AIMEE'S BULLETIN
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Aimee's Story
Submitted with love,
by Abigail Sandler
January 8, 2011
My beloved sister, Aimee (Aimee Golda Sandler), was born, September 11, 1956, the baby of five children born to our parents, Sidney and Marilyn. Aimee’s birth was much anticipated, especially by me, as I was just six, surrounded by three particularly rambunctious brothers, so the idea of having a my own real live, baby sister to love, and play with was absolutely the most exciting thing to happen to me at the time.
Aimee’s Early Life
As a result of Aimee’s Neuro-Tubular disorder the first three years of her life were pretty much spent in and out of hospitals, undergoing surgical procedures, and receiving lots of specialized care. One summer Aimee was flown, to Boston’s Children’s Hospital for an extended stay, for treatment. Nothing about our lives, or childhood, was normal.
Aimee and I shared a bedroom, so the changes of her dressings and bandages, and everything that surrounded her care, were very much a part of my young daily life. Some of my early memories include getting called into my elementary school Principal’s office to be told that Aimee had survived yet another surgery; spending Sunday afternoons in the hospital waiting room with my brothers; and numerous visits to Aimee’s doctors. Most of my earliest memories revolve around Aimee, her care, embracing how medically fragile she was, and enjoying my little sister. Fortunately, I always saw and experienced Aimee as normal - taking her on the bus to school, going to the mall, shopping - all the things sisters do with sisters. I never saw Aimee’s disabilities, I didn’t see the people looking at us, in the mall, or restaurant, she was just Aimee, my little sister.
Fifty some years ago, Aimee received one of the first shunts, a relatively new procedure at the time. The shunt, and the shunt revisions that followed were performed in order to reduce the intracranial pressure, which eventually caused Aimee to endure a lifetime of medically challenging events, and the slow deterioration of her mental and physical capabilities.
Aimee had an infectious smile, a fabulous sense of humor, and an amazing memory. I’ve often shared that out of the five of us kids, Aimee clearly would have been the brightest, had she not been medically challenged. Aimee would memorize entire skits from the I Love Lucy, T.V. Show, (Hello friends, I'm your Vitameatavegamin girl. Are you tired? Rundown? Listless? Do you poop out at parties?) numerous TV commercials,
(reciting the ‘N-E-S-T-L-E-S, Nestles makes the very best’ … ‘Chocolate) word for word, and Aimee even knew the Pythagorean theorem, - really - she could recite it. Aimee told jokes, made everyone laugh, told them that they looked like they belonged in Vogue Magazine, and always brought a smile to everyone's face, with her infectious smile.
Aimee was able to write, do simple arithmetic, probably second grade level, and sew, yes - sew. Aimee did embroidery, cross-stitching, with assistance, and I have a beautiful table cloth, created by Aimee, with her favorite color, red, for the thread color.
Aimee loved to eat, with a particular fondness for anything chocolate - ice cream, pudding, and her all time favorite, chocolate chip cookies. My visits with Aimee “always” included something chocolate, and feeding Aimee became an activity we were able to share, together, and as the years passed.
Aimee loved music, it was part of her soul, her being, her special way of connecting, and you couldn’t help but chime in when Aimee was singing one of her songs, and she had quite a collection of melodies. Just to share some of Aimee’s all time favorites:
Sunrise, Sunset, Hava Naglia, Frere Jacques, Supercalifragilisticexpialidocious, A Spoon Full of Sugar, Chim Chim Cher-ee, I’ve Been Working on the Railroad, Oh, Susanna, Old MacDonald, and Short’nin’ Bread
There was a song, back in the day, sung by Ray Bolger, called, Once in Love with Aimee, always in Love with Aimee, and it was true, to know Aimee, was to love Aimee.
Aimee also loved the water, didn't matter if it was a bath, pool, or the ocean, I think it provided Aimee with a freedom of movement that she couldn't otherwise experience, especially as the years went by. I remember a little something that we shared for years, and somehow it also stuck with Aimee. I would say, "Eat a Peach, and We'll Go to the Beach," and it never failed. I'd say, Eat a Peach, and Aimee would chime in, "and We'll Go To the Beach
Also once, Aimee caught a little fish right in her hand, at the shore, and she never forgot that, either.
To give you an accurate sense of the depth of our relationship, mine and Aimee’s, almost 29 years ago, at Aimee’s Initial Guardianship hearing, Aimee said, unsolicited by the Judge, that “she was glad she has a sister, without her sister, she would be very sad.”
Aimee’s Living Arrangements
Aimee lived at our family home until age eleven, attending a Special Education Class in the Philadelphia School System.
From the time I was 10, and Aimee was 4, all five of us kids were living with our father, who had sole custody of us, after our mother left the family. Our mother sat us down one morning, told us she was leaving, sent us to school, and when we got home that day, she had moved out of our family home, pretty much leaving us to fend for ourselves. My father did his best to provide for us, after our mother left, he was heartbroken, and never really the same, and then there was a series of housekeepers, that came and went. We were living a grown-up adult life, as children, as the only other girl, I was helping to take care of, Aimee, bathing, dressing, helping her, one child taking care of another child with very specific needs.
When I had just turned 17, and Aimee was 11 years of age, our father died, suddenly, in his sleep, without warning.
Over the next several years, Aimee had several placements in a number of Group Homes within Montgomery County, all with their own unique and challenging issues, eventually settling into the Lynch Homes where she spent 14 years.
By this time, Aimee, was profoundly developmental and physically handicapped, and as she neared the end of her life she was pretty much nonverbal. Of course, if I kept repeating something, such as “Aimee, would you like a chocolate chip cookie?”, a half a dozen or more times, I could almost always get a big smile, and a yes, or she’d just open her mouth, awaiting the cookie, or spoonful of chocolate ice cream.
Medical Challenges and Decisions
In the Spring of 2006, Aimee had stopped eating, which resulted in a ten-day hospitalization. In spite of dozens of diagnostic tests nothing could be found to indicate why Aimee had pretty much stopped eating - at least no explanation, that was communicated to me. Finally, as a last resort, a shunt revision (a neurosurgical procedure) was performed, with no real hopes of it making a difference, but something we felt worth trying. Aimee did go back to eating, to some degree, for 2 short weeks.
Then Aimee was back in the hospital, once again with no clear treatment plan, or diagnosis. Even I, as, Aimee’s sister, who could most times get a response, or get her to take her medicine, was completely challenged beyond what I had ever experienced. Aimee had a Central I.V. line going into her groin, because she had so many I.V.s over the years and there was no other way to get an I.V. line in. I would get to the hospital at 6:30 AM every morning so I wouldn’t miss any of her doctors, and stayed in constant communication with all of her doctors. Aimee had a tremor in one hand, and with the other she was constantly trying to pull out her central line. It would take me 10-15 minutes to get Aimee to take her medication, if I was lucky, the nurses had pretty much given up even trying. I would mix her medications in with her favorite chocolate ice cream, and she would spit it out, and I would spoon it back in, pretty much like you do with a baby, until I could get as much as I could into her.
All of Aimee’s treating doctors agreed that continued care was futile. I agreed as well, we didn’t want Aimee to suffer any more than she had her entire life, we just wanted her to be comfortable. It seemed clear that Aimee didn’t want to eat, we didn’t want to force her, and it appeared that her body was choosing to shut down.
We were blessed to have been introduced to Abington Hospital’s, fabulous, loving and compassionate, Palliative Care Team, who embraced us, and explained Aimee’s options to us. We decided we wanted Aimee to receive “Comfort Care,” that no heroic efforts would be made, no feeding-tubes, ventilators, etc. While he had made this decision with great care and expert advice, we were stunned when Aimee’s Group Home Provider, The Lynch Homes insisted that Aimee have a feeding tube inserted, and would not allow Aimee to return to her home of 14 years without a feeding tube. We retained an attorney, at the suggestion of the very astute, supportive Palliative Care Team, and went before a committee, and the Chief of Bio-Ethics of the hospital.
Aimee’s Group Home Provider, The Lynch Homes, based their decision upon their interpretation of a Bulletin, Act #28, effective 11-30-98, issued by the Department of Public Welfare. They believed was within their right, in fact, their responsibility, to insist and ensure that Aimee had a feeding tube inserted. Bottom line, we won that debate with the hospital’s Bio-Ethics Committee.
We prevailed, and were told we were the first family in more than 10 years who won that argument, with that provider, The Lynch Homes, concerning end-of-life decisions for a Special Needs Individual. All of the other families, over the previous years went along with the Group Home Provider’s insistence, believing they had no other options.
A Mystery Solved
As a result of our battle with Lynch Homes, Aimee had no place to live or die; nobody would accept Aimee, until Gail Inderwies, RN BSN MBA, Founder, and Executive Director of Keystone Hospice, in Wyndmoor, PA, agreed to accept Aimee as a patient. Shortly after Aimee arrived at the hospice, they began treating Aimee for pain, as well as instituting antibiotic treatment. The hospice had the experience necessary, and had worked with non-verbal children, so they knew how to address pain in non-verbal children, and their excellent instincts and training made all the difference.
I came to feed Aimee breakfast and lunch every day, 7 days a week, ultimately for almost 3 months, and in a relatively short period of time, Aimee began to eat. I would order her everything on the menu that I thought she might like, and never forcing her to eat just followed her lead, as always.
I immediately started to aggressively advocate for Aimee’s right to a “new” Group Home Provider, since Aimee was clearly no longer a hospice candidate.
Even though Aimee was now eating, Aimee’s Group Provider, The Lynch Homes, still refused to take Aimee back without a feeding tube.
The good news, and yes there is good news, Aimee left Keystone Hospice very much “ALIVE.”
I was able to locate a new group home provider, and plans were put into motion to transfer Aimee from Keystone Hospice to her New Group Home Provider. The State facilitated that move and partnered with me to address the issues that arose with Aimee’s old group home provider’s clear misinterpretation of Act #28, dated 11-30-98.
The day before Aimee was being transferred from Keystone Hospice to her new and improved Group Home Provider’s home, we found the missing medical piece of the puzzle, the cause for why Aimee had stopped eating.
As I was sitting, going through a mammoth pile of Aimee’s medical records, answering all kinds of medical questions, the day before Aimee left hospice, Aimee’s new group home nurse, Linda Martin, RN, found an ultra-sound of Aimee’s belly, done prior to her entering hospice care. The results of that ultra-sound had been communicated, documented, and signed off on, between Aimee’s treating doctor, and The Lynch Home’s nursing staff, clearly revealing Aimee had Gallbladder disease. The result of that test had never been communicated to me during the hospitalization prior to Aimee entering Hospice. When confronted, the actual day Aimee underwent surgery for her severe, chronic Gallbladder inflammation, (Cholecystectomy, Chronic Cholecystitis with Cholelithiasis tissue) Aimee’s treating doctor, who I bumped into in the hallway of the hospital, who had provided Aimee’s care for The Lynch Homes said, “Oh, we knew that, everyone at the group home has gallstones,” as if “all” special needs individuals have gallstones, with a so what, big deal attitude.
Now keep in mind, I was at Aimee’s bedside everyday during each of her two hospitalizations, as to not miss any of her doctors, or a drop of information. The Nursing Director of The Lynch Homes, Lynn Lynch, R.N., had a copy of that ultra-sound, as did Aimee’s treating doctor. The report was in Aimee’s hospital chart, but not a single member of Aimee’s vast medical team ever put two and two together, not even the Gastroenterologist that was brought in for a consultation. In retrospect, a medical student could have diagnosed Aimee’s symptoms, but there wasn’t an effort to coordinate medical specialties, let alone share with me, the results of that vital missing piece of the puzzle. It just so happens that we have gallbladder disease in our family, Aimee’s mother, uncle and maternal grandmother, all suffered from gallbladder disease.
Nobody took the time to ask the right questions, it was easier to take one look at a severely impaired person, and write them off, especially one that didn’t physically respond to pain, like you or I. We can only imagine the pain that Aimee was in, and God only knows for how long, since there were other periods of time that Aimee had rejected food. It appears it was much easier to call Aimee’s not wanting to eat, a behavior issue, initially, than what it was, full blown, documented, Gallbladder disease, or acute Gallbladder attack.
As you can imagine, I had a much different reaction to the fact that Aimee had Gallbladder disease. I immediately brought the ultra-sound study to the attention of the Director of the Hospice, and we took action. I scheduled a nuclear gallbladder study, which confirmed Aimee had severe, chronic gallbladder disease, and her gallbladder was completely diseased. Even then, knowing Aimee’s time spent in hospice, her history, etc., some treating doctors wanted to wait, put off the surgery and just monitor her. Needless to say, I made sure the surgery was scheduled, Aimee had her Gallbladder removed and Aimee starting eating like a champ, once again, which was one of her favorite things to do in the whole world.
The moral of this story, “never say no,” never throw in the towel, be willing to push everyone’s limits, including your own, fight the fight, the system, be the strongest, best advocate that you can, and never, never be intimated by anyone attempting to take control in a way that you feel doesn’t best serve your family member.
Aimee lived another 3 years after her initial stay at Keystone Hospice, and her Gallbladder surgery.
Aimee’s Final Journey
Aimee lost her final battle, February 9, 2009, from complications caused from Aspiration Pneumonia. Aimee returned to Keystone Hospice a week before her death, returning like a Rock Star, welcomed by all who knew, loved, and cared for her, as Aimee transitioned, the way I would hope every person on the planet gets to experience. Aimee was surrounded by loving caretakers, as was I, and Aimee took her last breath in my arms.
Aimee’s Team and Aimee’s Bulletin
After Aimee’s death, Aimee’s Team continued to work feverishly, as fierce advocates, to ensure that no other individual within the Great State of Pennsylvania, would ever have to endure or negotiate the broken system that allowed for so many to fall through the cracks, at the hands of their Group Home Provider, personal beliefs and interpretations.
Aimee’s suffering, inspired changes to ensure that thousands of other “Aimees” throughout the Great State of Pennsylvania are given choices, and aren’t forced to suffer at the hands of an ill-equipped provider, left to their own beliefs, and interpretations.
I salute all of “Aimee’s Team” members for stepping up to the plate, and for volunteering their time, energies and expertise to truly make a huge difference, one that will ultimately effect Special Need Individuals, and their Families for years to come. The result of these efforts is “Aimee’s Bulletin” signed and registered in Pennsylvania on January 15, 2011.
Aimee got lucky, she had a loving, devoted sister as an advocate, who just wouldn’t take no, and who learned how to negotiate a system that was broken at the time, and attracted a wonder group of ultimate professionals within the field, who contributed both their time and expertise.
We want to ensure each and every Special Needs Individual, and their family have access to a working, cutting edge, seamless, supportive system, without the barriers that plagued Special Needs Individuals, and their families for far too long. This is the purpose of this website – to create a lasting legacy and tribute to Aimee’s indomitable spirit and to disseminate information about the provisions of Aimee’s Bulletin to other individuals and families facing emotionally wrenching end-of-life decisions.
I’d like to publicly acknowledge and thank all the members of Aimee’s Team, with particular thanks to:
*Uncle Marvin, the late Marvin Rothstein, Aimee’s Legal, Court Appointed Guardian, was involved in every aspect of Aimee’s care. Most days, especially in the midst of a crisis, I found myself speaking with Uncle Marvin several times a day. There wasn’t anything that Uncle Marvin didn’t know when it came to Aimee’s care, he was “our” Uncle, my witness and partner. Uncle Marvin survived our beloved Aimee by just seven months, but lived long enough to feel certain that Aimee’s Team would prevail, we would make a difference. Aimee received the love, attention, and care that she deserved, because "our" Uncle Marvin made sure of it, as he always watched our backs.
*Gail Inderwies, RN BSN MBA, Founder and Executive Director, Keystone Hospice, Wyndmoor, PA
*Estelle B. Richman, Past Secretary of Public Welfare
*Michael Nardone, Secretary of Public Welfare
*Kevin Casey, Deputy Secretary, Office of Developmental Programs, Department of Public Welfare
*Honorable, Secretary Kathleen Sebelius, White House, Department of Health & Human Services
*Joanne Corte Grossi, MIPP, Regional Director, U.S. Department of Health and Human Services
*Jill Morrow-Gorton, M.D.. Medical Director, Developmental Programs Pennsylvania Department of Public Welfare
*Paul Feldman, Esq., Feldman and Feldman, Jenkintown, PA
Vicki Stillman-Toomey, Regional Program Manager, Department of Public Welfare
*Lisa Sandler, Aimee’s Sister-in-Law and member of Aimee’s Team
*Dottie Morasco, Keystone Hospice, Administrative Assistant
*Michelle Brooks, Keystone Hospice, Director of Social Services
*Roseanne Muscarella, Keystone Hospice, Social Worker
*Laura Thomae, Keystone Hospice, Music Therapist
*Ann Kinsey, Keystone Hospice, Nurse
*Rabbi Brian Nevins-Goldman, Keystone Hospice, Chaplain
*Ann Faverella, RN, Nurse Consultant Southeast and Philadelphia Region
*Peggy Dolan, Executive Director, Kelly Ann Dolan Memorial Fun
*Teresa Araco Rogers, Harp-Weaver, Giving With Meaning
*Abington Hospital’s Pallative Care Department
*Dr. Jim Mahoney, Abington Plaza Associates, Aimee’s Primary Doctor
*Sue and Hector Badeau, parents of their beloved, Dylan Badeau
*Chelsea Badeau, sister of beloved Dylan Badeau, and our wonderfully creative Webmaster
**And, with particular love and affection, to my grown children, Adam and Rachael Honowitz, who always gave me the space to care, and be with Aimee, unconditionally, with great love, compassion and understanding.
Music Credits:
"Alleluia"
written and performed by Laura Thomae
© 2006 Copyright-Laura Thomae
℗ 2006 Melodyvision