THANK YOU to everyone for the emails asking how mom is!!
i've just returned from the hospital and have bunches of good news. my visits are twice daily-- a.m. and p.m. for about 3 hours each visit. my brother is now out of town, but he's been visiting each afternoon so mom has "enough" company during the day-- and so she can rest.
the surgery was 100% successful and (yay!) mom certainly survived. docs say every cancerous tumor was removed so we're hopeful nothing decides to return. as of now, there's no plan for chemo or radiation. they did take her neck lymph nodes out because they were "getting bumpy." it was either do it now or do it later-- they made the right choice as far as i'm concerned.
her traech prevents her from talking-- so does the enormous amount of tongue swelling... but the good news here is that she's already been traech down-sized! they put a smaller tube in this morning-- this will stay in 24-36 hours, then she'll get the final traech which she wears only 24 hours... then they close her up using tape until the hole closes completely by itself. she showed off a bit this morning by putting her finger over the traech and said "1-2-3" out loud! the biggest smile was on her face-- i had no idea this was possible-- thought talking would come only when the damn thing was removed entirely. tears came down. sheer joy!
i'm being trained on tube feeding. i must pass the test consistently before they'll let her go home and leave me in charge. it's not a difficult thing-- but it is rather scary. my greatest worry isn't my performance, but the limited number of times mom is able to take nutrition. her pre-surgery normal meal could be a half a crabcake and milk!! docs and nurses have certain nutrition stats that patients must attain-- mom's intake is below those. while they are coming around to understand she weighs only 85# and eats like a bird normally.... they're really watching to ensure she's not trying to pull a fast one on them! i can appreciate their efforts but facts are facts on mom's normal intake. she simply cannot take more than 100 ml of water and 100 ml of nutrition-- and she'll do that only once or twice a day! (by the way, their "meal" goal is 200 ml water and 200 ml nutrition, 3-4x day so you can see why they worry!) thankfully they've agreed to smaller intakes every 2-3 hours. mom has been comfortable with this and that alone is why they continue to allow us this leniency. the last thing we want is bloating, nausea and/or diahhrea.... if she has too much, that's the result.
home healthcare has been arranged but i'm pretty sure we won't need them as much as we did with prior surgeries. we'll certainly need the nurse to ensure infections don't creep in and wounds heal, but there's no post-op physical therapy or occ therapy this time around.
if all goes smoothly mom may get home by weeks end. her pups misses her but has been a good girl by behaving herself! she gets a little mad as one would expect... but so far, no accidents or mischief.
that's it in a nutshell! :)
Tuesday, June 9, 2009
Tuesday, June 2, 2009
6/2/09
i'm tired!! all of mom's gardens (vast in numbers) are weeded and the trees are trimmed and branches cleaned up. it's taken me 3 weeks to complete this project and i hope (!!) tomorrow brings that to an acceptable end. 'course the deadline wasn't anything discussed, but i knew it must be done before mom's surgery on thursday.
with school out now, my lil man (yeah right!! he's almost 18 and 6' tall!!) has been a big help on the bigger stuff. thanks kid!
around the weather patterns-- which in ohio means 90 one day 34 the next, i've also been able to get mom's bedroom walls patched and sanded down. i'll paint her room while she recovers in the hospital. (well, that's the grand plan anyway!)
all good stuff-- 'cept my back is crying in pain!
we check mom in at 6:45am thursday... surgery begins at 8:45am. my brother is planning on being there with me-- shocked the shit outta me! i'm glad for the support.... i'm hearing too many "this is my last....." comments these past couple of days. thankfully we're doing a ton of laughing, too. it's balanced things for both of us. anyway, brother hasn't joined the pre-op fun in prior surgeries, which makes my head spin around wondering why this one and not the last two?! yes, i've managed to create all kinds of reasons..... i love my head. it doesn't matter really.... i'm simply happy he'll be there. i've had too much alone time with weeds and tree branches, that's all. =)
i'll do my best to update y'all. thanks for the prayers!!
with school out now, my lil man (yeah right!! he's almost 18 and 6' tall!!) has been a big help on the bigger stuff. thanks kid!
around the weather patterns-- which in ohio means 90 one day 34 the next, i've also been able to get mom's bedroom walls patched and sanded down. i'll paint her room while she recovers in the hospital. (well, that's the grand plan anyway!)
all good stuff-- 'cept my back is crying in pain!
we check mom in at 6:45am thursday... surgery begins at 8:45am. my brother is planning on being there with me-- shocked the shit outta me! i'm glad for the support.... i'm hearing too many "this is my last....." comments these past couple of days. thankfully we're doing a ton of laughing, too. it's balanced things for both of us. anyway, brother hasn't joined the pre-op fun in prior surgeries, which makes my head spin around wondering why this one and not the last two?! yes, i've managed to create all kinds of reasons..... i love my head. it doesn't matter really.... i'm simply happy he'll be there. i've had too much alone time with weeds and tree branches, that's all. =)
i'll do my best to update y'all. thanks for the prayers!!
Sunday, May 24, 2009
sunday 5/23
long weekends were once something i enjoyed.... 7 day a week caregiving means no more long weekends. i find myself not caring about that-- which i guess is good!
our little lane is a hidden santuary-- a place where quiet rules during the summer. with the trees and flowers in full bloom it's a piece of heaven on earth-- something a long weekend couldn't even come close to topping as i enjoy it all day and all night long.
youngest sons graduation ceremony was friday night. grad parties have begun and will continue thru the weekend. good thing he's got a ton of friends cuz we aren't able to host one ourselves. i haven't told him his college of choice has upped his scholarship and grant funds-- i hope this will be accepted as his grad gift! i've still got to come up with thousands more to actually get him there.... buy hey-- every little bit counts and the school has answered our prayers with additional assistance from their own purse strings.
as memorial day approaches, i'm planning my annual trip to the family grave sites. i've read several articles this past week about how memorial day has simply become a long weekend for people in the united states. it's made me sad as this day deserves so much more respect. it's not about opening pools and wearing white shoes..... it's honoring those who serve and protect our country! well, i'll do my part and i hope y'all will do yours. i've put a new flag out on mom's pole... dad would be happy to see that.
happy memorial day, folks!
our little lane is a hidden santuary-- a place where quiet rules during the summer. with the trees and flowers in full bloom it's a piece of heaven on earth-- something a long weekend couldn't even come close to topping as i enjoy it all day and all night long.
youngest sons graduation ceremony was friday night. grad parties have begun and will continue thru the weekend. good thing he's got a ton of friends cuz we aren't able to host one ourselves. i haven't told him his college of choice has upped his scholarship and grant funds-- i hope this will be accepted as his grad gift! i've still got to come up with thousands more to actually get him there.... buy hey-- every little bit counts and the school has answered our prayers with additional assistance from their own purse strings.
as memorial day approaches, i'm planning my annual trip to the family grave sites. i've read several articles this past week about how memorial day has simply become a long weekend for people in the united states. it's made me sad as this day deserves so much more respect. it's not about opening pools and wearing white shoes..... it's honoring those who serve and protect our country! well, i'll do my part and i hope y'all will do yours. i've put a new flag out on mom's pole... dad would be happy to see that.
happy memorial day, folks!
Friday, May 15, 2009
friday-- 5/14/09
wow-- two posts in a week! i've decided to post again because i just finished reading a book that i've gotta recommend.
eat, pray, love
by elizabeth gilbert
anyone who's on a journey in their life would find this book one of value. it's not a magic book of answers-- it's simply following a woman on her personal journey. i loved the book because it provided a great balance of thought provoking stuff to ponder and awesome humor.
i've concluded that after this caregiving role is done, i must to go on a journey like the author. my journey will not include the traveling as liz's does.... but it will include doing things and going places that will get my mind where it's supposed to be-- in a good, happy and contented place. that's my brand new long-term goal-- with an estimated start time of 2015. (!!)
my reality (unfortunately) is it's impossible for this journey to begin under the circumstances i live with today. sure, i can read tons of books and articles.... i can pray anytime, anywhere. those are some things for my now..... they'll get me by the day-to-day. this issue of day-to-day is what has caused my soul to dehydrate-- it didn't start with caregiving-- although caregiving did intensify this depletion... it really started back in my 20's. i could go into all that but the cliff notes version is enough. i simply did what i had to do because of a particular obligation i was under. i gave no further thought that i wasn't doing something i really, really wanted to do. i didn't feel any great sense of loss because i was too busy to think otherwise.
here lies the great cliche...... life passes you by. here's my beef..... i let it! i didn't have anyone along the way who pulled me aside and said "hey girl-- what are you doing to fulfill your soul?!" or, "hey girl-- you're so busy doing what you gotta do that you're forgetting about doing stuff you wanna do!" i have such a sense of duty! further-- i was always complimented on that sense of duty-- which i suspect gave me satisfaction and encouragement to simply continue being dutiful. did i mention i'm co-dependent? i learned that in my late 20's and it's been proved many times since. yet-- i've really done nothing about it other than to acknowledge this notion. my head will remind me but my actions do nothing about it. days come in-- days go out.
soooo, now i have a new goal that will start in approximately 5-10 years from now. i will start planning for it-- now. sure hope my soul can hang on for the duration..... it will-- i've proven it can be done. there will be a price to pay-- i know this too and will prepare. i'm in gods hands-- that's my start!
read the book, friends. lemme know what you think.
eat, pray, love
by elizabeth gilbert
anyone who's on a journey in their life would find this book one of value. it's not a magic book of answers-- it's simply following a woman on her personal journey. i loved the book because it provided a great balance of thought provoking stuff to ponder and awesome humor.
i've concluded that after this caregiving role is done, i must to go on a journey like the author. my journey will not include the traveling as liz's does.... but it will include doing things and going places that will get my mind where it's supposed to be-- in a good, happy and contented place. that's my brand new long-term goal-- with an estimated start time of 2015. (!!)
my reality (unfortunately) is it's impossible for this journey to begin under the circumstances i live with today. sure, i can read tons of books and articles.... i can pray anytime, anywhere. those are some things for my now..... they'll get me by the day-to-day. this issue of day-to-day is what has caused my soul to dehydrate-- it didn't start with caregiving-- although caregiving did intensify this depletion... it really started back in my 20's. i could go into all that but the cliff notes version is enough. i simply did what i had to do because of a particular obligation i was under. i gave no further thought that i wasn't doing something i really, really wanted to do. i didn't feel any great sense of loss because i was too busy to think otherwise.
here lies the great cliche...... life passes you by. here's my beef..... i let it! i didn't have anyone along the way who pulled me aside and said "hey girl-- what are you doing to fulfill your soul?!" or, "hey girl-- you're so busy doing what you gotta do that you're forgetting about doing stuff you wanna do!" i have such a sense of duty! further-- i was always complimented on that sense of duty-- which i suspect gave me satisfaction and encouragement to simply continue being dutiful. did i mention i'm co-dependent? i learned that in my late 20's and it's been proved many times since. yet-- i've really done nothing about it other than to acknowledge this notion. my head will remind me but my actions do nothing about it. days come in-- days go out.
soooo, now i have a new goal that will start in approximately 5-10 years from now. i will start planning for it-- now. sure hope my soul can hang on for the duration..... it will-- i've proven it can be done. there will be a price to pay-- i know this too and will prepare. i'm in gods hands-- that's my start!
read the book, friends. lemme know what you think.
Thursday, May 14, 2009
5/14/09
i haven't decided which is more difficult.... caregiving for a person with alzheimer's or caregiving for a physically challenged person with full mental ability and has an upcoming surgery for cancer-- with an unknown cancer whatever after surgery.
a couple nights ago i woke up with an answer to some thoughts that had been swirling around in my head for a couple of weeks..... for whatever reason, it was 2:34am when those unknowns became understood. DOH!! i laid there feeling like an idiot for not figuring it out sooner.
the realization was that my mother has been preparing herself for death. she wasn't just retiring. she wasn't just getting her files put in the right folders. she wasn't just surrounding herself with things she liked being around.
the poor woman is scared shitless!
for this past month, i've been helping her with all those things that needed to be done and i didn't process what was really happening. she's always been a very organized person. she's always been very much in charge of her stuff. her patience can be stretched as anyone's can..... but she's never been quite so.... well..... emotionally urgent about stuff.
sure, i knew her cancer diagnosis has been on her mind.... how could it not be? it's like an elephant in the room. we acknowledge it when we have to but otherwise, we leave it alone. mom's never been one to have a sit down conversation about personal things unless she deems it necessary to do. she's always chosen what she wants to share and when. because i know this, i don't take offense (let's just say the apple doesn't fall far from the tree on that one!).
the kicker for me as her caregiver is this..... all sorts things have been happening that i should have seen immediately as stressers. there's no "normal" for her right now. yet she's been pretty normal to me..... outside of those little more than normal "urgent" stressers... and silly ole me took a month to understand it!
so today, i'll do some more thinking. today, i'll do some more planning. it's strategy this life thing.... this caregiving for mom thing. with dad i needed some strategy at the beginning.... but true strategy wasn't needed from the middle to the end. he was mentally lost. it had become more caring for rather than caregiving.
this is seriously difficult stuff... only different from my other story of seriously difficult stuff. i've giving myself an honorary PhD when this is over.
a couple nights ago i woke up with an answer to some thoughts that had been swirling around in my head for a couple of weeks..... for whatever reason, it was 2:34am when those unknowns became understood. DOH!! i laid there feeling like an idiot for not figuring it out sooner.
the realization was that my mother has been preparing herself for death. she wasn't just retiring. she wasn't just getting her files put in the right folders. she wasn't just surrounding herself with things she liked being around.
the poor woman is scared shitless!
for this past month, i've been helping her with all those things that needed to be done and i didn't process what was really happening. she's always been a very organized person. she's always been very much in charge of her stuff. her patience can be stretched as anyone's can..... but she's never been quite so.... well..... emotionally urgent about stuff.
sure, i knew her cancer diagnosis has been on her mind.... how could it not be? it's like an elephant in the room. we acknowledge it when we have to but otherwise, we leave it alone. mom's never been one to have a sit down conversation about personal things unless she deems it necessary to do. she's always chosen what she wants to share and when. because i know this, i don't take offense (let's just say the apple doesn't fall far from the tree on that one!).
the kicker for me as her caregiver is this..... all sorts things have been happening that i should have seen immediately as stressers. there's no "normal" for her right now. yet she's been pretty normal to me..... outside of those little more than normal "urgent" stressers... and silly ole me took a month to understand it!
so today, i'll do some more thinking. today, i'll do some more planning. it's strategy this life thing.... this caregiving for mom thing. with dad i needed some strategy at the beginning.... but true strategy wasn't needed from the middle to the end. he was mentally lost. it had become more caring for rather than caregiving.
this is seriously difficult stuff... only different from my other story of seriously difficult stuff. i've giving myself an honorary PhD when this is over.
Sunday, May 10, 2009
mother's day
happy day to all you moms of kids n' animals (yes, they count)!
having 3 of the greatest kids on earth has made me happy since 1987. it doesn't take a day such as today for me to be grateful for them. the blessings they bestowed on me are so vast they are indescribeable. did i spell that right? oh well i don't care, you get it.
my mom has has a good mother's day.... a visit from bro and sister-in-law... and my daughter stopped by too, so her day has filled up well-- and now she's off with her once a month eating buddy. she's having a good day.
mom's appetite has been minimal and it's a worry but not a big concern-- yet. i know the problem is mental and that counts big time on the life-balances scale. she's always been a very light eater, now it's simply lighter than light. she's getting full nutrition thanks to her carnation (ensure type) drink. i hope this outing of hers brings enjoyment and a ton a calories!
we've gotten her office boxes completely unpacked and everything is now in a place-- good. the only thing left on our list of to-do's is get a wireless printer for her. bro is working on that already and with any luck, i'll pick it up and we'll have it in place this week. it's a major craigslist find. thankfully it comes from a business, so i have less worry about meeting up with someone i don't know.
youngest son's prom was last night-- got him back home this morning with no surpises or issues. yay! my heart was at peace all night as the kids got his head on straight..... but i'm also a realist and expect the unexpected..... seeing his smiling face back home this morning certainly brought relief that nothing unexpected happened!
til next time. blessings to you all.
having 3 of the greatest kids on earth has made me happy since 1987. it doesn't take a day such as today for me to be grateful for them. the blessings they bestowed on me are so vast they are indescribeable. did i spell that right? oh well i don't care, you get it.
my mom has has a good mother's day.... a visit from bro and sister-in-law... and my daughter stopped by too, so her day has filled up well-- and now she's off with her once a month eating buddy. she's having a good day.
mom's appetite has been minimal and it's a worry but not a big concern-- yet. i know the problem is mental and that counts big time on the life-balances scale. she's always been a very light eater, now it's simply lighter than light. she's getting full nutrition thanks to her carnation (ensure type) drink. i hope this outing of hers brings enjoyment and a ton a calories!
we've gotten her office boxes completely unpacked and everything is now in a place-- good. the only thing left on our list of to-do's is get a wireless printer for her. bro is working on that already and with any luck, i'll pick it up and we'll have it in place this week. it's a major craigslist find. thankfully it comes from a business, so i have less worry about meeting up with someone i don't know.
youngest son's prom was last night-- got him back home this morning with no surpises or issues. yay! my heart was at peace all night as the kids got his head on straight..... but i'm also a realist and expect the unexpected..... seeing his smiling face back home this morning certainly brought relief that nothing unexpected happened!
til next time. blessings to you all.
Thursday, April 30, 2009
end of april
well.... another month gone! i suspect may will come and go as quickly as my graduates are quickening their pace and their sibling is planning a move into a new apartment. it's a fun time for this mom as i watch and listen to their plans. lil man is negotiating financial arrangements with his college of choice-- oldest daughter is keeping several balls in the air with potential employers-- oldest son is planning his future although i suspect he's rather unaware of it. this is good stuff for ole mom to see.
the testing my mom went thru yesterday went without a hitch. it was one long-ass day but she made it thru just fine. for me, (and yes, certainly my mom) now comes the hard part.... waiting for results and the docs determination of what's next. we know there will be surgery the first week of june. we know it'll be an extensive surgery-- 7-8 hours minimum. yesterday's testing will tell us if a couple hours will be added to that.
we already know she'll be in the hospital a minimum of a week and she'll have a feeding tube. a tracheostomy may be needed... if. beyond that is unknown today.
after talking with my brother last night, it became clearer to me that we're in for a ride. i had all the information in my head but hadn't put it all together until i started explaining everything i knew.
there's a lot about our mother that neither of us can predict. we've done a lot of guessing as to how she'll deal with things but the surprises come often-- caregiving for mom is very much like playing a tennis match. i've done a lot of thinking about this over the last 24 hours..... the cliche that you really never know someone keeps coming out on top.
with that said, i can tell you that i'm totally impressed with mom right now. totally! there were years my brother and i were told that she just "wanted off the planet." she was so angry and unhappy.... she wanted her life on earth to be done. with this new challenge, she's dealing and wants to do what she's being told must be done. gotta hand it to her.... if i was asked a month ago whether or not she'd go thru with the surgery, etc., i would have told you no, she would not. both her mother and her sister "hid" their cancers from the family. it was too late by the time anyone figured it out-- they secretly lived with it until their lives ended.
i could write forever on the pros and cons of my gramma and aunts decisions.... i won't do that. but i will tell you that i get both sides. i miss them. their family misses them. but we were left with a lot of unanswered questions. let's hope no one's gonna be missing my mom for quite a long time.... and when that time comes, we'll all know she did the best she could do. every decision counts whether we agree or disagree personally. when it comes down to dying, it should be on our own terms.... god willing.
the testing my mom went thru yesterday went without a hitch. it was one long-ass day but she made it thru just fine. for me, (and yes, certainly my mom) now comes the hard part.... waiting for results and the docs determination of what's next. we know there will be surgery the first week of june. we know it'll be an extensive surgery-- 7-8 hours minimum. yesterday's testing will tell us if a couple hours will be added to that.
we already know she'll be in the hospital a minimum of a week and she'll have a feeding tube. a tracheostomy may be needed... if. beyond that is unknown today.
after talking with my brother last night, it became clearer to me that we're in for a ride. i had all the information in my head but hadn't put it all together until i started explaining everything i knew.
there's a lot about our mother that neither of us can predict. we've done a lot of guessing as to how she'll deal with things but the surprises come often-- caregiving for mom is very much like playing a tennis match. i've done a lot of thinking about this over the last 24 hours..... the cliche that you really never know someone keeps coming out on top.
with that said, i can tell you that i'm totally impressed with mom right now. totally! there were years my brother and i were told that she just "wanted off the planet." she was so angry and unhappy.... she wanted her life on earth to be done. with this new challenge, she's dealing and wants to do what she's being told must be done. gotta hand it to her.... if i was asked a month ago whether or not she'd go thru with the surgery, etc., i would have told you no, she would not. both her mother and her sister "hid" their cancers from the family. it was too late by the time anyone figured it out-- they secretly lived with it until their lives ended.
i could write forever on the pros and cons of my gramma and aunts decisions.... i won't do that. but i will tell you that i get both sides. i miss them. their family misses them. but we were left with a lot of unanswered questions. let's hope no one's gonna be missing my mom for quite a long time.... and when that time comes, we'll all know she did the best she could do. every decision counts whether we agree or disagree personally. when it comes down to dying, it should be on our own terms.... god willing.
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