Mom's funeral was held on Tuesday, November 30, 2010 at 12:00 Noon. Below are the eulogies delivered during the service:
There is a song we learned many years ago at Girl Scout Camp…”Make New Friends, But Keep The Old.Some are Silver, The Others Gold”.I am very touched that D wanted me to say a few words about the OLD.
Some people are lucky enough to have , what I call, “Forever Friends”.D was one of mine. And it all started back in Scranton, PA. Growing up there in the 50’s and 60’s was a unique experience, but no one realized it at the time.We thought everyone had the childhood we had.But then we grew up, moved away, started our own lives, and made new friends.
It would always amaze people when we told them how we lived as a pack – not a clique – but a pack who did everything together…from walking to school taking up the whole sidewalk, to Hebrew school right through to Confirmation, to Saturday afternoon movies where we took up a whole row saving seats for each other,toSunday clubs at the JCC, to summer camp, to high school reunions, to each other’s weddings.There were never 2 or 3 of us; it was always a pack.
About 5 years ago when we were all turning 60,and lifebecame a little less hectic, income a little more disposable, we decided to celebrate with a Birthday Bash Vacation. Seven of our group were able to make it, so off to Cancun we went, dubbed by the staff there as The Seven Lovely Ladies.We caught up, rekindled, vowed to keep it going.And we have.
Now there is one less member of our pack. One of Our Lovely Ladies is gone. There is a great void; an emptiness that can never be filled.But D has shown the rest of us how to meet the end of our days with such grace and dignity and bravery and, most of all, surrounded by so much love.D has had a profound impact on each and every one of us here today and it all started way back when in Scranton, PA where we learned the true meaning of everlasting friendship.And now, we are Six Lovely Ladies.
Co-Worker: I am so very honored that D asked me to speak today.I met D when she began her employment at the library where I was a librarian.Eventually she became a supervisor of 12 staff and numerous student aides and I became her supervisor as the Head Librarian.Over the next 25 years, I came to know D from many perspectives.I would like to talk about just 3 of those today.
The first perspective is one we all know—which is—with D you get M.You can’t avoid it! It is not a coincidence that both of them wound up working at the same place of employment.I can only imagine that when the children were old enough to be thoroughly engaged in school and friends, M began to “shop” for a job, “shop” is the operative word here for those who know M well.Yes, M began to “shop” for a job, where he could keep an eye on D, OR was it the other way around—where D could keep an eye on M?
There were more times than I can count when D was in my office to go over a process, a problem, or an update of importance in the daily affairs of the library.More often than not, my phone would ring, and I would answer. “Hi M.”M would ask, “Is the boss there?”I’d hand the phone to D who was clearly agitated-- “What the heck do you want? [But she didn’t say ‘heck.’]She said, “What the heck do you want?Don’t you have a job?”M most likely wanted to know if she had all the ingredients for what they would be cooking.Should he go buy that shirt he wanted?What else did she want him to pick up from Costco?As M received his instructions from D, D’s eyes widened and rolled in half circles, she shifted impatiently from one foot to the other, and ended with, “Is that it?! GOODBYE M!” And she hung up.And as though she had to explain further how she felt about his intrusion, she slurred her words in a huff of irritation, “Such a pain in the ….”In the pause that followed, I felt like an intruder during their private moments of marital bliss.
While D played the perturbed wife when M did the dialing, she also knew M’s strengths.One day shortly before Christmas, D stopped by to chat.She asked if my son got everything on his Christmas List.I replied proudly that yes indeed he had, all but one gift. Being married to the extreme shopper, she found that concerning and asked what Santa couldn’t find.I told her and within seconds she was on the phone to M with the latest instructions, “M, listen to me, N asked Santa for a stuffed Cat in the Hat, and Santa couldn’t find it.Can you pick one up today?”They said goodbye and two and a half hours later, M stopped by with the last of Santa’s gifts.D couldn’t be more proud.They were a team!D and M were a team!
D’s ability to solve problems applied to her work in the library, as well. D’s attitude towards work was always focused on getting things done.Many considered her to be the “go to” person.She kept a catalog of supplies, resource people, and furniture in her head so that at any given time, she could find what you needed or knew where to get it.She was dependable.She often came early or left late. She developed the scheduling for her staff to make sure the desks were always covered even if that meant staying later to cover for someone else.
She was very detail oriented and enjoyed working on the database system that controls our collection.I was impressed with the knowledge she developed over the years about the record structure and the complex relationships of an integrated catalog.She liked to work on projects to clean up the catalog from a circulation perspective.She encouraged her staff to bring problems to her.She was a good listener for those employees who consulted with her.She thought carefully about appropriate solutions.It can be said that D gave 100 percent effort to provide service in our very busy library over the 25 years she worked there. I immensely enjoyed working with D.
Not only was D knowledgeable about how the library functioned and knew how to get the work done, she brought her thoughtfulness and caring to work and made family out of co-workers.She organized and participated in showers and birthday parties.She knit sweaters or blankets for expectant moms and dads.She cooked from her own library of recipes that became signature at library parties.I know so many of you that worked in the library during those 25 years who invited D to your family functions.D always looked forward to attending and shared your special joys and even your sorrows.
Lastly, I wanted to mention how D impacted my life as a human being.While I was her boss, she was my mentor.She taught me so much but perhaps her greatest gift was to show me how to be a caretaker.Long before my mom and dad became ill, I watched how D cared for her own mom.With responsibility and love, D did everything for her mom.She moved her mom from Scranton.She set her up in appropriate living facilities.She took her mom to medical appointments, bought her clothes, medicine and, yes, Breyer’s Chocolate ice cream.She was the ultimate devoted daughter not only for her mother but for M’s mother too.In an odd turn of events, her mother was placed in the room next to my mom’s in the Nursing Home for the last 2 weeks of her mom’s life.I stopped in next door to see how she was doing only to see D lying on the bed, her arms wrapped around her mom, gently comforting her mother in the last hours of her life.It was poignant and touching—it was a moment of beauty.D’s gift of love and caring was given back to her.During her illness, her family, visitors, and guestbook friends formed a support system of inconceivable magnitude.I can only imagine D’s satisfaction on this very day--that she was so loved and cared for by all those lives she touched.I am grateful that she touched mine and was proud to call D my dear friend.
As all of us here feel, it is with much sadness that I am before you to say a few words about our beloved D.
A and I met D, M and T soon after we moved to our neighborhood about 34 years ago. Soon thereafter, J was born and then our daughter R was born and just a few years later our son S was born. Our neighborhood friendship developed into a real friendship and then, as I believe is the case with many of us here today, an even closer family-like relationship.
We all knew D as a very warm, friendly person who would go out of her way to help a friend. I will never forget when D, at her request, stayed at our house overnight to be with R when A and I left for the hospital for A to give birth to S.
All of us here have been extremely saddened since we learned a few months ago of D's serious illness and we have done much to help and support M, T, J and their families during this very traumatic time. M, T and J, please know that we will continue to help and provide support to you.
M, T and J, all of our lives will continue on, but with more strength and devotion to our family and friends because of our wonderful memories of D.
Son: So how does a son talk about his mother?How does he stand in front of family and friends and honor her memory?How does he sum up a life in a few minutes?More importantly, how does he say goodbye?
I’ve been thinking about these things for a few months....and the only answer is, “he can’t....but he’s needs to try.”
Most of you in this room know me, some intimately, some casually....but I don’t think it’s a stretch for me to think that all of you, every last one of you knows how much I loved mom.In the past few months I have really done my best to be there for her, to remind her that she has fulfilled her destiny on this planet, to let her know that NO MATTER WHAT........NO MATTER WHAT, she will NEVER be forgotten, and to further ingrain the fact that she has had such a PROFOUND part in making me the person you see before you.I hope she left us knowing that.
Children are supposed to learn from their parents--right from wrong, how to be independent, how totreat others, all of that stuff.Somehow you grow up, you move out, you start a family of your own and your parents are no longer parents in the truest sense of the word.What they become are confidants and friends....and in many ways you feel like you have nothing left to learn from them except the occasional sage advice from an elder.But since mom’s diagnosis she taught me SO MUCH.She taught me that fighting a win-less fight for the right reasons can be admirable and honorable.She taught me that strength really does come from within and not some bullshit made in the gym or the practice field.That’s fake strength and at any moment that can be taken from you.You couldn’t take this strength from her, it was nothing short of incredible. Mom was debilitated, she couldn't hold my children anymore, she couldn’t walk, she couldn’t see very well, she became a shell of herself.But she trudged on...and with very little hesitation.She AMAZED me EVERY SINGLE DAY, because I know that in my life there are many days where I just want to give up, I just want to pack it in and be done with everything, everyone....and quite frankly, my problems are trivial at best when held next to hers.She showed me what strength and resolve really is, how powerful love is and that extra time with family is worth getting poked, prodded, moved, rolled, wiped, fed, cut open, radiated, pumped full of poison, and confined to a bed or wheelchair.I envy that strength and I hope that she knows how much I admired this tenacious attitude from day one.
She didn’t have to fight, but she wanted more time with her family....and that’s not just Dad, T, E, Micah, Maya, J, Paige, or Peyton, that’s everyone in this room.I wanted her to fight and told her this, but I never kidded myself that this was going to have a good outcome.Right after the surgery when she was pretty banged up, I questioned whether or not this was a good thing after all....and I did for quite some time.But then something amazing happened.Something I only thought possible in Hallmark movies or one of the Lifetime flix my J loves so much.........I saw family and friends alike rally around her in a manner that is nothing short of shocking.I knew she was loved, but I never knew how much she affected so many people.....and how much she continued to do so through this entire process.From the absolute bottom of my heart, I thank each and every one of you as well as the countless people all around the net that reached out.If something like this were to happen to me and I received 10% of that love, I would be an extremely lucky man.
That’s the thing that really set in with me recently...Mom WAS a lucky woman, she was raised as an only child but never felt too alone due to friends.She got married to a man who was educated, caring, and because I think I look a bit like him, STUNNINGLY HANDSOME.Together they had 2 children and they raised these kids to the best of their ability.They never wanted for anything and the house was filled with love (most of the time....when it wasn’t love, it was noise........). These kids were very different from one another, One of the kids exceeded all expectations when it came to schooling, the other........yeah, not so much, but he came around eventually.The one thing that they always had in common was their family.That never wavered.One of these kids grew up to be nothing short of incredible throughout this ordeal.My sister laid her life down to take care of mom at the end and I don’t know that I could have been more proud of her.I see what she did and all I could do is sit and watch in awe and know that in a million years, I could never be as incredible as that.Mom was lucky...but not nearly as lucky as Dad, T and I....because we got to spend 33, 37 and 42+ years with her.Without mom, I am nothing.........and I mean that literally and figuratively.I know that T and Dad feel the same.There is a void in our lives that I don’t think will ever be filled, and I am overwhelmed with a profound sadness in my heart the likes of which I wouldn’t wish on my worst enemy.
So here we are today, saying goodbye to the single most influential female in my life...perhaps some of your lives as well.I know I could have and should have been a better son in so many ways.But I don’t harbor guilt over this, because I know that mom was proud of the friend, the husband, the father........well, really, the man I have become.The truth is all I ever wanted was for her to be proud of me.When something good happens to me, the first person I always called was mom (much to the chagrin of J)....I got promoted, I got a raise, whatever, take your pick.......and the reasoning behind that call I have realized as of late is that I just wanted her to know that I wasn’t that screw up from years ago.I have always felt like I needed to make up for that little shit I was.I probably didn’t, but I wanted her to know that she didn’t go wrong with me, she actually did good.SHE deserved that.......I know that the next time something great happens I am going to pick up my phone and just dial instinctively and I know at that moment it will be like this is happening all over again, but that’s ok, because I know she’s watching me and I hope it is with a swelled chest full of pride, because again......SHE DESERVES IT.
Mom, I need you to know that J and the girls love, I won’t say “loved”, they love you and I feel terrible that they won’t get to know you as I did.Know that you DID affect them, and you WILL NOT be forgotten by them.
I am going to miss you mom, and I don’t blame whatever power is up there for wanting you to come back..........because I WANT YOU TO COME BACK, but I don’t have that power.I don’t NEED you anymore, I just really really really want you around.I promise to try to be a better man, to have more compassion for my girls, to be nicer to people, to treat J more like the goddess she is, but most importantly, to be a good son and brother to the people who meant the most to you in this world.
I have given up trying to find answers, even if there were any, none would satisfy me.But I will say this....It wasn’t supposed to be like this...........but that’s OK, because you are no longer struggling, you can rest, it’s over.You left this world knowing how much of an impression you had on so many people, I can only hope that I have that honor one day.
I love you mom and I won’t ever be the same without you.So say hi to all the grandparents for me and you better have some sweet and sour meatballs for me when I arrive someday.I love you so much and I am so sorry any of this happened to you, you deserved better.
T: First of all, I wanted to thank all of you for coming today.Over the past few months, we have been humbled by your support…on the blog, your emails, your visits, your calls, your food, your offers of help, your love and your support. My mother often said how this experience had changed her.She said that the outpouring of support for her was mind boggling, and it taught her that we should never sit back when those we know, even just acquaintances, are going through rough times.I have learned that lesson, too.We had always believed that in hard times, families needed to be by themselves…to be private.Through this experience, we learned that the love, support, encouragement, kind thoughts, and offers to help are invaluable, not intrusive.I will forever be grateful for all that you have done for me and my family during this trying time, and I am lucky that so many decided not to just let us be.My family owes so much to so many of you, and all I can do is express our thanks, and tell you that it mattered.It made life easier, it made life better, and your strength helped carry us through.We are forever changed because of this experience, and I hope that we will all be better people for learning that lesson.
Today we are here to honor my mother.I think the outpouring of support is a testament to her life….to the person she was, to her kindness, to her humor, and to the friendships she cultivated over a lifetime.I could spend days talking about my mother (and as you all know from the blog, I can certainly wax poetic at the drop of a hat).It is so difficult for me to think about where to begin, what to say.How do you summarize the essence of a person?I could tell you all that my Mom grew up in Scranton, PA, that she was an only child, that she graduated from college, that she was a social worker when she met my father, that they met when he crashed a wedding, that she worked in a series of part-time jobs when she moved here, that for the past 25 years, she worked as a Library Assistant (and eventually became the Supervisor) at a library, and that she was a loving daughter, an amazing mother and grandmother, and a good wife.I could tell you that my mother loved to read, that she was a wonderful baker and a cook, and that she crocheted and knitted some of the most beautiful afghans, sweaters and scarves I’ve ever seen in my life.My mother was kind.She loved her family, and she loved her friends.I could talk about my Mom’s humor, or our relationship, or her friendships, or how much she loved us.All of that is true. And yet…it somehow doesn’t say enough.
One of the things my mother hates most about funerals is the poem “Eishet Chayeil” – Woman of Valor.My mother felt that it extols values that she did not represent or even appreciate…a submissive woman, toiling day and night to keep the perfect Jewish home.When we received my mother’s diagnosis, I knew that there would be no reading of Eishet Chayeil at her funeral.At the time, I posted something on the Caring Bridge site about needing to find a better poem to read, and my Mom’s friend, S, gave me a card the next day, with a poem folded inside.I’ve carried it with me ever since, and I think perhaps it does a better job of identifying the “value” of a person’s life, and maybe a better framework for me to tell you about my mother:
I read of a man who stood to speak at the funeral of his friend. He referred to the dates on her tombstone from the beginning…to the end. He noted that first came the date of her birth, and spoke of the second with tears, But he said that what mattered most of all was the dash between those years For that dash represents all the time that she spent alive on earth, And now only those who loved her know what that little line is worth. For it matters not, how much we own; the cars, the house, the cash. What matters is how we live and love when we’re living out the dash. If we could just slow down enough to consider what’s true and what is real, And always try to understand the way other people feel. And…be less quick to anger and show appreciation more, And love the people in our lives like we’ve never loved before. If we treat each other with respect, and more often wear a smile, Remember that this special dash might only last a while. So, when your eulogy is being read with your life’s actions to rehash… Will you be pleased with what there’s to say about how you spent your dash?
Each of you here today (and so many more who are unable to be with us) are part of how my mother spent her dash, and those of us who loved her do understand the value of that dash.I think one word that can easily be used to describe my mother’s dash is “friend.”She was a wonderful and kind friend to so many, including me – a sounding board, a confidante, and a cheerleader.My mom is a rare breed…she has so many lifelong friends since her childhood in Scranton, friends she met as a young, newly married adult building a life in a new city, friends she met through work, and more recently, friends that she collected through her struggle with cancer.
Mom would do whatever she could to help a friend…make food, run an errand, babysit a child, drive somewhere, rescue a knitting project, hold a hand, sit in a hospital waiting room, drive 8 hours to a funeral, teach their children to drive, pull loose teeth, or just sit and listen and laugh and talk.She tried her best to always be there for her friends whenever they needed her.In recent weeks, she read the bookTuesdays with Morrie, and when she finished, she asked me if it would be okay to take Morrie’s line from his tombstone (“teacher to the end”) and tweak it a bit…she wanted to put on her tombstone “friend to the end.”Friendship was one of the most important parts of Mom’s dash.
Humor was another huge component that defined Mom’s dash…she was snarky and spunky and funny, right up to the end.She had a keen sense of humor and a quick wit, and she could always deliver a well-timed line.She loved practical jokes, she loved to laugh, and she loved to yank people’s chains.Her eyes would dance when she was looking to laugh…and when my Mom decided it was time to laugh, well, it was time to laugh. I’ve often spoken of our inside jokes on the Caring Bridge site, and I’m going to miss laughing with my Mom and our silly little sayings.
I think food defined my mother’s dash.She loved to eat (especially on those steroids), she loved to try new and different foods, and she loved to cook and bake…but only from scratch.She made the most delicious apple cake, and cookies, and applesauce and mandel bread and brownies.She was constantly trying new recipes, but there were certain foods, especially holiday foods, that we liked a certain way…like her brisket, and her filled cabbage, and her blintzes, and her Thanksgiving stuffing, and her pumpkin pie.She loved a good holiday meal, and while she hated the mess and the effort, she loved doing the holidays “just right” with our food, done our way.
My mom was also a bit quirky, but her quirks were endearing and why she has been so loved during her dash. I loved that she started cooking or baking whenever a snow storm hit…usually soup, or filled cabbage, or her latest baked goods obsession (one year it was blueberry muffins, the past two years it has been mandel bread).She loved to guess the voices in television commercials (I think it is something she started with her father many years ago).She had a tendency to goose us (particularly my father) in public, just so she could hear a good squeal.I loved the silly little dances she would do for me singing the Chip and Dale song, and I loved when she would imitate cookie monster and sing “C is for Cookie…”Mom loved beautiful voices and singing…she always joked how in her next life, she wants to be able to sing.
I would also say Mom’s dash was defined by all the little things she did, especially for us.I remember as a child that she always made my lunch…and would use cookie cutters to cut my sandwiches into different shapes.She often put post-it notes in my lunch, and she would hide post-it notes with messages like “I love you” and “I miss you” in our clothing drawers when we went off to camp.My mom always had homemade soups and baked goods and applesauce for us.Every year, we would go out to the orchard and pick fresh vegetables and fruit, especially strawberries.We would pick 10 flats, and my mother would spend a day making strawberry jam and pies.We always had enough jam to last us the entire year through.I think I must have been well into my teenage years before I ever had store bought jam!Every year, she made sure to give gifts for all of her co-workers.She would start searching in July, trying to find the perfect gifts.I remember as a child all of the craft projects she did…crocheted bookworm bookmarks, pom pom magnets, lanyards and so many more, often as gifts for goodie bags or holidays.Mom was always working on a sweater or an afghan or a scarf.She used to make us hats and gloves, and I remember that she would crochet a string and attach our mittens to each end and thread them through the sleeves of our jackets so we could not lose them.She did so much for us and for everyone to make our lives…nicer.
The end of Mom’s dash has been defined by her strength and courage.This year, we lost Grammy, my mother’s mother.At times, watching my mother through this battle was like watching her become my grandmother.It was difficult to see my mother age, almost overnight.As the brain tumor and surgery affected her, I noticed some of my grandmother’s nervous habits surfacing in my mother.It was bittersweet…terrible to see in my mother, and yet it made me smile to catch a glimpse of my grandmother again.At her funeral, my mother said that my grandmother’slast 2 weeks were a true testament to her strength, both physical and mental, and that my grandmother raised the bar high and my mother only hoped that she could reach it as Grammy did.Mom – you did.You faced this horrible illness with such strength and courage, and you fought hard, and you did better than anyone predicted.I’m stunned that this stroke came along and took you out after all your fight and hard work.It isn’t fair.You faced this battle with courage, grace and strength.You earned the right to have more good time, and frankly, we were all robbed.I’m angry about that, but so proud of you and all you did.I’m sorry for all the things the cancer stole from you, and yet proud of how you held on to yourself…you were kind, you worked hard to improve, and you always kept a positive outlook.As you have said before, you raised the bar, and I hope that I can reach it the way you and Grammy did.
Before she learned of her diagnosis, my Mom never realized that she had touched so many lives.Through the blog and your messages, she learned at the end of her life that she mattered to so many, and that the things she had done made a difference.That knowledge touched her, and meant the world to her.She told me one day that you never know how the tiniest little nothing you do can be a big something to someone else.I think that is an important lesson for all of us.
Towards the end, my mother gave us a list of things she wanted to “take with her.”I think many of those things represent what she valued in living out her dash…pictures of her family, a hat crocheted for her by a dear friend, a phone so she could “keep in touch” with her loved ones, and Nugget’s remains.
I have asked the Rabbi to read the Yizkor poem “As We Remember Them” today.I have always found that poem beautiful, and I think it is true…it is in all the little things of every day life that will help me remember my mother.I will take her with me, and she will live on in each of us, in our memories of her.I believe that “As long as we live, she too will live, for she is now a part of us, as we remember her.”
I’d like to part with a poem that my Mom’s friend and co-worker, G, brought to her when she was in the hospital.It resonated with her, and I think it speaks to the value of my mother’s dash:
Count your garden by the flowers, Never by the leaves that fall. Count your days by golden hours, Don’t remember clouds at all. Count your nights by stars not shadows, Count your years with smiles, not tears. Count your blessings not your troubles,
Count your age by friends not years.
As We Remember Them Poem read by Rabbi:
At the rising of the sun and at its going down, We remember them. At the blowing of the wind and in the chill of winter, We remember them. At the opening of the buds and in the rebirth of spring, We remember them. At the blueness of the skies and in the warmth of summer, We remember them. At the rustling of the leaves and in the beauty of autumn, We remember them. At the beginning of the year and when it ends, We remember them. As long as we live, they too will live; for they are now a part of us, as we remember them. When we are weary and in need of strength, We remember them. When we are lost and sick at heart, We remember them. When we have joy we crave to share, We remember them. When we have decisions that are difficult to make, We remember them. When we have achievements that are based on theirs, We remember them.
As long as we live, they too will live; for they are now a part of us, as we remember them.
Overwhelmed. I have to say that I am sitting here tonight, simply overwhelmed. I am overwhelmed by the emotions from today, I'm overwhelmed by the turnout at the funeral, and I am overwhelmed by all that has happened in the past few months.
Today was an emotionally draining day...today we buried Mom. Maya was up screaming most of the night - she finally drifted off at midnight (well, after 2 car rides with Daddy), but she woke up again at 5:00 am. I gave up and brought her into bed with us so I could get a little sleep before the funeral.
The house came to life around 8:30 when our cleaning lady arrived. Megan arrived at 9 and started getting the children ready. Dad, my brother, SIL, M and the girls arrived around 9:45. We were busy getting dressed, prepping the house, organizing our things, and entertaining the children. Around 10:45, the limo arrived, and we left for the cemetery.
I forgot to eat this morning...I was feeling nervous and sad and shaky all at the same time. I wanted to get it over with...and I was filled with dread at the thought of going through this day. We were all on edge...my brother was upset because he had lost his bracelet that he considers his lucky charm, my father was empty chattering about anything that popped into his brain, and I was doing my best to fight back the tears.
We arrived at the cemetery, and I started to well up when I saw the tent over my mother's grave. We made our way to the chapel...and we were immediately greeted by our extended family. It was such a relief to see their faces. I could feel that we were surrounded by love, and my emotions started to run high.
I do not know how long we were standing there, but we were slowly moved into a room to the side of the chapel. The flow of people coming in to console us began...family, friends, neighbors, co-workers. One by one, they came. After 10 or 15 minutes, we started to become a little amazed. The people kept coming...and coming...and coming. There was a line into the room to see us, the chapel was filling up, and we could see out the window across the cemetery as the cars lined up and the parade of people made their way to the chapel. We were amazed by some of the faces...good friends, family, co-workers, and so many faces from the past. Some people drove from hours away to be there for us.
My mother's co-workers were there in droves...I can't imagine there were enough people left behind to run the library. I was so touched to see all of them, and so thankful for all the support they have shown Mom throughout this battle. My father's department was there, and many from the College administration. My brother's co-workers were there, and so many of our friends - both from the present and our childhood. DH's family came down, and those who couldn't make it sent emails. We even had a friend who was only one month post kidney transplant there to honor Mom.
It warmed my heart to see old friends...especially a few former neighbors. I was particularly touched seeing two former neighbors again after all these years. I can't even begin to mention all the wonderful faces. The faces kept triggering so many memories...of my childhood, of the past, of my mother. I can't possibly name all the hundreds of people who were there (and yes, it was hundreds - my best guess is 200-250 people), but I wanted to extend my thanks to each and every one of you. I was awed by your attendance.
The funeral started late...due in no small part to the Rabbi's late arrival (he was late because he was trying to fulfill one of my mother's requests). At one point, a hush fell across the chapel, as if everyone thought the service was about to begin. As the silence hovered, I felt compelled to announce that we were still waiting for the Rabbi to arrive.
He arrived a few minutes later, and we quickly did the Kriah ceremony - my father, brother and I each pinned a black ribbon to our clothing and tore it to signify the rending of the heart for the loss of the loved one. By 12:15, we were out in the chapel, seated, and the Rabbi began the ceremony.
He welcomed everyone, and he spoke eloquently about my mother. He spoke of her kindness, of the love she had for her family, and his impressions of Mom. He did a few blessings, and he then turned it over to those of us who were giving her eulogy.
We started with my mother's childhood friend, S. She spoke of their childhood together, and the lifetime of friendship they shared. S's speech was touching, beautiful, and moving, and she talked about the seven lovely ladies who have been forever friends. She concluded her speech with a farewell to my mom, and sadness that now there are only six lovely ladies.
My mother's boss and friend from work spoke next. She brought a splash of humor to a very sad day. P did a wonderful job illuminating the relationship between my parents, and describing my mother professionally and as a colleague. P's word made me laugh as I pictured my mother rolling her eyes at one of my father's phone calls, and she made my heart swell with pride at my mother's service to her job.
L, our family friend, spoke next. He, too, spoke of Mom's friendship and kindness, and he spoke about how through the years, like so many others, our families' relationship grew into something more than just friendship...we became family. I think that epitomized so much about my mother...she took friends and made them family.
My brother followed L. He gave a powerful speech, and I don't think there was a dry eye in the house. He talked about my mother's strength, and his love for her, and he talked about how he hoped he would make her proud.
I spoke last. I remember being weepy from my brother's speech. I also remember thinking that so much of what I had planned to say was said in a similar way already...everyone talked about my mother as a friend, and we used similar words to describe Mom's tenacity and humor. I think my brother and I even had a few of the same phrases in our speeches. As I stood in front of the room, I was stunned to see how many people were present. The room was filled, there were people standing around the edges, and I could see that the vestibule was filled.
I was having a hard time speaking. I felt shaky and I could barely see the words I had written. I suddenly felt cold and fidgety, and all I could think was "Mom is lying there in that box." I think I mumbled a few words about how everyone had said the things I had written. I worked my way through the speech stumbling at times over the words, feeling largely inarticulate and tongue tied. I couldn't manage to make eye contact and look up and out - I felt my eyes glued to the papers in front of me, and my fingers incessantly shredded a kleenex and folded the corner of my speech back and forth. I worried about whether I was speaking loudly or clearly, and I tried my best to slow things down, because I know that I have a tendency to speak 90 miles a minute when I am nervous or upset. To me, my speech felt flat...that I didn't say the right things or speak as I had intended. I felt myself wishing that I had managed to express myself as well as my brother did.
When I finished speaking, the Rabbi read the poem I requested (As We Remember Them), and he said a few more blessings. In a break from tradition, we asked my mother's friends, the ladies, to be the pallbearers. The coffin was moved on wheels, and we thought that Mom would want to be surrounded by her closest friends as she was escorted from the chapel. As they escorted Mom, the Rabbi blew the shofar...another request from my mother. She wanted a long loud shofar blast to pierce through the air and touch us all.
We walked behind the hearse and followed Mom to the grave. The Rabbi said a few words, and we lowered Mom into the ground. One by one, we followed tradition and covered her with dirt. A few more prayers, the mourners kaddish, and it was all over.
We took the limo back to the house, and there were people there. My friend H had been at the house with Megan all day, there to watch the kids, receive the food, and set things up. L (our other babysitter Christin's mother) also came over to help with the kids. My friend T and her mother, B, (and I think her sister, too), left early to get back to the house and finish getting everything ready.
We spent the afternoon eating and talking. The kids played downstairs, and it was an emotionally charged day. There was a constant stream of people in and out. Around 7:00 pm, the last wave of visitors arrived, and our friend E led a service for us. The house was full, and it was amazing to see so many familiar faces. We said Kaddish, the mourner's prayer, for my mother, and we sat surrounded by friends and family all night.
By 9:00, almost everyone had gone home. My brother, SIL and the girls decided to spend the night, and my niece M decided to stay behind with us for a few days to help out. We have been sitting and talking all night (and Maya has been refusing to sleep). I love having a full house.
Right now, it all seems surreal. I think being surrounded by so many loved ones makes it easy to forget for a little while. Tomorrow we will be holding shiva again, and I suspect the parade will continue.
All day long, friends and family took care of us - getting food, refilling the platters, washing the dishes, putting things away, tracking the gifts, etc. Thank you so much for all of your care today. I will be posting the eulogy speeches as soon as I can.
I knew yesterday morning when I woke up that it would be the day. Mom's breathing had slowed and it just felt like the end was near.
The prior night (the 27th), around 11:30 pm (just after I finished the blog), I called out a false alarm in the house. I had gone in to see my mother and give her medication. As I entered the room...her breathing seemed to just slow. She made a few choking/coughing noises and groaned a bit, and I thought she was going. Dad and DH came running, and I quickly gave her medication and repositioned her. After a few minutes, Mom's breathing seemed to slow back down again and her groaning stopped. I stayed with Mom for another 30 minutes, and decided to let her rest.
I continued to check on Mom on and off. Around 3:00 am, I headed in to the room to go to sleep. When I got to the room, Mom's breathing was labored again. I gave her more medication, and she groaned a bit. I cleaned her face, I lotioned her body, and I sat with her and talked to her for the next hour and a half. Around 4:30, she seemed to be calm and breathing steadily. I climbed into the twin bed in her room, and probably woke up every 20-30 minutes to listen to her breathing and determine if she needed any more medication.
Somewhere between 7 and 8 am, I noticed that her breathing had slowed way down...only 6-8 breaths per minute. Normal is 10-20 breaths per minute, and above 24 shows signs of distress. We were told that we could not give any more pain medication once her breathing fell below 14 breaths per minute, but I was able to give Mom more medication to prevent anxiety and to dry up her congestion. I also gave Mom more Tylenol because she had been running a fever.
Dad came in around 8:30, and we talked about how her breathing had slowed. The hospice nurse called to say she would be by in a few hours. We spent the morning as we always do...with the kids, eating breakfast, and I continually went in to check on Mom. The hospice nurse arrived around 11, and she also noted the change in Mom. We repositioned her again, and we waited.
We had several friends pop by...my friend N stopped in to drop off some pasta salad for us (she had suggested a play date, but I was worried that Mom would die while the kids were over), and my friends H and B came by to bring us lunch from Panera. The Rabbi stopped in, and then S and G and G and S, and H came by, too. Business as usual, as we waited.
I kept popping in and out to see Mom. I just felt her...slipping away. She was very calm, her breathing seemed to be slowing, and she just seemed to be getting colder. I took some time to lotion up her body and wash her face. I kept her mouth swabbed so it wouldn't be dry. I noticed that her jaw had slackened...over the past few days, she would clench it tight when I tried to swab her mouth, but yesterday, it just hung loose. A few times, I thought her breathing had stopped...it was as if time was frozen as I waited and watched. After 20-30 seconds, her breathing would again resume the slow and rhythmic labored pattern, and I didn't know if I should feel relieved or sad that she was still going.
I kept stroking her head and giving her kisses, and telling her that I loved her. My mother loved to have her back and head "tickled" - just a very soft touch. We would take turns tickling each other's backs (and we would negotiate deals...if you tickle my back for 10 minutes now while we watch tv, I'll do yours next for 10 minutes before I fall asleep). I joked that she would just have to owe me one as I tickled her back and head, and in my mind, I heard her say she'd tack it on to the others she owed me for all the times I tickled her back and head in the hospital. I told her I would miss her terribly, but I told her it was time for her to let go. I promised her we would be okay, that we would stay a family, and we would take good care of each other.
I left her room around 5:45 to go prepare dinner. Not that there was much to prepare...we had N's pasta salad, we pulled out the leftover tuna and egg salad, and DH ate leftover Thanksgiving food. Micah mostly just threw food on the floor. Every 5 minutes or so, I kept running back to check on Mom. I told her we were all eating dinner in the other room, and I told her I'd be back soon. I remember leaving the room as we sat down to eat, and I noticed that her color had...faded. She was looking quite ashen, and I kept thinking that her breathing had slowed again. It was quite shallow, and it almost seemed like more of a reflex. I laid my hand on her chest, but I could not feel her heart beating. Her pulse had been so faint all day today, so it did not surprise me, but she continued to breathe. I gave her another kiss and told her I would be back in a few.
I returned one more time to the room. I entered slowly, and waited to see if her breath was still coming. When I saw her chest rise, I moved closer to the bed. I noticed that the skin on her head looked...ashen, and little purple veins seemed to be visible, forming a geometric pattern across her forehead and skull. I kept thinking it meant something, but had no idea what. I kissed her again, and said I'd be back when dinner was finished.
About 10 minutes later, I returned to the room. I again stood in the doorway...and realized that her breathing had stopped. I moved forward to double check, and I started to cry. I kissed her goodbye, and with tears going down my face and a sob escaping, I walked back to the dining room to tell my Dad and DH. They came running....I know that I removed Mom's oxygen mask and arranged her arms, but I don't exactly know when I did that.
We called my brother. He knew when he answered the phone...I think he just picked up and asked "It's over?" I think I simply just said "yes" and we didn't say much more to each other. What was there to say? My dad called the funeral home and the hospice nurse. While we waited, I started making some phone calls...to family, to friends, to everyone. I didn't know what to say...just to say "it's over." Everyone asked if we needed anything, or if they should come. I told everyone not to come. The hospice nurse arrived shortly before 7 and pronounced Mom. She stayed for a while and took care of a few administrative things.
Naturally, several people started showing up...S and L and G and S. They helped clean and organize and just kept us company while we waited. I think it was around 8:30 or 9:00 before the funeral home arrived to take away my Mom. That was the hardest part. I was worrying about her being cold and alone. I hated to send her away. We said our goodbyes, and even the funeral home attendants were crying. I can't believe my mother was in the room alone when she died. I hope that she wasn't scared or in pain, and I hope that she knew we were here with her and that we all love her so much.
We've been working on arrangements since last night. Today my father and I went to the funeral home, and here I sit...waiting and waiting. We are having trouble thinking of logistics, and I keep wanting to ask my mother for her input. Silly, right?
I cannot believe we are going through this. Thank you all for your kind words and support.
At 6:15 pm tonight, Mom passed away. All I can say is goodbye, sunshine, I will miss you forever. I love you with all my heart, and we just didn't get enough time together. I have been so lucky to have you in my life - this world was better for every minute you spent here. This world will never be the same again without you, and I hope one day to have as good a relationship with my children as you have had with yours. Thank you for teaching me how to love and how to fight and how to live. Thank you for loving me, for being there to cheer me on, to boost me up, and to believe in me. You have been my anchor, kept me from feeling lost and adrift in this crazy world. I'm already lonely without you.
No real updates...but for some reason, I feel compelled to write. Maybe it is because I don't exactly know what to do with myself, and maybe it is because I suspect so many of you are out there sitting on edge, waiting and wondering, too. It helps, knowing that people out there care.
Today would have been a typical day in the household...if not for the fact we are waiting. Maya actually slept in her crib last night (well, in the car seat in her crib). She woke up around 8:00 am, and I grabbed her to bring her into bed to nurse. Actually, when I walked into her room, my heart stopped for a moment...she was jammed in the bottom of the bundle me, out of her car seat and caught between the car seat and the crib. All of the horror stories about children dying of strangulation in their cribs flashed through my mind, and I raced over to make sure she was okay. There she was, smiling and cooing, and doing just fine. Naturally, my next set of thoughts were ways to kill DH, especially since I'd asked him before he put her in the crib if she was buckled into the seat.
I took Maya back to the bedroom and decided to kill DH later. Mom was sleeping peacefully. I nursed Maya, and heard Micah wake up. I went in to wake DH, yell at him about the car seat (he claims he misunderstood and thought strapping her into the seat was more dangerous), and ask him to help with the kids.
Our morning was fairly run-of-the mill - Micah threw cereal on the floor, Maya dozed on the bed after nursing, and I gave Mom her medications and moved her a bit. I needed to do a few things to get ready for the day, so I asked DH to sit with Maya while I went about my business.
I cleaned a few things, did some organizing, got dressed, answered some calls, and made appointments with the hospice caregivers. My Dad was out running errands while DH napped with Maya. My parents' neighbors came by this morning to bring some turkey soup. We haven't tried it yet, but DH is planning to eat it for lunch tomorrow. Thank you so much for thinking of us and coming by to visit.
The social worker arrived next. She was quite kind and helpful, and she talked about the different family resources hospice provides. My father arrived home during our meeting and joined us. She stayed for about an hour, and then she left. A short while later, the nurse from hospice came to see my mother. This nurse was a bit...cold. She did not talk to Mom at all before touching her, but she did try to provide us with some helpful information. While she was wrapping up, the home health aide arrived to give Mom a bath. She took care of Mom, helped reposition her, and then she left.
We had a quiet afternoon. My friend L came over and brought lunch (bagels, tuna, egg salad) and then we went for a walk. When we returned, everyone was napping! L left, and I tried to take advantage of the quiet...but of course the kids woke up a few minutes later. I played with the kids and tried to get a few things done around the house. I went in to spend time with my mother, too.
In the late afternoon, S and L, S and J, and R and E arrived. We all sat and chatted a bit, and the ladies got to work helping me clean up the kitchen. I have to say, their help was amazing! We can find things in the drawers, the kitchen table is finally cleared off, I have counter space again (although I still hope to clear off a few more things), and my life is feeling a bit more ordered. I truly hate all the chaos in the house, and really just need a few days to put everything in order.
While they were helping, my friend B brought over dinner - spinach salad, split pea soup, and macaroni and cheese. B is a friend from the past...I met her when I was in 9th grade at a youth group convention. I was a member of a failing chapter, and we were thinking of folding the chapter and either joining another one...or just dropping out of the youth group altogether. I sat at her table at lunch (and today, I actually found out it was no accident). I had no idea that she was the Regional President. We just talked...and next thing you know, I'm deciding to become chapter president and rebuild it. That night, at an event called "Lifetime," the senior girls who held office on the council/regional level were honored. They talk about their time in the youth group, tell stories, but most importantly, they give a twig representing their past to someone who got them started, a twig representing their present to the people most influencing their present, and a twig representing their future to someone they believe will go far in the group. B gave me her future that night...and it changed the course of my youth group experience for me. I ran for President of my chapter, rebuilt it into one of the strongest chapters in the council, and then later became the Council Vice President and President. I can directly thank B for inspiring all of that, and it made a huge difference in my life. When I gave Council life 3 years later, I gave my past to B...even though she wasn't there to receive it. Over the years, we've run into each other on and off, but we never really kept in touch through any regular means. She always meant a lot to me...just the mention of her name could bring a smile to my face. I think we all have people like that in our lives...someone that just means something to us. Through Facebook, B and I reconnected. We comment on each others' statuses, we have exchanged notes, and today, B brought food and support to comfort me through a difficult time. B, I cannot even begin to tell you how much that means to me...and how much your friendship has influenced my life. So, thank you. I look forward to getting reacquainted with you.
S, S and E served us dinner at 6:00, and it was a wonderful dinner. By 7:00, they all said their goodbyes and headed out for dinner together. After dinner, my father watched tv downstairs for a bit. Around 8:15, we started the process of putting the kids to sleep. E took care of Micah, and my father helped me bathe Maya. I nursed her to sleep, and then I tried to transfer her into her crib. Naturally, the screaming ensued. I'm getting so frustrated that Maya won't sleep on her own anymore. I'm really hating this phase, and I do not know how to break her of the habit.
Krystal came by as dinner was wrapping up. She just wanted to see Mom. She was so kind - and it was wonderful to see her again. I had hoped Krystal would be here with us for a long time. I know she will be in our lives forever...and I know that Mom wanted us to celebrate Chanukah with her. So, when the time comes, we're going to have a Chanukah celebration with Krystal and her son.
We tried putting her back in the car seat, and we let her cry for over 30 minutes. Finally, DH decided to take her for a ride in the car. He came back around 10:30 with a sleeping baby, and she is currently in the car seat in the crib (properly buckled in this time). I'm hoping she'll sleep until morning. I think my goal is to get her sleeping at a normal time at night and on her own (not in my arms) for the next few days, and then we'll work on getting her to sleep in the crib without the car seat, and THEN we'll work on getting her to sleep while she is awake but drowsy. One battle at a time, right? I think establishing the habit of an earlier bedtime and sleeping alone should be the first priority, however we get her sleeping.
We are now here sitting and watching the news. I'll head back shortly to check on my Mom, and probably reposition her and give her more medications. I lotioned her up earlier this evening (her skin felt so dry, and I know she always feels itchy when her skin is dry). We gave her some Tylenol because she has a fever, I took off her covers so she could cool down, and I changed her pajama top to a sleeveless shirt. I also used the Albolene on her face, swabbed her mouth, and put the special cream on her head for the radiation itching. Her breathing was slow and steady the last time I checked in on her. I also stopped for a brief conversation...I'm not sure if she can hear me, but I wanted to talk to her about my day. I miss her laugh, and I miss our chats, and I'm just missing my Mom. Maybe that is what drove me here tonight to write.
I know so many are waiting and wondering what is happening here...and I honestly do not have much to report. Mom is still with us. She seems to be resting comfortably, but her breathing has been more labored today.
This morning, my Mom's friend A showed up with bagels and cream cheese for us - it was a wonderful surprise! She stayed for a bit to help clean up and do whatever she could around the house - she fixed our plants, watered them, did some dishes - it was a huge help. She seemed to be in the same mode as me...I am feeling so out of control in my life that the only thing I can do to exert any control is clean and organize. I cleaned my room, I organized my mother's room, I worked on the bathroom, and I attacked the mess in Maya's room. I also managed to get a shower today, too. I have a long way to go before I actually have the house in order, but I feel a bit less stressed now that my environment is more organized.
As A was getting ready to leave, we had a visit from the home hospice nurse. She arranged for an increased dosage of pain medication (which also helps with her breathing), and she added two additional medications for us - one to help alleviate any anxiety and relax the body (if she is aware), and one to reduce her congestion. The changes in medication seem to be helping - she has been resting comfortably once again, and her breathing has slowed again with the medication.
We had a series of calls from friends and family, and a few more visitors - our cousins, S and L, and then later tonight S and J. The hospice chaplain (Rabbi) stopped by to talk to Dad and DH and say a misheberach (blessing) for Mom. We were supposed to have two other visitors...S and G. Unfortunately, they detoured to the hospital. G is staying there over night, and we still have no word on what happened. We are thinking of them tonight, and hope that he is feeling much better.
We had a quiet dinner of leftovers, and Micah went to bed fairly easily. Maya, however, is being a little stinker. I nursed her, got her into her crib...and 20 minutes later she woke up crying. She is currently curled up on her Goppy's lap watching tv and grinning from ear to ear.
I went back to move Mom again a little while ago. She groaned loudly when I shifted her to her back. She coughed a bit, and seemed quite uncomfortable. I wonder if it was just a reflex, or if she was actually feeling/hearing. I then moved her to her other side, and she seems to be more comfortable again. Today I did our Albolene and lotion routine again, and I made sure to grease up her arms and legs, too. I hope she can feel me washing her face - she always tells me that she loves when I get my hands on her.
So...quiet evening. I will update when I can, but I just wanted to let everyone know that there really isn't anything to know. All the doctors and nurses have been telling us either hours or maybe days.
I guess we are in a holding pattern. Mom's breathing is stable, she is resting comfortably, but she is non-responsive. I think this part is perhaps the hardest thing we've been through yet. We know Mom is gone...and yet, she isn't truly gone. We are talking about funerals and death and trying to think "what next"...but it is not quite time to move forward.
Mom was quiet overnight. I ended up sleeping with Maya in the room with Mom, Dad took our bed, and DH took the couch. I think Dad wanted to stay in the room, but each little sound sent him running back out to ask if she was okay. I was able to sleep...I woke when Mom's sound patterns changed and I could check on her throughout the night.
This morning, the house was relatively quiet. Micah woke up at 5 and at 7 screaming...DH might have forgotten to give him his reflux medication before bed. I woke up around 8:00 and DH, Micah and my Dad were still sleeping. I uncovered Mom, and then decided to do our daily face cleansing routine. I wiped her face with Albolene, then used some lotion on her face. She seemed to relax as I cleaned her face. I repositioned her and then started our day.
Around 9:30, the hospice nurse came by to admit Mom into the program. She was quite kind and helpful and she helped me reposition Mom in bed. We went over their services, different medications and when to use them, and we talked about their procedures.
A little later, friends came by with some food for us for Thanksgiving. We had a great visit with them, and we were so appreciative of the meal. After their visit, my father ran out and Micah, Maya, DH and I took a nap.
We received tons of calls and messages today...thank you to everyone for your words of support. We have been sitting back and quiet because we just do not know what to say. We are waiting. We are in limbo...sometimes it feels like every other day, and sometimes we sit here at a loss and crying. We don't exactly know what to do with ourselves during this time.
Ultimately, my brother, SIL and the girls went to Thanksgiving dinner at a family friend's house. We just did not think it was right for the girls to be here right now. It is one of the few times we have not all spent Thanksgiving together. I know that we plan to do our own Thanksgiving with our own family food and traditions in a few weeks, but it felt strange to be separated for Thanksgiving. DH decided to take Micah up to our cousins farm for a few hours to try and give him a touch of normalcy. He had a fabulous time, and came back with lots of leftovers.
Dad and I stayed in and ate the dinner brought for us. It was a bit sad for us...we know how much Mom had been looking forward to our annual trip to the farm. You see, our cousins finally built a house! For almost 20 years, they have been living in an apartment above a barn, and this was the first Thanksgiving we were going to spend in their new house. My mom was doubly excited because it is a wheelchair accessible house, and she knew she could go and relax and even use the bathroom there. My father and I were sad that we couldn't make it to the farm...and even sadder that my Mom will never get there.
Even if we could have found someone to sit with Mom...we didn't want her to be away from us. Even more than that, my father and I didn't think we could handle the questions. So, my father and I ate dinner, sat with Maya, and we talked. We talked about the past, and we talked about our future. We are about to embark on a huge life change, and I think we are both a bit uncertain about lies ahead.
It is so hard for me to feel thankful today...how can I be thankful when I am losing my mother? I am trying to be thankful for our precious relationship, and I am certainly thankful for all the support our friends and family have shown during this difficult time. I am thankful that so many people care about us, and I know that your strength, love and support will get us through these next weeks. I am also thankful for my beautiful children and for DH, and I know that I'm lucky to have my brother, father, and nieces to hang onto during this time. I am not, however, thankful that Maya is still awake and grinning at me at 9:37 pm. Try as I might, I just cannot get that child to sleep unless she is cuddled on top of me.
We will keep you posted...but for now, we are just in limbo...watching and waiting.
My brother is not one for posting much...but I thought I'd copy his Facebook status and share it here:
I am thankful for the 33 years together with her, for the lessons she taught me, for the love she showed, for the honesty she gave, for the clarity she offered, for guidance she provided, for the support when no one else cared, for the smiles, for the hugs, for the comfort. I am just plain thankful that I got so much time with her and I am so sad I don't get more. I love you mom.
We're home. It has been a long, emotionally draining day, but we're home. All of us.
My father and I received a phone call this morning at 8:00 am from Mom's doctor. He told us that Mom was non-responsive, and that her pupils were no longer reactive. We told him we were on our way. Dad and I threw on clothes, called my brother, and I think we were at the hospital by 8:30. My brother arrived a little after 9:00, and DH and Maya came later.
When we got there, it was clearly not good news. Mom was just...kind of gone. Yesterday, she was moving, responding, looking at us, paying attention, but today...nothing. Well, perhaps I shouldn't say nothing. She had visitors in and out all day. The phone rang, too, and we put a number of people on speaker phone to try and talk to Mom (SIL and the girls, my cousin, and an old family friend). At times, it seemed like she was responding to a few people both on the phone and in person...she would fidget, she would try to move her mouth, and a few times she made some grunting sounds. I think each time she was trying to say she could hear, that she loved them. I've decided to believe that she could hear us all, that she knows how we feel and heard what we said. I read all of your messages from the blog, and will continue to read them over the days to come.
It was a long arduous day. We ended up sending Mom for an MRI this afternoon to try and figure out what had happened. It turned out, Mom either had a second stroke, or the initial stroke spread dramatically. The entire pontine region was affected, and I think we were told her brain stem as well. Ultimately, it means that there is no chance for any kind of a recovery.
After we received the MRI results, we decided to make a tough decision. No more. No more needles, no more drugs, no more tubes, no more tests, no more pain, no more discomfort. No more. We decided to bring Mom home. We asked the social worker to start coordinating with hospice, and we told them to make it happen today.
We asked about her pain/comfort level, and we decided to figure out what was keeping her comfortable and what she needed. We decided to discontinue all of her medications, except for her pain medications. We stopped the antibiotic, we stopped her blood pressure medication, and we stopped her anti-seizure medication. The hardest medication (for me) to stop was her steroid, which reduces brain inflammation from the tumor. I know that when she goes more than 12 hours without it, she normally gets a headache, and it can quickly escalate into nausea and vomiting. I don't want her to experience any pain at all, but I don't want to give her anything to prolong this either. I am hoping that because she is already in a coma that any increased brain swelling from stopping the steroids will go...unnoticed by her body. If she does have pain, we can always give her morphine...and we can always ask for a new prescription for the steroids.
It took a while to arrange the discharge/hospice plan. Mom has been on oxygen all day today...15 litres. We had to wean her to 10 litres in order to bring her home. DH had left around 4:30 to get home in time for Megan to leave, and he was waiting for delivery of Mom's oxygen tank. As is no surprise, they made a mistake in the order, and only delivered a 5 litre compressor. It was a long complicated mess to correct the problem. My brother left around 7:30, and he took some time to say his goodbyes. Finally, a little after 8:00, we were able to bring Mom home.
Dad took Maya and drove the car, and I rode in the ambulance with Mom. We brought Mom home at 9:00 tonight. The hospice nurse arrived shortly thereafter, and gave us some advice and tips. Mom has been resting comfortably for the past few hours. We've each taken some time to go in and say our goodbyes.
When I was talking to Mom, she opened her eyes, moved her mouth, and started making loud noises. I have to believe she was telling me she loves me.
Tonight, I'm angry again. I feel cheated...I think my Mom has been cheated, my children have been cheated, my brother and his girls have been cheated, and my father has been cheated. I cannot believe that we finally succeeded in getting my mom through radiation, chemo and home, that we managed to get this tumor smaller, that Mom was stronger, only to have these strokes, unrelated to the tumor, take Mom out. My brother kept saying it was like someone just doesn't want her to win.
It just isn't right and it isn't fair. I was coming to terms with the fact that cancer was going to kill my mother far too young. From the shape of Mom's tumor, the cancer would easily have given her 6-9 months, and possibly longer than that. Even with the first stroke, I think I left the hospital last night believing that maybe, just maybe, that stroke was our "miracle" - our blessing in disguise. Mom was moving her left side, and I thought that with a few weeks of rehab, we might really get her standing and walking again. I thought Mom was going to be BETTER than pre-stroke. I thought that perhaps all of this was happening so that she could have more time, quality time, time to spend with her family.
I think my optimism made today that much harder for me. This stroke came out of the blue. We had passed the danger time frame...all we had heard was that if we got my mom through radiation and chemo, there was no reason to think we wouldn't have at least 6-9 months. And as the early scans came back, as the doctors grew excited, we started to believe that she would beat the odds and be around even longer than expected. We just knew Mom's fighting spirit would triumph longer than expected.
After my initial panic that she was dying, I thought that she was going to rise above this and prove them all wrong once again. To wake up today to have my mother taken from me once again...well, I have to admit it was almost as awful as the day we learned she had a GBM. It was as if the wind was knocked out of me, once again.
Tomorrow, Thanksgiving, is exactly 3 months from Mom's surgery...and 3 months and 4 days from when we admitted her to the hospital. We went through all that hell...for fourteen days at home together. Fourteen days. She did have several months to see old friends, and we had a beautiful break fast celebration and a perfect 65th birthday party. But we only got 14 days together at home. I'm stunned...I was sure we would have months. I was hoping we'd even have a year or more. But I was sure we'd have the holidays and into next year.
So, I guess I'm just stunned. Mom is home, she is resting comfortably...and I guess we're all just waiting for the end. I hope it comes peacefully for her. I hope she knows she is loved. And I hope that she does not suffer another moment. I hope for all of our sakes that this misery does not drag on too long...and I am dreading the day when she is truly gone from my life. I lost my mother Memorial Day Weekend and I didn't even know it...and it took 6 months for this to run its course. Six months. So long...and yet not nearly long enough.
I have to work on saying goodbye to my sunshine. I love you, Mom, and I will miss you forever.
I don't have the time or the heart for eloquence today. My mother took a turn for the worse overnight. She has likely suffered either a brain stem bleed or a new stroke. We are waiting for an MRI to confirm. Ultimately, it is not good news and the prognosis is poor. She is on oxygen and is no longer responsive. We were told to rush to the hospital today, and we suspect time is running short. My heart is breaking...I do not wish my mother to suffer another moment, but I don't want to have to learn to live in a world without her.
The last 24 hours have been a challenge. Around 4:00 am, Mom sort of "woke up" for a bit...she was agitated, wanted something, and could not speak. It dawned on us that she can spell...so we cycled through the alphabet and she nodded at the letters to spell what she wanted to say. I have to say, I thought she was trying to communicate something monumental...that she loved us, that she didn't want the treatments to continue...something. Turns out, she spelled "H-O-T." Dad, my brother and I actually laughed when we realized what she was saying. We did our best to help cool her down, and she went back to resting.
Since Mom was looking stable and alert, and since we were told she would not get a room until the next afternoon, we decided to work out "shifts" so we could get some rest. Dad wanted to stay, and I desperately needed to get home and pump because I was so uncomfortable, so my brother and I left around 5:00 am.
We woke up around 8:15, and I think it took us another hour to get out the door (the phone was ringing, we had the kids here, I had to gather a few things). My brother and I were back at the hospital by 9:30, DH joined us, and Mom was still in the ER. She was very sleepy, and not as interactive as when we left at 5:00 am.
Mom was trying to communicate again...this time, she wanted a pen. We tried giving her one to write, but she was not yet able to hold a pen and write (since it is her right side affected). She was clearly frustrated. She finally was able to tell me that she had a headache and was nauseated, and it dawned on me that she had not yet had any of her steroids since 11:00 the prior evening. I also realized she had missed her morning dosage of her anti-seizure medication. I went out to talk to her nurse...and she said "oh, those medications were written up for oral administration, and since she can't swallow I didn't give them to her."
Naturally, I went ballistic. I was infuriated that they would withhold medication from a woman with brain cancer, especially, the medication that was keeping her safe and pain-free. They initially ignored me, but I was quite insistent...and eventually had the nurse manager, a patient advocate and a few others scurrying around to correct the problem. I made it quite clear that this was a huge error that was tantamount to negligence, and that they were causing HARM. My mother keeps saying that the medical oath includes the phrase "First do no harm" and yet all of these medical professionals continually seem to do harm by ignoring and being careless.
Once they gave Mom her meds, I felt much better. Somewhere in the middle of the hoopla, DH took Dad home to rest, and my brother and I stayed with Mom. One of the fellows from the stroke team came by...and he was terrible. He barely spoke two words of English, and he was unable to answer any of our questions. Luckily, I have a friend who is a neurologist, and DH faxed her Mom's MRI scan, and she called back with more specific information.
As we have learned, Mom's stroke was relatively small, but it is in an area of the brain called the pontine region. The pontine region is sort of the "traffic cop" for the movement on the right side, and for the facial/throat muscles that are needed for speaking and swallowing. The language center is unaffected, so right now Mom can understand, she knows what she wants to say, but she is unable to make her muscles cooperate to allow her to speak. In patients without brain cancer, these types of strokes are usually highly responsive to rehab. Unfortunately, because of all my mother has been through, we just cannot predict how she will respond.
Ironically, the "best" news of the MRI was my mother's tumor. It really has shrunk significantly and the swelling has dramatically decreased. The midline shift has greatly reduced, and the ventricle had re-inflated. This is much more than we were told to expect only one month post surgery and radiation, so from a cancer perspective, Mom is in good shape right now.
She will need speech, physical therapy and occupational therapy, but the most important component will likely be speech. We need to teach her how to re-route the control function, and then she should be able to speak and swallow again. We will know in another day or two how quickly she is recovering. She will need to do several swallow tests over the next few days, and they may need to start giving her some nutrition through a feeding tube. That is definitely a touchy situation...we really hate the idea of a feeding tube, but our expectation right now is that the tube is just a temporary solution until we can get Mom swallowing again on her own. It may be possible to avoid the tube altogether if Mom can pass her swallow test.
It was after 1:00 pm before we finally had a room. My brother and I had complained about the earlier visit from the stroke fellow, and the stroke nurse coordinator was there to meet with us. She was lovely, and we requested that we see a different doctor with better patient communication skills, and she told us the doctor would be by in the afternoon.
As Mom was transferred to her room, SIL arrived. She had dropped the girls off at our house to play with Micah while she came for a visit. She was there for a few hours before heading home (and unfortunately got caught in terrible rush hour traffic). Mom is actually in a great room, and her nurses are quite kind. After we got our room, the visitors started to arrive. Mom was aware that everyone was there, but she was very sleepy. She was still communicating that she was uncomfortable, and we tried over and over again to adjust her position. Her left leg and arm are actually moving quite well - somehow, since she is unable to use the right due to the stroke, she seems to have re-discovered her left side again.
As promised, the neurologist came by in the afternoon. He did another full background and an examination of Mom, and he was quite kind with her and he took a long time to talk to us. My father had just returned to the hospital, so we were all there. While he was reluctant to promise anything, he did give us better information. He agreed with my friend's assessment that these strokes are usually responsive to rehab, but we just have to see what is happening with my Mom. He talked to us about the treatment plan - they do expect Mom to be in the hospital until next week sometime. He will be sending a speech language pathologist in and the rehab doctor for their evaluations and recommendations, too. Our first goal is to work on the swallowing and try to get her eating again, hopefully on her own. We do not yet know if Mom will go to an acute rehab or a sub-acute rehab - it all depends on how awake she is and able to cooperate with treatment. He even gave us hope that perhaps she could walk with a walker again...especially since she now is able to use her left arm and leg.
After seeing the neurologist, we also got a call from Mom's oncologist. He was very sorry to hear about Mom, and he said that he had looked at the scans and the results, and he thought the whole thing was "weird." I gave him my version of the story (again), and he kept asking me if Mom had a drop in blood pressure. According to him, this stroke was not caused by the cancer. It is in a different, unrelated and unconnected region. He also said there is no evidence of a clot or a bleed, and while most doctors presume it was caused by a clot, he thinks that would be unlikely given Mom's low platelet count. He feels that Mom's stroke was caused by a lack of profusion (blood flow) to her brain, and he thinks that Mom either had an allergic reaction to the medication or to the platelets (platelet transfusions can cause reactions, which is why they give benadryl along with the platelets). He thinks that while Mom was having the reaction, Mom's blood pressure dropped dramatically and caused the stroke. He also said it could turn out to be "good news" in that it may be more of an ischemic attack than a true stroke, which would mean that the effects could be more temporary and resolve a bit faster. I guess we'll just have to see how this unfolds.
Mom's friend drove me home a little after 6, and my brother left at the same time. I came home, dealt with dinner and bed for the children...and then I fell asleep on the couch. My father came home around 11, and he went to sleep. My mother is by herself at the hospital. We decided not to get an aide because the care ratio there is good, and frankly, there isn't much an aide can/will do for her. I think Mom would be more frustrated that there is someone there with whom she cannot communicate. I hope they check on her frequently throughout the night, and I hope that she is able to communicate what she needs. We'll all be headed back in the morning, and we'll see how the night went.
I will update again as soon as I can. I did read the blog messages yesterday and some of the blog - Mom is still able to listen, so your words of encouragement will help a lot right now.
I'm an attorney and policy consultant, and DH is a consultant to nonprofit organizations. We met at a Superbowl Party in 2005, got engaged the following year, and we were married in November 2006. We had a long and rocky road before finally welcoming our first baby, Micah, into this world on December 14, 2008.