On this day three years ago, Mom was admitted to the hospital. By the end of the day she would be diagnosed with a large mass on the left side of her brain. It would be another month before she left the hospital for rehab, and many months before she would return to her own home. 23 months later she would take her last breath and leave home for the last time.
Three years later - the grief and loneliness is still a crushing pain, like this all happened just yesterday.
Miss you a ton, Mom.
Tuesday, February 10
Thursday, July 24
Eulogy
I wrote the following words for Mom and shared them with our friends and family at her funeral on December 23. Cleaning up some files this evening, I came across the eulogy and realized that, in the post-funeral haze, I never posted it to Mom's blog.
I'm a slow writer. I enjoy it, but I ponder every word and write dozens of drafts. Email is torture; it takes me forever to craft responses. Of course, Mom loved good writing of all kinds and always encouraged me to write; she was my biggest fan. So I decided that writing a eulogy was my responsibility and the best way to honor her memory.
I thought about what I would write for months before she passed away, but I couldn't bring myself to put a single word to paper until it was time. A few months after Mom was first diagnosed, I was struggling with nightmares and fear of what lay ahead for our family, so I went to see a counselor. Not a very good one, as it turns out, but she said one thing that really stuck with me. "Don't go there, until you're there." Meaning, don't imagine the thing you're afraid of until it's really standing there in front of you. Torturing yourself mentally won't prevent what you fear from coming true.
So I tried hard not to think about it, and I didn't write anything, but then we were there. We had so many details to pull together very fast because it was almost Christmas, and we didn't want our friends to have to choose between the funeral and their family time. So we burned the midnight oil and pulled everything together in two days: the funeral home, the music, her outfit, the obituary, and the slideshow complete with photos from every part of her life.
Then the eulogy. When I couldn't put it off any longer, and the morning of the funeral was upon us, I sat down and wrote it all in one sitting. Like Mom taught me, I built an outline first, and then just two drafts and I was done. Thankfully I saved many emails from Mom over the years; it helped to go back and read them again, hearing her voice through her words. I like to think she was collaborating with me. Reading these words now, I wish I could do a few more drafts. This version is okay, though. I think she would have liked it.
--------
Hi everyone. I’m Sara, or “Daughter #3” as my mom sometimes called me.
First, a bit of business. Our family is requesting that anyone who would like to honor our mother consider a donation to the new Judy Worrell Memorial Fund at the American Airlines Credit Union. It will be used to establish a scholarship for graduates of North Richland Middle School and Richland High School. Information on how to contribute is on the program.
Also, we would like to thank all of you who showed up in force when Mom was first diagnosed and who supported her throughout the last 22 months. Very special thanks to the staff of Interim Hospice, especially her physical therapist Marilee Luna and nurse Ileine O’Connell. Marilee and Ileine began caring for Mom in the summer of 2012, and they gave exactly what our family needed: good medical care, a warm hug, and a listening ear. They never gave up.
You all know that Mom was very sick for the final 22 months of her life. She surpassed the average life expectancy by many months - her sheer willpower held the end at bay for a long time. So I’ve had a lot of time on planes traveling between my home in California and my home here in Texas, and many times I found myself teary on the flight thinking about all that I will miss about Mom. Things that I wish I’d done while she was still with us to make her proud, like get a graduate degree as she did.
That said, I had 39 years with Mom, and she seemed to think I turned out pretty good. So when I stopped to think about what I did learn from Mom in all that time, I realized this award-winning teacher in the classroom passed on the right lessons to me all along the way, too.
Today I would like to share a few thoughts with you all about the life lesson plan Mom taught to me.
Life lesson #1: Love is action.
Mom had a full-time job as a teacher when I was growing up, and even so she still had a home-cooked meal at the family dinner table every night. Busy with three daughters, a husband, and even a cat, we had a lot of laundry, but our house was still decorated beautifully for every holiday, and the dining table was full of tins of homemade cookies and fudge.
Growing up, I thought everyone’s home was like that. It wasn’t until I became an adult and parent that I realized how hard that must have been. How in the world did she and Daddy do all of that and make it look so easy? I don’t remember her complaining about a long commute like I do (although she did complain about grading papers), and I don’t remember takeout dinners very often. I do remember Mom woke early and often fell asleep on the couch grading those papers. She was the last to the dinner table because she made sure everyone else had what they wanted first. She was full of energy and optimism, and she had high standards for how our family home would feel.
This is from an email she sent me a few years ago:
Life lesson #2: A full life has equal parts work and play.
There’s no doubt that Mom worked very hard as a teacher, but others here will tell those stories. Outside the classroom, she worked and played just as hard. When we lived in New Mexico, Mom had a large garden in our backyard, and she loved working in it. She once gave me a patch of dirt and said I could grow whatever I wanted, and I chose green beans. I wanted them to be the BEST green beans, so I watered them every day and let them grow and grow…they were huge. Mom knew they were past their prime, but she still helped me snap off the ends and cheerfully ate them anyway – strings like rope and all.
After all three girls finally left home, I think Mom and Daddy initially felt some of that empty nest syndrome. They seemed to get over it fairly quickly, and they enjoyed several trips to Napa Valley and told great stories about wine dinners and the people they met. After 50 years together, they still had more fun with each other than with anyone else.
On my 30th birthday, Mom sent me this email:
Lesson #3: Make a difference in the life of a child.
Judging from all the emails, cards and artwork we received from Mom’s students, she made a difference in many, many lives. Of course, the biggest impact was in the lives of her daughters and grandchildren. It was pretty amazing to watch Mom transform into Grandma when her first grandbaby, Caroline, was born. She took on this new job with gusto. Alicia told me when Mom first heard that she was going to be a grandma, her response was, “Hot dog, hot dog, hot dog!”
Her enthusiasm for grandparenting had no equal, and she was happy to do whatever she could to help us. She taught her granddaughters to read in “Grandma School”, and her house is full of children’s books. I mean, we have more children’s books than most small town libraries.
When my son Macklin was born, she came to Chicago and spent one of his first weeks with us. It was the first one-on-one time I had with Mom in a long time, and she was the one to convince me motherhood was not an insurmountable challenge. She kept repeating, “You can do this.” It was a wonderful week, and I cried my eyes out when she left. She did, too. (A family with seven girls – we’re a weepy bunch.)
Later she sent me another email:
Undoubtedly everyone in this room has felt the impact of the last two years. Perhaps it changed your view of the world and of your place in it. It certainly did for me. I can say without reservation that I am a better wife, mother, sister, and daughter today than I was before, because of what Mom taught me throughout life, and especially in the last two years. She was the epitome of strength, determination, and love even on her worst days.
To close, I would like to ask everyone to use this experience to remember Judy’s lessons, her passion for learning and reaching high, and to honor her motto:
Start now! Stay Focused! Finish strong!
I love you, Mom.
I'm a slow writer. I enjoy it, but I ponder every word and write dozens of drafts. Email is torture; it takes me forever to craft responses. Of course, Mom loved good writing of all kinds and always encouraged me to write; she was my biggest fan. So I decided that writing a eulogy was my responsibility and the best way to honor her memory.
I thought about what I would write for months before she passed away, but I couldn't bring myself to put a single word to paper until it was time. A few months after Mom was first diagnosed, I was struggling with nightmares and fear of what lay ahead for our family, so I went to see a counselor. Not a very good one, as it turns out, but she said one thing that really stuck with me. "Don't go there, until you're there." Meaning, don't imagine the thing you're afraid of until it's really standing there in front of you. Torturing yourself mentally won't prevent what you fear from coming true.
So I tried hard not to think about it, and I didn't write anything, but then we were there. We had so many details to pull together very fast because it was almost Christmas, and we didn't want our friends to have to choose between the funeral and their family time. So we burned the midnight oil and pulled everything together in two days: the funeral home, the music, her outfit, the obituary, and the slideshow complete with photos from every part of her life.
Then the eulogy. When I couldn't put it off any longer, and the morning of the funeral was upon us, I sat down and wrote it all in one sitting. Like Mom taught me, I built an outline first, and then just two drafts and I was done. Thankfully I saved many emails from Mom over the years; it helped to go back and read them again, hearing her voice through her words. I like to think she was collaborating with me. Reading these words now, I wish I could do a few more drafts. This version is okay, though. I think she would have liked it.
--------
Words for Mom
First, a bit of business. Our family is requesting that anyone who would like to honor our mother consider a donation to the new Judy Worrell Memorial Fund at the American Airlines Credit Union. It will be used to establish a scholarship for graduates of North Richland Middle School and Richland High School. Information on how to contribute is on the program.
Also, we would like to thank all of you who showed up in force when Mom was first diagnosed and who supported her throughout the last 22 months. Very special thanks to the staff of Interim Hospice, especially her physical therapist Marilee Luna and nurse Ileine O’Connell. Marilee and Ileine began caring for Mom in the summer of 2012, and they gave exactly what our family needed: good medical care, a warm hug, and a listening ear. They never gave up.
You all know that Mom was very sick for the final 22 months of her life. She surpassed the average life expectancy by many months - her sheer willpower held the end at bay for a long time. So I’ve had a lot of time on planes traveling between my home in California and my home here in Texas, and many times I found myself teary on the flight thinking about all that I will miss about Mom. Things that I wish I’d done while she was still with us to make her proud, like get a graduate degree as she did.
That said, I had 39 years with Mom, and she seemed to think I turned out pretty good. So when I stopped to think about what I did learn from Mom in all that time, I realized this award-winning teacher in the classroom passed on the right lessons to me all along the way, too.
Today I would like to share a few thoughts with you all about the life lesson plan Mom taught to me.
Life lesson #1: Love is action.
Mom had a full-time job as a teacher when I was growing up, and even so she still had a home-cooked meal at the family dinner table every night. Busy with three daughters, a husband, and even a cat, we had a lot of laundry, but our house was still decorated beautifully for every holiday, and the dining table was full of tins of homemade cookies and fudge.
Growing up, I thought everyone’s home was like that. It wasn’t until I became an adult and parent that I realized how hard that must have been. How in the world did she and Daddy do all of that and make it look so easy? I don’t remember her complaining about a long commute like I do (although she did complain about grading papers), and I don’t remember takeout dinners very often. I do remember Mom woke early and often fell asleep on the couch grading those papers. She was the last to the dinner table because she made sure everyone else had what they wanted first. She was full of energy and optimism, and she had high standards for how our family home would feel.
This is from an email she sent me a few years ago:
“...Since your dad won't be here this weekend, we may have to eat out. Won't it be nice to have a "girls' day out"! We haven't had one of those in so long! You do know that Caroline and Catherine know what a "girls' day out" is don't you? It means Grandma buys them something and we have a good time. ... We might even invite Scott. Poor fella, we don't want him to be lonely and we might need someone to carry our packages.”Mom’s love for us was generous, selfless, and all action.
Life lesson #2: A full life has equal parts work and play.
There’s no doubt that Mom worked very hard as a teacher, but others here will tell those stories. Outside the classroom, she worked and played just as hard. When we lived in New Mexico, Mom had a large garden in our backyard, and she loved working in it. She once gave me a patch of dirt and said I could grow whatever I wanted, and I chose green beans. I wanted them to be the BEST green beans, so I watered them every day and let them grow and grow…they were huge. Mom knew they were past their prime, but she still helped me snap off the ends and cheerfully ate them anyway – strings like rope and all.
After all three girls finally left home, I think Mom and Daddy initially felt some of that empty nest syndrome. They seemed to get over it fairly quickly, and they enjoyed several trips to Napa Valley and told great stories about wine dinners and the people they met. After 50 years together, they still had more fun with each other than with anyone else.
On my 30th birthday, Mom sent me this email:
“We want to wish you a happy birthday! Seems like only yesterday that we brought you home from the hospital! What are you doing for your birthday? Going out for some dinner somewhere? We are having a tasty glass of Schramsberg Cremant in your honor right now! Thanks for having a birthday!”Mom knew how to have fun.
Lesson #3: Make a difference in the life of a child.
Judging from all the emails, cards and artwork we received from Mom’s students, she made a difference in many, many lives. Of course, the biggest impact was in the lives of her daughters and grandchildren. It was pretty amazing to watch Mom transform into Grandma when her first grandbaby, Caroline, was born. She took on this new job with gusto. Alicia told me when Mom first heard that she was going to be a grandma, her response was, “Hot dog, hot dog, hot dog!”
Her enthusiasm for grandparenting had no equal, and she was happy to do whatever she could to help us. She taught her granddaughters to read in “Grandma School”, and her house is full of children’s books. I mean, we have more children’s books than most small town libraries.
When my son Macklin was born, she came to Chicago and spent one of his first weeks with us. It was the first one-on-one time I had with Mom in a long time, and she was the one to convince me motherhood was not an insurmountable challenge. She kept repeating, “You can do this.” It was a wonderful week, and I cried my eyes out when she left. She did, too. (A family with seven girls – we’re a weepy bunch.)
Later she sent me another email:
“I really enjoyed myself—just sitting there visiting with you and Charles and Macklin. I especially enjoyed loving on Macklin. He is a wonderful baby, Honey, and you and Charles are going to love having him in your life. Pretty soon you will wonder what you did with your time before he came into your life. Children make our hearts grow; mine surely has. I love that little boy like he was my own.”Take the time to make a difference in the life of a child. There’s no better investment in our future than to invest in theirs.
Undoubtedly everyone in this room has felt the impact of the last two years. Perhaps it changed your view of the world and of your place in it. It certainly did for me. I can say without reservation that I am a better wife, mother, sister, and daughter today than I was before, because of what Mom taught me throughout life, and especially in the last two years. She was the epitome of strength, determination, and love even on her worst days.
To close, I would like to ask everyone to use this experience to remember Judy’s lessons, her passion for learning and reaching high, and to honor her motto:
Start now! Stay Focused! Finish strong!
I love you, Mom.
Monday, December 23
Obituary
Judy Carol Whitley Worrell passed away at the age of 69 on Thursday, December 19, after a courageous 22-month journey through cancer. Her loving spirit is carried on by her daughters, sons-in-law, grandchildren, her parents and brother, and especially by her adored and adoring husband, Kenneth Worrell. Inseparable from the moment they met in 1962, Judy and Ken spent 49 years of marriage in service to their country throughout their long careers in public education and the United States Air Force, respectively.
A graduate of Benvenue High School and UNC-CH, Judy started her award-winning career in teaching in Selma, Alabama, and followed Ken’s military posts in Nevada, California, New Mexico, Virginia, and Texas. During Ken’s time in Vietnam, Judy cared for her young daughters in Rocky Mount and kept him entertained with news from home through loving letters in her immaculate cursive. A much-beloved English teacher for almost four decades, Judy had an unmatched gift for words, both written and spoken in her soft North Carolina accent.
We were blessed to learn many lessons from Judy, our favorite teacher, over her 69 years:
A service to honor Judy was held at Bluebonnet Hills Funeral Home in Colleyville, Texas, at 3 PM on Monday, December 23. In lieu of flowers, memorial donations may be made to "The Judy Worrell Memorial Fund" at the American Airlines Credit Union, which will be used to establish a scholarship fund for graduates of North Richland Middle School where Judy taught for over 20 years.
A graduate of Benvenue High School and UNC-CH, Judy started her award-winning career in teaching in Selma, Alabama, and followed Ken’s military posts in Nevada, California, New Mexico, Virginia, and Texas. During Ken’s time in Vietnam, Judy cared for her young daughters in Rocky Mount and kept him entertained with news from home through loving letters in her immaculate cursive. A much-beloved English teacher for almost four decades, Judy had an unmatched gift for words, both written and spoken in her soft North Carolina accent.
We were blessed to learn many lessons from Judy, our favorite teacher, over her 69 years:
Buy American whenever you can.Judy is survived by her beloved husband, Kenneth; their daughters Alicia (husband Scott Probasco, and daughters Caroline, Catherine and Mary Claire), Jennifer (partner Peter Mack), and Sara (husband Charles Berg, and son Macklin); her parents, Paul David and Bertha Mae Whitley; her brother, Paul R. Whitley; sister-in-law Christine Shirley Anderson; and many family members and friends in North Carolina and Texas. Judy was welcomed into Heaven with open arms by her sweet in-laws, Thurston and Gertrude Worrell.
Rides are best in a Cadillac with deep leather seats and piano music in the CD player.
A proper breakfast includes a grande skinny Starbucks vanilla latte.
Naps are best when taken in your comfy burgundy leather chair in front of the television.
It’s fun to chat with strangers, whether you are in line at the grocery store, on the subway in New York City, or enjoying a nice glass of zinfandel at a picnic table in Napa Valley. New friends are everywhere, and old friends are the best.
It’s easy to make a huge difference in the life of child: Read to them, cook their favorite foods, listen to their every story, and fill their life with music. Throw your arms open wide to wrap them in a hug every time a child walks in the room. Hold them to high standards, and know they will rise to the occasion. Love them when they fall and help them get back up again.
Take time to notice the sunset and smell the roses.
A service to honor Judy was held at Bluebonnet Hills Funeral Home in Colleyville, Texas, at 3 PM on Monday, December 23. In lieu of flowers, memorial donations may be made to "The Judy Worrell Memorial Fund" at the American Airlines Credit Union, which will be used to establish a scholarship fund for graduates of North Richland Middle School where Judy taught for over 20 years.
Friday, December 20
Service details
The visitation to honor Judy Worrell will be this Sunday, December 22, from 2 to 4 PM at
Bluebonnet Hills in Colleyville.
The service will be at Bluebonnet Hills on Monday, December 23, at 3 PM.
A private family ceremony for interment at the Dallas-Fort Worth National Cemetery will be held at a later date.
The family is requesting no flowers, please. Instead, we created a scholarship fund in Mom's name, which would make her very happy. For those who wish to donate and honor Mom, the American Airlines Credit Union is accepting memorial donations to "The Judy Worrell Memorial Fund." The credit union can be reached at (800) 533-0035 or at their flagship location:
AA Credit Union Flagship Branch
4151 Amon Carter Blvd.
Fort Worth, TX
76155
We will arrange an online form for donations as well.
The service will be at Bluebonnet Hills on Monday, December 23, at 3 PM.
A private family ceremony for interment at the Dallas-Fort Worth National Cemetery will be held at a later date.
The family is requesting no flowers, please. Instead, we created a scholarship fund in Mom's name, which would make her very happy. For those who wish to donate and honor Mom, the American Airlines Credit Union is accepting memorial donations to "The Judy Worrell Memorial Fund." The credit union can be reached at (800) 533-0035 or at their flagship location:
AA Credit Union Flagship Branch
4151 Amon Carter Blvd.
Fort Worth, TX
76155
We will arrange an online form for donations as well.
Home at last
Judy Carol Whitley Worrell
September 20, 1944 - December 19, 2013
Our mom, Judy Worrell,
passed away last night at 5 pm. God and all his angels lit the heavens
and welcomed her home with an amazing party, starting with this sunset
that darkened to a star-filled sky with a full moon and Jupiter brightly
shining. We're relieved she's at peace. Although our hearts are broken,
we're grateful to all of you who followed her journey here on the blog. It's been a source of comfort and strength to all of us. Your comments, emails, posts to Facebook, calls and visits have kept us going.
In lieu of flowers, we're requesting that those who wish to honor Mom consider donating to a memorial fund in her name. We will be endowing a scholarship for graduates of Mom's beloved North Richland Middle School and Richland High School.
Details on the scholarship fund, as well as on the funeral service, will be posted later today or tomorrow.
Love to you all.
Monday, December 16
Forks
Planning for the holidays in a hospice setting is not fun. There's not a lot of joy to the world, and we see the silent night approaching. It's an everyday schedule we have: nibbling at very small meals, struggling to get down too many pills, watching the birds when they come, and the television from sun up to sun down. Day after day.
The schedule only changes to take a step down, like finding a new problem. Mom's skin on her right arm has somehow peeled off to the extent that even putting a bandage on it is dangerous, because peeling off baby-soft gauze takes with it another layer of skin. Her left arm and her face are swollen at various stages through the day. Her breathing is shallow and labored, and she when she feels the need to cough, the cough lasts for hours and hours, unproductive due to her lack of energy.
It would be easy to sink into a inconsolable state, watching this decline. And we all get there at one point or another. Some of us get mad at little, and very big, things. Things where we believe everyone should know better than to _____ (whatever) - but everyone isn't us. Some of us are caught unaware by a beautiful Christmas hymn, and then can't breathe the sadness is so deep. So we sob, hiding in the Wesley Sunday School class until an angel named Nadine comes in, looking for her coat, and ends up holding us until the shudders die away and we're left an empty shell. With yet another day ahead of being a parent to children who deserve a better parent, and a parent to a parent who doesn't deserve any of this horrible disease.
We could do that. Or, we could clean out the dishwasher, and talk through a routine task, and learn this:
You know, we have had that fork for a really long time. It's the first flatwear pattern I remember us having.
Oh, it's not the first. We have some left from when we first got married. It's in here somewhere (digging), yep here it is! I wonder where all the rest went.
Probably in lunchboxes over the last 49 years. Sprinkled in school cafeterias coast to coast.
Yeah probably.
That pattern, that's what we bought in 1969 at Nellis Air Force Base. You don't even remember that.
Of course I do. Not buying the silverware, but I remember not being allowed to touch slot machines in the grocery store.
That spoon - the grapefruit spoon? It's from Grandma Worrell (dad's mother).
No, it's not, but she had grapefruit spoons in her drawer too.
And, she did love to eat grapefruit.
That set? That's what I bought from the Pottery Barn in Williamsburg, Virginia, before I moved to Turkey.
No dad, it's not the Pottery Barn. It's just "The Williamsburg Pottery" and there's a big difference. :)
After that set, we got this new set that your mother really liked. It's a good thing we have all these forks because we sure do use a lot of them.
If I had remembered to turn the dishwasher on the past 3 days, we'd have plenty of clean forks instead of a load of dirty ones.
You know your mother's silver set? She saved her money from when she was a school bus driver in high school to buy that silver.
(I don't think I ever knew that.)
I am thankful for dishwashers and too many forks. For the many wine glasses I've broken over the past several months, for the meals shared, and for the tears shed with my dad. For the friends that reach out, for the Christmas cards that are coming in and bringing memories and bits of smiles to Dad's face. For my angel Nadine who helped me breathe.
For another day.
You know your mother's silver set? She saved her money from when she was a school bus driver in high school to buy that silver.
(I don't think I ever knew that.)
I am thankful for dishwashers and too many forks. For the many wine glasses I've broken over the past several months, for the meals shared, and for the tears shed with my dad. For the friends that reach out, for the Christmas cards that are coming in and bringing memories and bits of smiles to Dad's face. For my angel Nadine who helped me breathe.
For another day.
Friday, November 29
Giving Thanks
This was the first year in my life no one was up before 7am basting the turkey and no one peeled potatoes. No one bought a bag of Pepperidge Farms stuffing mix. Not to let everything go, I took a few hours in the kitchen with Catherine and Mary Claire making pies and sides. Fun memories at a slower pace.
We decided this year that our time was better spent with Mom rather than scheduling oven timer slots, and heating up a gourmet take-out meal was going to be okay. Our goal was to have dinner all heated up by halftime of the Cowboys game, and everyone agreed the turkey breast was as good as any whole bird we'd ever cooked. It was an emotional choice to buy rather than make, but once done it was as if a load had been lifted and we were given the gift of time.
Time is the most important thing. Mom has had time with her family this week to watch the Wizard of Oz, the Grinch, and the Garth Brooks special with her little ones...and it's wonderful to see how she responds to the music we all know so well. Music brings movement to mom's room, whether it's soothing and brings forth a gentle hand wave, or a foot tapping beat of Don McLean's American Pie. Mom hums to all songs, and the music takes us all to easier days for just a few minutes.
Everyone in our family knows American Pie. An unexpected blessing today was when Dad pulled up the song on his phone, and we all sang to it during a commercial break for Garth. It was a wonderful few minutes.
We're thankful to have these minutes. They are rarer these days, but they're still there.
We decided this year that our time was better spent with Mom rather than scheduling oven timer slots, and heating up a gourmet take-out meal was going to be okay. Our goal was to have dinner all heated up by halftime of the Cowboys game, and everyone agreed the turkey breast was as good as any whole bird we'd ever cooked. It was an emotional choice to buy rather than make, but once done it was as if a load had been lifted and we were given the gift of time.
Time is the most important thing. Mom has had time with her family this week to watch the Wizard of Oz, the Grinch, and the Garth Brooks special with her little ones...and it's wonderful to see how she responds to the music we all know so well. Music brings movement to mom's room, whether it's soothing and brings forth a gentle hand wave, or a foot tapping beat of Don McLean's American Pie. Mom hums to all songs, and the music takes us all to easier days for just a few minutes.
Everyone in our family knows American Pie. An unexpected blessing today was when Dad pulled up the song on his phone, and we all sang to it during a commercial break for Garth. It was a wonderful few minutes.
We're thankful to have these minutes. They are rarer these days, but they're still there.
Tuesday, November 19
A few thoughts as the weather turns cold
In this short Life that only lasts an hourOne of the many amazing things about being a parent is watching your child grow. The growing itself is imperceptible; you can see your child every day, watch him play for hours, and you will not see him suddenly stand a half inch taller or flex his toes on a now-longer foot. The changes in a growing child happen slowly, almost behind the scenes. They happen over weeks and months, and they happen at night while you sleep. You notice the changes when your child's too-long pants are now too short, or he stops asking you to turn on the faucet because now he can reach it himself. These little changes are the guideposts you see along your child's journey from an infant to an adult. They're miraculous, all of them, and wonderful to see. I consider myself a pragmatic person in most things, but in parenting, I am a wholehearted sentimentalist. I get teary with both pride and sadness at these changes in my growing child.
How much - how little - is within our power
Emily Dickinson
Now I'm facing the death of a parent, and not just any parent, but my mother. (It's not only my loss, of course; we're all losing her. Still, the intense fear and grief make me feel alone.) Hers was the first voice I ever heard, and I can recall her laugh in an instant despite having heard it so little in well over a year. I moved away in 1999 and laughed when Mom said I would probably never come home. She was right, of course, as she was about most things. Sometimes I missed home. Even before she got sick, I could be moved to homesick tears by the mere memory of how her hug felt, or the scent of home on a Christmas throw she once used as padding in a huge box full of presents shipped to me.
Now I'm "home" frequently to contribute in this constant vigil of caregiving we've been managing for 21 excruciating months. Each time I arrive home, I see unwelcome changes in Mom. Like growing up, apparently this slow process of dying from cancer has guideposts, too. Three weeks passed since my last visit, and now Mom is suffering from edema in her face, neck and left arm. The nurse isn't sure of the cause; it could be fluid moved down from her brain, or it could be fluid accumulating because she is barely moving. The body has to move to use energy and distribute the fluid taken in from food and drink. Without moving, the body stops processing effectively; fluid pools in the skin. It's painful. Her skin is tight, shiny, and blistered. We raised her arm on several pillows, and it seems to be helping slowly. As usual, there's nothing else we can do.
Mom's cough worsened, too. Some unknown trigger causes her usual cough to get worse, and she has so little strength; she can't do the big belly cough needed to clear it. Instead, she coughs repeatedly and unproductively, and she sighs with exhaustion between the spells. Tonight the coughing spell grew worse again, and we tried cough drops, Mucinex, wet heat - nothing helped. In desperation, I mixed a strong hot toddy and coaxed her to drink it. She grimaced and declared it "nasty", which made me happy because at least her speech was clear. Incredibly, the hot toddy seems to have worked - her coughing stopped.
Unlike in the movies, there is no doctor here predicting how much time we have left with Mom. It's unknowable, and we watch these guideposts closely as though counting them will give us the answer. It doesn't, of course. It only shows the progression of the disease along this terrible road that none of us wants to travel.
Now it is fall
By Edith Södergran
when all the golden birds
fly home across the blue deep water;
On shore I sit rapt in its scattering
glitter;
departure rustles through the trees.
This farewell is vast and separation draws close,
but reunion, that also is certain.
My head on my arm I fall asleep easily.
On my eyes a mother’s breath,
from her mouth to my heart:
sleep, child, and dream now the sun is gone.—
Monday, October 28
Shifting Fluids
Last Thursday through Saturday, Mom had a really loose rattly cough, and with her weakened state, she just couldn't cough anywhere close to "productively" so it was a rough few days. We tried lemon/honey throat drops (yuck!), lemon ginger tea (yum), light pounding on her back (feels good), Mucinex (another pill?!), and finally good old fashioned Luden's original menthol. Whether it was the $0.96 Luden's purchase, or time, something worked and the cough has ceased. Whew. :)
Equally stressful as the cough, all last week Mom's words were, conservatively, 90% not intelligible. Yes and no questions work, but many times as she was trying to communicate an independent thought, it came as out as numbers. 65, 12, 21, 18 18 18 18. I wish I had a decoder ring to figure out what all those meant. I'm sure it would be fascinating. Maybe 18 means "I'm so frustrated I can't get this word out!"
Yesterday mom had a friend from school stop by, she brought a wonderful poem from her son, and together they reminisced about when he was in mom's class, the things she must have told him, the things he obviously remembers...aren't we all like that with a favorite teacher? It's a rare gift to have a teacher who reaches students so that 10, 15? years later, they still think about the teacher and remember specific scenes from class, basketball games, hallway conversations. The visit was warm and wonderful.
Today, Mom seems to be taking her energy from yesterday's visit an channeling it in to clear speech. The brain is a wondrous thing... This can only be explained by the tumor growth, compounded by swelling and fluid buildup. The tumor stays where it is, but the fluid is just that, it moves. So last week when the fluid was (appeared to have been) sitting on the part of her brain that controls speech...today it's not. So we've had these delights.
- "I thought said you did something with your hair." (Mom looking puzzled, and she is the one who ever tells the truth about how bad my hair frequently looks. This is my mom's real speech!)
- "Great job! You did very well. This is good." (After looking --reading??-- Mary Claire's report card.)
- "He is so funny. He knows what he is talking about! And that man is just plain crazy." (While watching a funny segment on an afternoon talk show.)
And maybe most wonderful, last night during the Packers/Vikings game there was an ad for National Car Rental. After the ad ran, she said quite clearly, "I wish I could go." And then this is what happened:
Where would you go?
I would go to (gibberish) wine (gibberish)
Where would you stay?
(gibberish) Bellag, B...(gibberish)
Dad walks in Are you saying "Villagio?"
YES!
What would you drink?
3, (gibberish), 103
103 glasses of wine?
YES!
We followed that with the names of Mom and Dad's favorite wineries. They both enjoyed that conversation, it was a sweet trip down memory lane. We talked about where they would eat, how much they loved the barn doors, how some wineries are too touristy but worth a novice visit, how much they loved the tastings and canapes at Schramsberg.
The tumor is still there, but the fluid and swelling has apparently shifted, and has given us some relief from the darkness. It has gifted us a glimpse back to what has been a wonderful part of life.
Sunday, October 20
Football Sunday
As I've written several times before, football is loved in our family. Friday night lights in high school, college and pro games on weekends. There's always the noise of the sack, the celebration of the score, the frustration at the flags, the way Romo always runs the play clock down. Seriously, the Cowboys are hard to love but we love them anyway.
With Mom's conditioning worsening, football isn't quite as much fun. She slept through all of today's games except for the hour or so she and Dad had dinner and watched the Indy-Denver match up. Her speech is frequently very difficult to understand almost all of the time, and she is frustrated at herself for not getting the words out, and at us for guessing wrong. I find myself agreeing to a lot of things when I think I got the gist, which is an odd and not great feeling.
A bright spot: Mom and Dad enjoyed a visit with long-time friends last week as they stopped by on their way through town. When we all lived far from our extended families, we spent Thanksgiving and Mothers' Day with them. Sharing pictures and memories from the 1970's was very special.
The past few weeks, Dad has grilled some great steaks and of course the good, and occasionally outstanding, wines are always open. Mary Claire had 2 sleepovers at Grandma and Granddaddy's house this weekend, the first in 18 months, which she loved, and she read her new books to Grandma, which was wonderful time for both of them. Caroline has shared the fun of her success at her debate tournaments and Catherine the woes of her broken French Horn and her fun at church....all in the way that loving grandchildren do. Despite the sadness of what's happening in this house, the girls are still growing up and they are sharing as much of that as they can with their grandparents. They bring welcome little bursts of energy and good cheer.
Still knowing what is happening here is sad, and day to day it's just plain hard.
Friday, October 4
Thank you!
Mom had a nice birthday this year - thank you to all her friends who stopped by to share cake, stories, laughs, and hugs. Thanks to all of you who sent birthday cards, they have filled up the desk in her room and 2 have even migrated to being tucked into the picture frame, because the desk didn't have enough room. It's wonderful to see the outpouring of love and greetings to Mom, she enjoyed reading notes and thinking about each of you.
Mom is on hospice care now. She was able to retain the same home care nurse she's had for the last 15 months or so, and that has made the transition to hospice smooth. It's heartbreaking and sad, but it's a slow transition. The past few weeks she's been resting comfortably, keeping her eyes closed most of the time, but enjoying listening to her tv shows. She's eating well, and the skin tears and bruises from her last hospital visit are mostly healed. She's not in pain, and doesn't need pain medication, and for that we are very thankful.
For the past several weeks we've had a new daytime caregiver at the house, she is strong and energetic. She looks for ways around the house to help with when Mom is sleeping, and she is a pleasant and confident companion when Mom is awake. It is a blessing to have her, along with Mom's nurse, on our team.
This weekend, Mom's brother Ricky and niece Erin are here for a visit. Mom had an excellent day yesterday looking forward to seeing them! The next few days will be energizing and fun as they share stories and memories together.
Thanks again for your thoughts and support.
ps... Dad's birthday is in October if you can help flood the house with more birthday cards :)
Wednesday, September 18
Birthday Wishes
Short notice, I know, but Mom's birthday is coming up very shortly. She would love to hear from her friends. If you need her address, please email me and I'll send it to you right away.
Mom's enjoying the company of all 3 daughters and all 4 grandchildren this week, is being loved on and coddled by everyone. Maybe the best present she's received so far is the gift of no more finger sticks for blood sugar and no more insulin shots -- hooray for small victories!
Mom's enjoying the company of all 3 daughters and all 4 grandchildren this week, is being loved on and coddled by everyone. Maybe the best present she's received so far is the gift of no more finger sticks for blood sugar and no more insulin shots -- hooray for small victories!
Wednesday, August 28
Humor above Stress
It's easy to walk into Mom and Dad's house with a smile and a spring in my step because I know my family and I are so lucky to live about 100 steps from door to door from them. Maybe not even that far. We have lots of fun stories to share from the girls' first few days at school, soccer practices, band practice, last minute school physicals, typical work day humor.
It's hard to leave Mom and Dad's house, even with a plodding step, because I want so badly to help ease the emotional stress, trying to maintain a balance of cheerful chatter, looking for a receptive, understanding, or encouraging expression, knowing when to shut up, knowing what will work best for dinner...wondering if there's room in the closet for the nonstop pile of laundry...that's part of the hard part. I always feel like I didn't do enough, and all the guilt of balancing the 2 houses on opposite sides of the street is sometimes almost crushing.
But, in between, I get to see little joys, like this:
Yesterday, I was helping Dad lift mom up onto her wedge pillow so she could see the TV better. She didn't understand what we were doing, and I was telling some story about who knows what...I'm sure I was talking too fast as usual. Mom got very irritated and said "What are you doing?", which caught me off guard so I stopped my story and told her we were just going to move her up in bed. She was frustrated with me, and likely with just being stuck in bed anyway, but particularly at my noisiness. Then, Dad said he was moving her so he could kiss her easily, which she immediately softened towards. And she replied, clear as day, "Well okay, but you know that has absolutely nothing to do with it!"
How does someone with a brain tumor, who can barely verbally communicate, make me and Dad laugh, and release the tension just at the right time? We are thankful for moments like that, they are rare but cherished.
Wednesday, August 21
Back to the comfort of home
Mom was discharged from the hospital yesterday with another long list of prescriptions and instructions, and with news about her tumor. She had an MRI Monday evening which has shown the tumor has grown and passed the brain's midline, and the tumor has bleeding inside it.
Due to the bleeding, mom doesn't qualify for Avastin, one of the 2 available treatments, as it would cause more bleeding. Due to her delicate condition, overall weakness and recurrent infections, she doesn't currently qualify for chemotherapy either, and that's the only other treatment for glioblastoma that exists.
Even if she did qualify, neither of these options will make the tumor go away, and both of these options would trigger significant side effects which would lessen Mom's quality of life. That's the bad news.
What do we do now? We can work on Mom's current quality of life, do our best to eliminate the infection, and help her build strength. If she regains strength and overall "health" then the 2 treatment options will be available. That's the good news.
At home, we are trying to find smiles in little things: mom's instinctive ability to twirl spaghetti noodles with a fork, her hands unbruised thanks to the talent of an excellent IV nurse, her laughter at my error throwing out 2 perfectly good bottles of coffee creamer. Mom is enjoying Dad's bacon for breakfast, it's so much better than hospital bacon. We've been home not even 18 hours and already we've had 2 nurses visit, and mom's caretaker showed up right on time this morning.
Not knowing what will happen is terribly stressful, I can't deny that, but knowing that Mom and Dad can be together in their home surrounded by helpful caregivers and family is comforting.
Thanks to everyone for your positive thoughts and prayers.
Due to the bleeding, mom doesn't qualify for Avastin, one of the 2 available treatments, as it would cause more bleeding. Due to her delicate condition, overall weakness and recurrent infections, she doesn't currently qualify for chemotherapy either, and that's the only other treatment for glioblastoma that exists.
Even if she did qualify, neither of these options will make the tumor go away, and both of these options would trigger significant side effects which would lessen Mom's quality of life. That's the bad news.
What do we do now? We can work on Mom's current quality of life, do our best to eliminate the infection, and help her build strength. If she regains strength and overall "health" then the 2 treatment options will be available. That's the good news.
At home, we are trying to find smiles in little things: mom's instinctive ability to twirl spaghetti noodles with a fork, her hands unbruised thanks to the talent of an excellent IV nurse, her laughter at my error throwing out 2 perfectly good bottles of coffee creamer. Mom is enjoying Dad's bacon for breakfast, it's so much better than hospital bacon. We've been home not even 18 hours and already we've had 2 nurses visit, and mom's caretaker showed up right on time this morning.
Not knowing what will happen is terribly stressful, I can't deny that, but knowing that Mom and Dad can be together in their home surrounded by helpful caregivers and family is comforting.
Thanks to everyone for your positive thoughts and prayers.
Monday, August 19
Hospital update
Mom was admitted last Thursday again to the hospital, and after an entire afternoon/evening in the ER, was wheeled up to her room by none other than the head of the department...who has by now gotten to know Mom and Dad pretty well.
Mom had the normal bloodwork done, and a CT scan. Bloodwork showed an infection which she's taking an antibiotic to fight. The CT scan shows changes. The tumor, or the swelling caused by the tumor, or maybe both, has crossed the midline of her brain, which is a turn for the worse. The tumor that started on the upper left center, now has spread.
At this point, treatment options are incredibly limited, and the best treatment we can give is probably having a warm Starbucks skinny vanilla latte at hand in the morning, a chilled red raspberry flavored sparkling water throughout the afternoon, and plenty of kleenex at mom's left hand to cover her fairly constant coughing. She likes holding onto her kleenex.
We are waiting today to see mom's neurooncologist, who hopefully has a great medical plan for treatment, but realistically we know that is unlikely. We expect to learn about plans to go home instead.
Please no calls at this time, we'll update the blog when we have more information. Email is good but forgive tardy replies please. Thanks.
Mom had the normal bloodwork done, and a CT scan. Bloodwork showed an infection which she's taking an antibiotic to fight. The CT scan shows changes. The tumor, or the swelling caused by the tumor, or maybe both, has crossed the midline of her brain, which is a turn for the worse. The tumor that started on the upper left center, now has spread.
At this point, treatment options are incredibly limited, and the best treatment we can give is probably having a warm Starbucks skinny vanilla latte at hand in the morning, a chilled red raspberry flavored sparkling water throughout the afternoon, and plenty of kleenex at mom's left hand to cover her fairly constant coughing. She likes holding onto her kleenex.
We are waiting today to see mom's neurooncologist, who hopefully has a great medical plan for treatment, but realistically we know that is unlikely. We expect to learn about plans to go home instead.
Please no calls at this time, we'll update the blog when we have more information. Email is good but forgive tardy replies please. Thanks.
Monday, August 12
A song for Mom
There's a song in my heart for Mom today. It's been a rough few weeks at home. Here's hoping and praying that this sunny Monday will bring the start of a new week and new energy for Mom and Dad.
Everything went wrong,
And the whole day long
I’d feel so blue.
For the longest while
I’d forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I’ve found you at last -
I’ll be loving you always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.
Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.
I’ll be loving you, oh always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.
Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.
Not for just an hour,(Always, by Irving Berlin)
Not for just a day,
Not for just a year,
But always.
Sunday, August 4
HGTV, birds, and fish
With cable tv installed in mom's room, she's been doing a lot of shopping...house shopping...redecorating, etc. It's a great diversion and since she's not yet able to get into her wheelchair, we're all enjoying the Property Brothers, Love it or List it, and the day-long shows about the most unique homes, pools, kitchens, whatever, in the world. She loves it!
The birds have returned to the bird feeder - after about a month hiatus, the blue jay, the cardinals, and the little finches are going through 2-3 refills a week. This bring Mom great joy that her friends have returned. Who knows where they have been, we are sure glad they are back this weekend.
We have discovered a new little take out place that's good for a hot dinner. The little Taco Bell-turned Italian-turned German restaurant close by is now a seafood restaurant...which I was very suspicious about at first. Nothing survives in that former Taco Bell shell of a building. But...this place is great! Very fresh fish and shrimp, onion-free hush puppies, which we've never found outside North Carolina. They do run out of things, today they ran out of chicken for a sandwich, last time they ran out of metal utensils and macaroni and cheese, but they have plenty of energy and big smiles when complimented on their food. I hope everyone pays a visit to O'Frills Restaurant. (not a fancy place or a fancy website, but good food.)
Mom is still battling an infection, which is so frustrating to her, preventing her from making progress in therapy because her energy is just zapped. It seems this infection has been continuing since early May. It affects her quality of life much more than her tumor and its swelling does. The last doctor's appointment confirmed there has been some minimal grown in the tumor, and associated swelling with it. Neither of these, though, are to blame as much as the ever-present infection.
Mom has had several special visitors this past month, family and friends from around the country whose paths have brought them through or to the DFW area. These visits are so important to both Mom and Dad. If you are around and have a few minutes to visit, it is energizing to everyone. Mom's speech is sometimes pretty difficult but she understands what she hears perfectly - she just can't always communicate back with ease. Her illness hasn't hurt her friendliness, warmth and concern for others, though. She loves her family and friends.
The birds have returned to the bird feeder - after about a month hiatus, the blue jay, the cardinals, and the little finches are going through 2-3 refills a week. This bring Mom great joy that her friends have returned. Who knows where they have been, we are sure glad they are back this weekend.
We have discovered a new little take out place that's good for a hot dinner. The little Taco Bell-turned Italian-turned German restaurant close by is now a seafood restaurant...which I was very suspicious about at first. Nothing survives in that former Taco Bell shell of a building. But...this place is great! Very fresh fish and shrimp, onion-free hush puppies, which we've never found outside North Carolina. They do run out of things, today they ran out of chicken for a sandwich, last time they ran out of metal utensils and macaroni and cheese, but they have plenty of energy and big smiles when complimented on their food. I hope everyone pays a visit to O'Frills Restaurant. (not a fancy place or a fancy website, but good food.)
Mom is still battling an infection, which is so frustrating to her, preventing her from making progress in therapy because her energy is just zapped. It seems this infection has been continuing since early May. It affects her quality of life much more than her tumor and its swelling does. The last doctor's appointment confirmed there has been some minimal grown in the tumor, and associated swelling with it. Neither of these, though, are to blame as much as the ever-present infection.
Mom has had several special visitors this past month, family and friends from around the country whose paths have brought them through or to the DFW area. These visits are so important to both Mom and Dad. If you are around and have a few minutes to visit, it is energizing to everyone. Mom's speech is sometimes pretty difficult but she understands what she hears perfectly - she just can't always communicate back with ease. Her illness hasn't hurt her friendliness, warmth and concern for others, though. She loves her family and friends.
Tuesday, July 16
Home!
Very brief update - Mom is home! After having all IVs removed, down to just pills which she can take at home, and generally feeling back to "normal" Mom was discharged from the hospital and is back home.
Nice safe, cool ride from the stretcher transport service, and she's back home where we all wanted her to be.
Yeah!
Nice safe, cool ride from the stretcher transport service, and she's back home where we all wanted her to be.
Yeah!
Saturday, July 13
Hospital Update
Day 3 in the hospital, several bags of IV antibiotics, oxygen to help with breathing, MRI, CT scan, blood work, etc... Mom has several new skin tears and bruises from being moved from ambulance to stretcher, from stretcher to bed, and from IV placement and multiple blood draws. The steroids she has been on have made her skin paper thin, and every little bump causes a bruise. And bruises take weeks to heal.
The good thing about the IV is that the antibiotics have done a super job of addressing the infection - wherever the infection was living. Since being on them for 2 full days, Mom's speech is significantly improved, although still not where she wants it to be. Her arm/leg swelling is down, and she can lift her right arm completely above her head. She can feed herself with both hands, and she can even cross her fingers. :)
That's a trick I haven't seen in a very long time. She and Mary Claire were crossing fingers for health last night. We have fingers crossed that this hospital stay will be brief and she'll be home and well very soon!
Friday, July 12
Finding the right fix
Mom has been out of the hospital for several weeks now, but has never really recovered back to her previous state of strength and health. Some days have been better than others but she's not been in her wheelchair for at least a month, and her speech comes and goes.
This past Monday and Tuesday were good days, strength seemed to be on the strong side, spirits were high, and plans were to work towards a wheelchair attempt on Friday with physical therapy. However, this persistent infection she cannot get rid of had other plans. On Wednesday her speech declined significantly, her blood pressure was up, and her right hand wasn't moving well - and she slept almost all day. Thursday, her speech was 90% garbled, other symptoms worse as well, plus she had a headache and swelling of her right arm, hand and face. Enough of a decline to require a trip back to the emergency room.
Good people work at St. Paul's and while it's tiring to be in the ER for 6 hours, they take excellent care of mom. She had an several tests run, and none indicated significant problems. She was given IV antibiotics which she responded well to, and by the time she was admitted to a room, with Dad on a reclining chair, she was speaking much better and moving her arm a bit.
One bad thing - they can't put an IV in her swollen arm, so it's in her left (stronger) arm, right at the elbow crease, so she can't move that arm either! It might work out well enough because she's very motivated to feed herself, and she tried hard to eat a roll by herself last night. (It's the tiny little successes that make us all feel better.) The chicken fried steak, green beans, and potatoes from Texas Roadhouse take out were so appreciated - thank you to Scott and Mary Claire for being the cross-town delivery service. :)
This past Monday and Tuesday were good days, strength seemed to be on the strong side, spirits were high, and plans were to work towards a wheelchair attempt on Friday with physical therapy. However, this persistent infection she cannot get rid of had other plans. On Wednesday her speech declined significantly, her blood pressure was up, and her right hand wasn't moving well - and she slept almost all day. Thursday, her speech was 90% garbled, other symptoms worse as well, plus she had a headache and swelling of her right arm, hand and face. Enough of a decline to require a trip back to the emergency room.
Good people work at St. Paul's and while it's tiring to be in the ER for 6 hours, they take excellent care of mom. She had an several tests run, and none indicated significant problems. She was given IV antibiotics which she responded well to, and by the time she was admitted to a room, with Dad on a reclining chair, she was speaking much better and moving her arm a bit.
One bad thing - they can't put an IV in her swollen arm, so it's in her left (stronger) arm, right at the elbow crease, so she can't move that arm either! It might work out well enough because she's very motivated to feed herself, and she tried hard to eat a roll by herself last night. (It's the tiny little successes that make us all feel better.) The chicken fried steak, green beans, and potatoes from Texas Roadhouse take out were so appreciated - thank you to Scott and Mary Claire for being the cross-town delivery service. :)
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