30-9: Have dinner with Mom; wash dishes; give her another back or foot rub; see if she's up for watching the news or a movie; if not, try to think up some other way to engage her mind. Like looking at old slides (see next post).
9-10: If Mom wants to go to bed, ready her bedtime meds. Remind her of what they are and what they are for. Help her get ready for bed. Remind her to put on her oxygen line.
10-midnight: Work if I need to catch up on work. Or prepare updated medication charts and caregiver coverage info for my siblings. Log the day's symptoms for the hospice nurse. Read if I don't need to work. Watch mindless TV.
3 a.m.: Wake Mom to see if her back hurts. If it does, give pain meds.
8 a.m.: Do it all over again!
If it's not a work day, or there's a break in my work, I can sneak out while Mom is sleeping to take care of errands, take a walk, or have lunch with a friend or sibling.
8 a.m.: Get up and look in on Mom to make sure she's still breathing. (Seriously. I do this.) Tiptoe back out, make coffee, get the paper, and ready her meds.
8:15: Give Mom pain meds if her back is hurting her.
8:30: Boot up my work computer and log in. Check email and triage.
9:00: Get Mom up so she can take her morning meds. Have coffee and read the paper with her; give her a back or foot rub with coconut and lavendar oils
9:30: Make breakfast; make sure she takes her mid-morning meds; wash breakfast dishes
10:00: With Mom in bed for a nap, work until noon or 12:30.
12:30: Make lunch; wake Mom and have lunch with her. See if she needs pain meds; see if she wants to go for a drive.
1:00: If Mom wants to get out, go out. Otherwise, work some more.
2:00-5:00: Usually she's sleeping, so I work, checking in to see if she needs pain meds or water every hour or so. I'm able to keep a pretty normal work schedule this way.
5:30: Start dinner; give Mom coumadin
6:30-9: Have dinner with Mom; wash dishes; give her another back or foot rub; see if she's up for watching the news or a movie; if not, try to think up some other way to engage her mind. Like looking at old slides (see next post).
9-10: If Mom wants to go to bed, ready her bedtime meds. Remind her of what they are and what they are for. Help her get ready for bed. Remind her to put on her oxygen line.
10-midnight: Work if I need to catch up on work. Or prepare updated medication charts and caregiver coverage info for my siblings. Log the day's symptoms for the hospice nurse. Read if I don't need to work. Watch mindless TV.
3 a.m.: Wake Mom to see if her back hurts. If it does, give pain meds.
8 a.m.: Do it all over again!
If it's not a work day, or there's a break in my work, I can sneak out while Mom is sleeping to take care of errands, take a walk, or have lunch with a friend or sibling.
Memories and visions
Today was a marginally less difficult caregiving day than yesterday was--from a caregivee perspective. My mom had a smidge more energy today. Also, she was determined to overcome her disorientation about day/time of day. We brainstormed on this, and came to the conclusion that leaving her bedroom window blind up (with the sheers closed) would clue her in: If she wakes and there's light outside, she might get the idea it's daytime. We talked about the fact that her pain meds are making her brain the weensiest bit addled (she's been hallucinating), and that this may be contributing to her penchant for getting up at night and being certain it's morning. Still, it frustrates her no end. Tonight she insisted on having her bedroom lamp on until at least 10 p.m., because before she got sick, her normal bedtime was between 10 and 11 p.m.. She figures if she tries to keep her old schedule, she'll get back on track.
I found a big box full of slides a while back. It was tucked into a shelf in the laundry room. We don't have a slide projector, but we do have a handheld slide viewer. Today we went through a few carriages of slides (the really old, straight kind of carriages), and Mom told me everything about everyone she remembered. There were a lot of photos of her as a girl, as a teen (she graduated high school in 1955), and as a young mother (she married my older sister and brother's father immediately after graduating, and got pregnant immediately after getting married). There were also photos of her mom, my grandmother (or, as Mom called her, "My dramatic and fabulous mother"--very long story that I ought to put into a damn novel). Both my grandmother and my mother were stunningly gorgeous as young women. Real lookers. As soon as I get these slides converted to soft files, I'll post some photos and then you'll understand that I'm being objective about this point. Anyway, it was wonderful seeing these images I'd never seen before. Watching my 70-year-old, cancer-ridden mom looking at such vibrant Kodachromes of her younger self just filled my heart to the aching point. I loaded up one, of her in a spring dress with hat and gloves, standing in a garden for a portrait before church, and mom said "Oh, who is that little girl? Nobody we know now..." and shook her head. "My mom made that dress for me." I hope we get to go through the rest of them before she gets too weak to be up for it.
Also in the slides that showed scenes of my mother's girlhood homes were many of the pieces of furniture that are in her home today: the oak coffee tables, our dining table and chairs, the big upholstered wing chair her mother got at a garage sale. Mom said her mother told her the chair had been custom-made for a very large man. There are photos of the following members of my family sitting in this chair, in its many different upholstery fabrics through the years, and as it transitioned from my grandmother's house to my mother's: my grandmother; her first husband (my grandfather); her second husband (my aunt's father); my grandfather with my mom on his knee; my aunt; my mom; my dad; my dad with my olders sister, older brother, and me on his lap; my older sister; my older brother; me; my younger brother; my younger sister. And this old chair, though it does need yet another re-upholstering, is still solid. My mother sits in it every day. We sit at the same dining table she sat at before she was out of high school.
Today my mother admitted to me that she has been hallucinating. I told her I thought so, as she'd told me the night before that she saw the wind in the curtains and thought I'd flown out the window. She said "Oh yeah," and laughed. She said she keeps seeing little tiny people peeping out at her from around corners. We chuckled at that as we napped on her wide bed. I reminded her that the oxycodone was probably doing that, and she said "Yes, but I can't get along without that," and the topic was settled. This afternoon as we were looking at slides, my mom stared off into the distance for a moment, and then she said, "I wonder why I never played in the cemetery." I answered, "Which cemetery," thinking maybe when she was a kid she'd lived close to a graveyard. "You know, the one down by the bird refuge," she said, indicating our cemetery here in Santa Barbara. "I always wanted to play there--it's so beautiful there. And I always thought it was so romantic." Now, our cemetery is one of the world's more gorgeous ones--it's on a graceful hill that ends in a cliff that overlooks the ocean. As I've grown up, we've often driven through there just for the view and to look at old headstones. I taught my brother how to drive stick shift there, figuring he couldn't do much damage to other vehicles on those wide, curving lanes. So, I just replied "Well, Mom, you're right. It is awfully pretty there," and left it at that.
I found a big box full of slides a while back. It was tucked into a shelf in the laundry room. We don't have a slide projector, but we do have a handheld slide viewer. Today we went through a few carriages of slides (the really old, straight kind of carriages), and Mom told me everything about everyone she remembered. There were a lot of photos of her as a girl, as a teen (she graduated high school in 1955), and as a young mother (she married my older sister and brother's father immediately after graduating, and got pregnant immediately after getting married). There were also photos of her mom, my grandmother (or, as Mom called her, "My dramatic and fabulous mother"--very long story that I ought to put into a damn novel). Both my grandmother and my mother were stunningly gorgeous as young women. Real lookers. As soon as I get these slides converted to soft files, I'll post some photos and then you'll understand that I'm being objective about this point. Anyway, it was wonderful seeing these images I'd never seen before. Watching my 70-year-old, cancer-ridden mom looking at such vibrant Kodachromes of her younger self just filled my heart to the aching point. I loaded up one, of her in a spring dress with hat and gloves, standing in a garden for a portrait before church, and mom said "Oh, who is that little girl? Nobody we know now..." and shook her head. "My mom made that dress for me." I hope we get to go through the rest of them before she gets too weak to be up for it.
Also in the slides that showed scenes of my mother's girlhood homes were many of the pieces of furniture that are in her home today: the oak coffee tables, our dining table and chairs, the big upholstered wing chair her mother got at a garage sale. Mom said her mother told her the chair had been custom-made for a very large man. There are photos of the following members of my family sitting in this chair, in its many different upholstery fabrics through the years, and as it transitioned from my grandmother's house to my mother's: my grandmother; her first husband (my grandfather); her second husband (my aunt's father); my grandfather with my mom on his knee; my aunt; my mom; my dad; my dad with my olders sister, older brother, and me on his lap; my older sister; my older brother; me; my younger brother; my younger sister. And this old chair, though it does need yet another re-upholstering, is still solid. My mother sits in it every day. We sit at the same dining table she sat at before she was out of high school.
Today my mother admitted to me that she has been hallucinating. I told her I thought so, as she'd told me the night before that she saw the wind in the curtains and thought I'd flown out the window. She said "Oh yeah," and laughed. She said she keeps seeing little tiny people peeping out at her from around corners. We chuckled at that as we napped on her wide bed. I reminded her that the oxycodone was probably doing that, and she said "Yes, but I can't get along without that," and the topic was settled. This afternoon as we were looking at slides, my mom stared off into the distance for a moment, and then she said, "I wonder why I never played in the cemetery." I answered, "Which cemetery," thinking maybe when she was a kid she'd lived close to a graveyard. "You know, the one down by the bird refuge," she said, indicating our cemetery here in Santa Barbara. "I always wanted to play there--it's so beautiful there. And I always thought it was so romantic." Now, our cemetery is one of the world's more gorgeous ones--it's on a graceful hill that ends in a cliff that overlooks the ocean. As I've grown up, we've often driven through there just for the view and to look at old headstones. I taught my brother how to drive stick shift there, figuring he couldn't do much damage to other vehicles on those wide, curving lanes. So, I just replied "Well, Mom, you're right. It is awfully pretty there," and left it at that.
Tuesday, March 20, 2007
Update, after The Talk
My older sister, younger brother, and I talked with our mom on Sunday as I wrote about in my last post. I explained everything her oncologist had told me as compassionately as I could. Afterward, she looked at my sister, her firstborn, and said, "What do you think of all this?" My sister replied: "I'm praying for a miracle." And my mom said "Oh, honey..." and started crying. Our tears didn't last long, though, and afterward she said she was relieved that we weren't "hiding behind the elephant in our livingroom" any longer. Today was a dismal, dreary day both outside and in for me. My mom seems to be doing OK with her terminal diagnosis. When Hospice care is called, that generally means you have 6 months or fewer to live. One of the hospice reps who called casually mentioned that my mom has "pretty extensive cancer." I don't know if I can interpret that to mean we'll have a LOT fewer than 6 months, or what. People are always strutting around saying "Yeah, the docs gave me two weeks to live, and that was three years ago!" Whatever; there's no way to predict. And today I was depressed about it all. Because I don't feel up to finding new words about it (despite this being the forum for them), I'll just copy part an email I sent a chaplain/RN friend of mine earlier today:
"As for emotions, mine are all over the board; Mom seems to be at a good place.
She says she didn't think that 70 would be her last year, but then all good things....
"Today I spent mainly feeling empty and sad, and with a huge sense that a big part of my life is being slowly erased. And not just my mom, but also the concept of
my-mom-and-me. The idea that I'd always have my mother's home to come to, where all my memories sit in their corners, and on the walls, and in the rafters for safekeeping; and this town with its beaches where we walked, and its stores where we shopped, and its parks where she pushed us on swings after we blew out the candles on so many birthday cakes; it's all changing, and I can't stop it, and this makes me so deeply sad--and beyond sad, to a place of no feeling at all. My mother is being taken away. I hope she discovers there is life where she goes. I hope she finds my father there, with my dog lying at his feet.
I'd drink, but then if she were to need help later tonight I wouldn't be able to be on my game, and that'd never do, me being caregiver on duty and all. Plus I'd have to deal with a headache tomorrow, since I'm such a lightweight wuss when it comes to alcohol. So I just have to sit with this--and email my friends when I can put my feelings into words that only partially represent them."
Places trigger memories. When my mom is gone, and this century-old house is sold to someone who most likely will knock it over and put up something new, what memories of mine will have lost their triggers? Which are the ones will I never afterward recall?
"As for emotions, mine are all over the board; Mom seems to be at a good place.
She says she didn't think that 70 would be her last year, but then all good things....
"Today I spent mainly feeling empty and sad, and with a huge sense that a big part of my life is being slowly erased. And not just my mom, but also the concept of
my-mom-and-me. The idea that I'd always have my mother's home to come to, where all my memories sit in their corners, and on the walls, and in the rafters for safekeeping; and this town with its beaches where we walked, and its stores where we shopped, and its parks where she pushed us on swings after we blew out the candles on so many birthday cakes; it's all changing, and I can't stop it, and this makes me so deeply sad--and beyond sad, to a place of no feeling at all. My mother is being taken away. I hope she discovers there is life where she goes. I hope she finds my father there, with my dog lying at his feet.
I'd drink, but then if she were to need help later tonight I wouldn't be able to be on my game, and that'd never do, me being caregiver on duty and all. Plus I'd have to deal with a headache tomorrow, since I'm such a lightweight wuss when it comes to alcohol. So I just have to sit with this--and email my friends when I can put my feelings into words that only partially represent them."
Places trigger memories. When my mom is gone, and this century-old house is sold to someone who most likely will knock it over and put up something new, what memories of mine will have lost their triggers? Which are the ones will I never afterward recall?
Saturday, March 17, 2007
Reluctant messenger
Tomorrow I'll drive the 5.5 hours back to my hometown with an urgent and terrible mission: I have to explain to my mother that her oncologist does not want to continue giving her chemotherapy. Her oncologist is incredibly skilled and a nice guy to boot. He does not want to see my mother suffer any more than she must, given her diagnosis (small-cell lung cancer, recurrent and extensive) and her prognosis (terminal). I spoke by phone with the oncologist following a 48-hour hospitalization my mother had, during which she received mainly respite care. She got to be taken care of 'round the clock, got regular meals, regular meds. My siblings had not realized that although they were taking care of her in the evening, overnight, and the morning, there were big swaths of daytime in which she had no energy to stand long enough to prepare meals. Further, she's so confused most of the time she forgets whether she's taken her meds on-schedule (despite an easy-to-use chart and a many-compartmented pill minder). The combination of weakness and badly-timed med consumption landed her in the hospital, where they couldn't do much more than keep her well-fed and well-hydrated. Her cancer has advanced from her lungs to her lymphatic system. So now she has lung cancer throughout her abdomen. And while the cancer in her lungs responded to the chemo-plus-radiation routine, the cancer in her lymph system, which received no radiation, spits in the face of chemo. She has months.
As the cancer has advanced and the chemo has circulated through her radiation-injured brain, my mother's cognitive function has suffered. Examples: While she was in the hospital, she kept telling nurses that she used to have cancer, but now it's in remission. If she takes a nap during the afternoon and wakes at twilight, she thinks it's early morning (despite many clocks in the house), and begins doing morning things like making coffee, trying to get the paper, and *headdesk* taking her morning med doses (rather than the evening ones). In short: My mother cannot be alone for more than 2 or 3 hours at a time. But she has been hope-filled: she's convinced she can get better. It's like watching a crippled kitten try to play. And tomorrow I have to tell her that her doctors are pretty sure she will not get better, and I need to ask her if we can call Hospice.
I'm hoping she'll say yes: we need Hospice services badly. When I'm not there, my siblings must take turns supporting my mom. Here's how it needs to work, starting now (a ramped-up version of what they were doing): Each day someone must be there to prepare breakfast and make sure she takes her morning meds. If she has even a twinge of pain, they must make sure she takes a pain med before it gets out of hand. Then someone comes by and makes her lunch, checks her pain level and suggests meds if needed, sees if she wants to take a drive somewhere or perhaps a walk to the corner, or to sit on the porch in the sun for a while. Someone needs to be there at tea time to check on her med schedule and pain level, to see if she wants a snack. And then there's the dinner-and-overnight shift. And someone has to be on standby to take her to medical appointments. I go every two weeks and stay at 1 week, and during that time, nobody takes shifts except to come give me a break.
As Mom's cancer advances, she'll need even more care. And that's why we need Hospice. But we can't get Hospice until my mom understands what's going on with her and makes the decision to not seek another chemotherapy protocol. I pray that's what she does. If she insists on chemotherapy, it will need to be aggressive. And it wouldn't make her better. It wouldn't extend her life. The chemo she's already had horrified me in its devastation of her. I don't know if I'd be able to bear seeing her go through something even worse, when we could spend our last months together so differently.
It feels horrible to ask for good wishes in this mission. I'm going to ask my mother to gather her courage and surrender. More heartrending: I'm going to need to ask her more than once, since she doesn't remember things well. And I'll need to keep reminding her about the reason for the asking. It'll be the worst thing I'll ever have had to do. It will be one of the kindest things I'll ever do for anyone. Except, perhaps, to care for them through their last days and to sit beside them through their last moments.
As the cancer has advanced and the chemo has circulated through her radiation-injured brain, my mother's cognitive function has suffered. Examples: While she was in the hospital, she kept telling nurses that she used to have cancer, but now it's in remission. If she takes a nap during the afternoon and wakes at twilight, she thinks it's early morning (despite many clocks in the house), and begins doing morning things like making coffee, trying to get the paper, and *headdesk* taking her morning med doses (rather than the evening ones). In short: My mother cannot be alone for more than 2 or 3 hours at a time. But she has been hope-filled: she's convinced she can get better. It's like watching a crippled kitten try to play. And tomorrow I have to tell her that her doctors are pretty sure she will not get better, and I need to ask her if we can call Hospice.
I'm hoping she'll say yes: we need Hospice services badly. When I'm not there, my siblings must take turns supporting my mom. Here's how it needs to work, starting now (a ramped-up version of what they were doing): Each day someone must be there to prepare breakfast and make sure she takes her morning meds. If she has even a twinge of pain, they must make sure she takes a pain med before it gets out of hand. Then someone comes by and makes her lunch, checks her pain level and suggests meds if needed, sees if she wants to take a drive somewhere or perhaps a walk to the corner, or to sit on the porch in the sun for a while. Someone needs to be there at tea time to check on her med schedule and pain level, to see if she wants a snack. And then there's the dinner-and-overnight shift. And someone has to be on standby to take her to medical appointments. I go every two weeks and stay at 1 week, and during that time, nobody takes shifts except to come give me a break.
As Mom's cancer advances, she'll need even more care. And that's why we need Hospice. But we can't get Hospice until my mom understands what's going on with her and makes the decision to not seek another chemotherapy protocol. I pray that's what she does. If she insists on chemotherapy, it will need to be aggressive. And it wouldn't make her better. It wouldn't extend her life. The chemo she's already had horrified me in its devastation of her. I don't know if I'd be able to bear seeing her go through something even worse, when we could spend our last months together so differently.
It feels horrible to ask for good wishes in this mission. I'm going to ask my mother to gather her courage and surrender. More heartrending: I'm going to need to ask her more than once, since she doesn't remember things well. And I'll need to keep reminding her about the reason for the asking. It'll be the worst thing I'll ever have had to do. It will be one of the kindest things I'll ever do for anyone. Except, perhaps, to care for them through their last days and to sit beside them through their last moments.
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