“Dr. Angelo Volandes is making a film that he believes will change the way you die,” the article begins. Read more at http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/
Category: Care-Giving Concerns
There are certain “set pieces,” or repetitive scripts that become a part of every Rabbi’s life. This comes under the heading of REALLY telling tales out of school. Each of us clergy-people brings a certain formula into play when confronted by different cycle of life circumstances.
Editor’s Note: This contribution is by Allan Brindell.
I’ll never forget the day that my journey into the area of “care giving” began. Life was good! Everything was good for me; good for the family and things were going the way I wanted them to be going.
It started on a Friday night that I will never forget. It was June 30th, 1989. I was busy at work, finishing things up and getting to relocate to California. I had wanted to move back there for such a long time and finally had my chance. I was to move within the next week or so.
Family was good on the Friday in June my mom had retired that day after working for the same company for about 19 years. So my mom and dad decided to go out and celebrate my mom’s retirement. They left and within maybe a half hour my phone rings. It was a phone call I will never forget for it had changed everyone’s life forever. It was my mom on the phone, dad just had a stroke at the restaurant.
I rushed out of the house frantic. And as I was driving, I know what restaurant my mom said they were at but I drew a blank. So I pulled over not being able to think straight. Where are they I’m blacking out. Then I saw an ambulance rushed by with the lights going. My instinct said follow that ambulance. My luck must have been with me for that was the ambulance going to where my dad was.
I remember seeing my dad in the back of the ambulance and then proceeded to meet them at the hospital. The emotions for everyone was running high that night. After hours at the hospital my mom and I returned home. As we were standing in the kitchen all she said to me was “What are you going to do?” [meaning about the move that was coming up] My response was basically I don’t know I don’t have a clue. Eventually I was able to delay the transfer for a short period of time. When I did leave to move on that Sunday morning I walked out of the house in tears not being able to look my mom in the face. I drove off not being able to look back. I made the 3,000 mile trip to California in 6 days alone. By the time I got there on that Friday my decision was I can’t do this. So 2 days later I turned around to make the same 3,000 mile journey to be at home where I belonged in the first place. I have no regrets on the return. After all isn’t that family is supposed to do.
Thus began the journey of my mom and I being care givers for my NOW disabled dad. Trying to deal with a different man from what we knew all those years. He was usually a quiet man; a family man. But looking back I now saw a different man. He was now dependent on US for his care. He was different physically and emotionally. He was paralyzed on his left side meaning that the stroke occurred on the right side of his brain. So physically he couldn’t do like he did before. And emotionally he was a changed man. He would be sitting at home at times in tears. I would look at my mom and we would just glance at each other like “Why is he crying?” My mom would shrug her shoulders and just try to say I don’t know why he is crying. His long memory for whatever reason was intact. I would hear the same stories that I always had and heard a million times as a child. But his short term memory was another issue. The same questions over and over again and usually minutes apart.. As time went on some sort of dementia set in. He would go thru periods of outbursts for no reason at all. He became difficult to handle. He would hallucinate.
In the interim, after my dad had his stroke in June of 1989, my mom took ill. It was the end of 1990 I guess. My mom had several bouts of cancer – lymphoma. But this time was different. The doctors were having trouble getting the cancer under control. My mom progressively was getting sicker and sicker as time went by.
So from 1990 on I became the sole care giver for both parents. I would be at work and would get an urgent call. Come home you have to get me to the hospital. Mom didn’t want to call the ambulance, she wanted me there. So I would rush out of work. I can’t tell you how many times I had to leave work because of the family emergency. My mom eventually passed away in June of 1992.
So I was still taking care of my dad at this point. But it was tough trying to deal with 2 ailing parents at once. I didn’t know which way I was turning. It was after my mom passed away that my dad began with the hallucinations; the outbursts. He would become more and more difficult to handle. I couldn’t talk to him. I couldn’t reason with him.
There was one time my dad was in the hospital for something and in the middle of the night I got a call from the hospital. Come down, we cant control him. We need to medicate him. So I would go running at 1 or 2 o’clock in the morning. Once I had to help the doctors control him to medicate him and my dad was so mad because of what was going on all he was able to say was that he had no son I was dead to him. Again outbursts.
And at times seeing him medicated in the hospital and being placed in the psychiatric ward. He didn’t have a clue as to what was going on.
I can’t tell you how many times I would sit back and look at my dad and think, “This isn’t my dad.” This isn’t the dad that I grew up with. He was a changed man for the worse.
It was ever so difficult being a care giver. For after the time that my mom had passed away, I began the worst part of my own journey as “patient.” I started to have one surgery after another. And while I was at home trying to recover on my own from surgery at the time, I was also playing the role of care giver. I had to wear 2 different hats at the same time. And whatever was going on in my own life physically I couldn’t talk to my dad about it. I couldn’t get the emotional support that I needed as well. He wouldn’t understand and was always afraid of dumping on him more then he could have handled emotionally.
So what did I go thru personally as a caregiver? I went thru periods of anger; frustration lonliness; despair. I had no where to turn to. I had to do it alone. I needed to have some sense of control over what was going on, but yet looking back I was probably, no I can say I WAS out of control. I was out control emotionally spiritually and physically. i was your classic example of what a “burned out” person probably was. I couldn’t deal with my dads emotional and physical needs and I certainly wasn’t handling any of my own needs. While I tried to find time for myself, mini vacations. While I may have been away from home physically, mentally I was always at home. Always wanting to make sure that he my dad was being taken care of. I was a lost soul.
And while my dad has been gone going on 10 years now I am still trying to deal with things. Things that were ignored or thinking of the things that I should have done differently while my dad was still alive. Angry for what went on that maybe I could have done things differently or handled things better. But when you get caught up in a situation — a catch 22 — you start to spin in circles and can’t get out of where you are at.
I feel that thru the care giving process I have walked a million miles. Wishing ever so much that I could turn the clock back. Finding a better way of doing things or a better support system. But I realized that I didn’t have a support system. Doing it ALONE you find yourself in that dark lonely place wondering if anyone ever will understand what you have gone thru.
So when I hear or see another person in a care giving position that is living the same lfie that I did ever so many years ago, I tend to relive those moments. You never truly forget the role of “care giver” for the impact it has on you, only you can tell that story in hopes that someone else doesn’t have to have the same experience.
Now I understand the importance of being a “care giver” and I certainly undertand the emotional; spiritual and physical impact it has on you. Whoever is a care giver all I can say is “if possible don’t do it alone or think you can do it alone” & “wherever possible get the support that you do need in such a time!!!!”
by Charles Ornstein
ProPublica, Feb. 28, 2013, 8:59 a.m.
This story was co-published with The Washington Post.
My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?
It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.
Doctors couldn’t tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.
My father and sister looked to me for my thoughts. In our family, after all, I’m the go-to guy for all things medical. I’ve been a health-care reporter for 15 years: at the Dallas Morning News, the Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America’s complex health-care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.
In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health-care system.
I’ve long observed, and sometimes chronicled, the nasty policy battles surrounding end-of-life care. And like many health journalists, I rolled my eyes when I heard the phrase “death panels” used to describe a 2009 congressional proposal that would have allowed Medicare to reimburse physicians who provided counseling to patients about living wills and advance directives. The frenzy, whipped up by conservative politicians and talk show hosts, forced the authors of the Affordable Care Act to strip out that provision before the bill became law.
Politics aside, I’ve always thought that the high cost of end-of-life care is an issue worthy of discussion. About a quarter of Medicare payments are spent in the last year of life, according to recent estimates. And the degree of care provided to patients in that last year — how many doctors they see, the number of intensive-care hospitalizations — varies dramatically across states and even within states, according to the authoritative Dartmouth Atlas.
Studies show that this care is often futile. It doesn’t always prolong lives, and it doesn’t always reflect what patients want.
In an article I wrote for the Los Angeles Times in 2005, I quoted a doctor saying: “There’s always one more treatment, there’s always one more, ‘Why don’t we try that?’ … But we have to realize what the goals of that patient are, which is not to be in an intensive-care unit attached to tubes with no chance of really recovering.”
That made a lot of sense at the time. But did it apply to my mom?
We knew her end-of-life wishes: She had told my dad that she didn’t want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I’d never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.
As my mom lay in the ICU, there was no question that her brain function was worrisome. In the hours after she was revived, she had convulsions, known as myoclonus, which can happen if the brain lacks oxygen. After that, she lay still. When the neurologist pricked her with a safety pin, she didn’t respond. When he touched her corneas, they didn’t reflexively move.
I began checking the medical literature, much like I do as a reporter. I didn’t find anything encouraging. Studies show that after 72 hours in a coma caused by a lack of oxygen, a patient’s odds of recovery are slim to none. I asked my writing partner in New York to do additional research. She, too, found nothing that would offer much hope.
But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup. She had Parkinson’s disease for a decade, and in 2010 she suffered a closed head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?
Truth be told, I was already somewhat skeptical about physician predictions. Just last summer, my dad’s heart stopped, and it took more than 10 minutes of CPR to revive him. Doctors and nurses said a full neurological recovery was unlikely. They asked about his end-of-life choices. Mom and I stayed up late talking about life without him and discussing the logistics of his funeral. But despite it all, he rebounded. He was home within weeks, back to his old self. I came away appreciative of the power of modern medicine but questioning why everyone had been so confident that he would die.
Also weighing on me was another story I wrote for the Los Angeles Times, about a patient who had wrongly been declared brain-dead by two doctors. The patient’s family was being urged to discontinue life support and allow an organ-donation team to come in. But a nursing supervisor’s examination found that the 47-year-old man displayed a strong gag-and-cough reflex and slightly moved his head, all inconsistent with brain death. A neurosurgeon confirmed her findings.
No one was suggesting that my mom was brain-dead, but the medical assessments offered no hint of encouragement. What if they were off-base, too?
Over dinner at the Chinese restaurant, we made a pact: We wouldn’t rush to a decision. We would seek an additional medical opinion. But if the tests looked bad — I would ask to read the actual clinical reports — we would discontinue aggressive care.
A neurologist recommended by a family acquaintance came in the next morning. After conducting a thorough exam, this doctor wasn’t optimistic, either, but she said two additional tests could be done if we still had doubts.
If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.
On Friday morning, the final test came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.
We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.
I don’t think anyone can ever feel comfortable about such a decision, and being a health reporter compounded my doubts.
I was fairly confident that we did what my mom would have wanted. But a week later, when I was back in New York and had some emotional distance, I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.
Curious how experts would view it, I called Elliott S. Fisher. I’ve long respected Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas. The Atlas was the first to identify McAllen, Texas, subject of a memorable 2009 piece in the New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.
I asked Fisher: Did he consider what my family did a waste of money?
No, he said. And he wouldn’t have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.
“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”
Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.
“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”
I left the conversation agreeing with Fisher’s reasoning but believing that it’s much harder in practice than it is in theory. You can know somebody’s wishes and still be confused about the appropriate thing to do.
The past few weeks have been the most difficult of my life. I hope what I learned will make me a better, more compassionate journalist. Most of all, I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.
Have you had to make end-of-life care decisions? Share your experience in our comments below.
This week, Jewish Sacred Aging contributor Dr. Don Friedman visits Rabbi Address’s WWDB-AM 860 radio talk show, “Boomer Generation Radio.” Dr. Friedman is a Practical Healthcare Adviser who also writes his own website.
Read Dr. Friedman’s bio.
The program airs every Tuesday at 10 a.m., and features news and conversation aimed at Baby Boomers and the issues facing them as members of what Rabbi Address calls “the club sandwich generation.”
You can hear the show live on AM 860, or streamed live from the WWDB website.
We will also post podcast recordings of the program here.
More images from the studio during Rabbi Address’s first show.
Editor’s Note: Nancy Rubin delivered this D’var Torah February 16 at Beth Sholom Congregation and Talmud Torah, Potomac, MD as part of Jewish Disabilities Month. We share it here with her permission.
Nancy Rubin is a counsel in the corporate department of Skadden, Arps, Slate, Meagher & Flom LLP, specializing in mergers and acquisitions and corporate governance.
Shabbat Shalom. As a corporate lawyer, I am used to speaking to Boards of Directors, negotiating deals or teaching lawyers, but there I am discussing mergers and acquisitions. So when I was asked to speak for this Shabbat, I initially declined as I have never spoken publicly about matters personal to me and my family. However, I decided to speak because I think this is important for children with special needs including my son.
My husband Ben and I have four children, Rachel, Rebecca, Sarah and Josh. Josh has many difficulties – medical issues, emotional issues and learning disabilities. He was born with an immune deficiency that makes him susceptible to certain bacteria. Josh had his first surgery for ear tubes when he was six months old. By the time he was seven, he had had over fifteen surgeries under anesthesia. At one point, he developed a benign tumor that was removed along with part of his ear anatomy. A few months later the tumor had fully grown back. This time the surgeon removed it, as well as a more substantial portion of his ear anatomy including two of his three ear bones to make sure it would not grow back, requiring Josh from then on to wear a hearing aid in his right ear. I remember when he got the hearing aid at age six, I was so sad thinking my son might need to wear this his whole life. At this point I would give anything to have that be his only difficulty.
On the emotional side, Josh was diagnosed early in life with a mood disorder which evidenced itself with aggression and impulsivity. After a lot of trial and error working with different behaviorists and psychiatrists as well as different medications, we have been successful in substantially controlling his behavioral issues for the last several years. Josh also has severe learning disabilities. All of his academic skills are several years below grade level. Josh is now 12 and has been enrolled in seven schools.
So what do you think is the hardest part about being Josh Rubin?
After hearing all this you might be thinking, “Everything seems hard about being Josh Rubin!” But the answer is none of the above. Echoing the speaker from last year’s Jewish Disability Awareness Shabbat, the hardest part of Josh’s life is his social life – or lack thereof. Mainstream children pick up very quickly that children with special needs are different, and generally they have little desire to be with them. The task for us as parents of mainstream children – of which I am one as well – is to teach our children the importance of including children with differences. It took the birth of Josh for me to realize that I had not communicated this message well enough to my daughters, who missed many opportunities to reach out to peers with special needs. I remember inviting for Shabbat lunch a family with a child with autism who is about the same age as one of my daughters. A few days later I ran into the father who said, “You have no idea how meaningful it was to my daughter to go to your house for lunch.” “Oh, it was nothing, my pleasure,” I replied casually. “No really,” he said. “It made her feel so good, and my wife and I thank you for that.” I walked away thinking that that was quite an effusive thank you just for a Shabbat lunch. I really did not get it. Now I get it. And I regret not reaching out more than I did.
Most children’s weekends are packed with birthday parties, play dates and sleepovers. Children with disabilities have very few of these. I can count on one hand the number of birthday parties, play dates and sleepovers combined that Josh has been invited to in the last several years. The world is not an easy place for kids with special needs. And although things are moving in the right direction here, our community is no exception. I was once approached by a parent in this community with a younger child with special needs. He said to me, “When I watch how the boys here treat your son, I worry about what it will be like in shul for my child in a few years.”
Ok, so you may be thinking, “What exactly is she talking about?” Josh loves sports, but often he does not fully understand all the rules, and with his coordination difficulties, he will never be the star player. On many occasions as Josh and I arrive at shul, there is a football or soccer game going on outside. Josh approaches the kids and asks to join. “Sorry, the teams are all set. Sorry, the game has already started,” is the common response. On many occasions, I watch Josh run to approach a group of kids only to have them scatter with one yelling “Run, Josh is coming.” Kids with special needs often don’t get social cues. So if that is not painful enough for a mom to watch, I then realize that Josh does not get that they are running from him. He thinks they are playing tag and starts to run after them. Then there are the Shabbat lunches. One in particular I recall so clearly. We were invited for lunch by a family with a son around Josh’s age. When we got to the table, the boy changed his seat several times to avoid sitting next to Josh, only for Josh to change his seat to be closer to the boy. Later in the meal, Josh asked the boy to go outside to play. The boy said no, so Josh went out and kicked the ball around by himself. Then the boy whispered something in his mother’s ear, ran upstairs, changed into casual clothes and ran outside. Josh thought he was coming out to play with him, but the boy kept running. “Where are you going?” Josh yelled. “To a friend’s house.” “Can I come?” asked Josh. “No” said the boy. Josh walked back inside and quietly took his seat at the table. Ben and I looked at each other — I excused myself from the table, went to their bathroom and cried.
But rather than wallow in our pain, we as parents of children with special needs, stand up, brush ourselves off, and think about what we can do to make our child’s life as happy as it can be. On one occasion at shul, when I witnessed a boy doing the “Run, Josh is coming” thing, I hesitantly approached his mother and told her what happened. She looked at me and said, “I am appalled!” I was worried as to where this conversation was headed. “I am appalled,” she repeated, “at my son’s behavior. I am embarrassed that he acted that way, and I apologize. I truly thank you for bringing this to my attention. I can guarantee you that will never happen again.” I was so touched by her response. I can only imagine the discussion that took place in their home that day, but she was right. Not only did it never happen again, but to this day her son is extremely kind and inclusive of Josh, always saying hi when he sees him.
Things have definitely improved for Josh here.
In part because his peers have matured and now “get it.” They are starting to understand that they should include him, even if having him on their team is not going to help them win. One friend of mine who has a son a few years younger than Josh told me that he talked to his son about Josh, and explained that he has issues and should be included, not avoided. There are also some wonderful people in this shul who are so good to Josh. When kiddush or lunches are being prepared by caterers, the Sisterhood or for the Sephardic minyan, Josh is often allowed to help. I remember one occasion when I was looking for Josh and went into the kitchen. Signature Caterers was busily preparing for a kiddush lunch for the shul. I saw about six men on their staff lined up in front of a table plating salads – and there in the line I saw Josh. He, like the others, had on plastic gloves and was part of the team plating salads. I was so touched that I hugged Larry and thanked him so much for letting Josh help. Now I was that over-effusive parent who thanked me for the Shabbat lunch. But Larry understood – he got it. I have thanked Barbara, Tracy and Larry privately, and now I have the opportunity to tell you publicly how appreciative Ben and I are that you let Josh help.
So what can we as parents and shul members do to be sure all of our kids feel part of our shul community? We can take a moment and say hi and ask how they are doing. It’s OK if they don’t always answer you back; it is still meaningful to them. If you get an honor in shul and you see a child with special needs, invite him to join you to open and close the Ark or stand next to you for your aliyah. If you see children excluding others or being cruel, be proactive and say something. As many parents have told me, being excluded and left out is not something experienced only by kids with special needs. Lots of kids feel that here, and that is something we all should work on with our children. I often say to the kids, “Hey, this is a Jewish community and we all need to be kind to each other.” In doing so, we are setting an example for our children to reach out to them. We can also talk to our own children to help educate and sensitize them to the situation. Explain that some children are a little different, they don’t get all the jokes and they won’t hit the home runs, but it is kind to include them. Many kids who have differences are in schools in which they are surrounded by other kids with varying needs. It is really good for them to socialize with mainstream kids, so they can learn to model more appropriate behavior.
Communication is very important in both directions. Parents of other children in the congregation should not feel shy to ask about the situation or how to make things work. For example, our son was once invited to a peer’s paintball party, and the mother asked if we would send a teenager along. We were happy to do so and thrilled that Josh was included. It was much better that she invited him and asked for help rather than not invite him, deciding it might be too difficult for him to handle on his own. Communication is important the other way as well. Parents of kids with special needs should be open and realistic about their children. If an invitation is made, they should be proactive and make a plan that sets their child up for success. An hour or two, for example, may be better than a four hour play date.
Then there is Friendship Circle. For those of you who are not familiar with Friendship Circle, it is an organization run by Chabad that pairs up teenage volunteers with children and teens with special needs. They have activities almost every Sunday. Many of your children volunteer at Friendship Circle, which is wonderful, because they are assisting the children, and giving them the respect and dignity they, like all of us, are due. When I go, I see so many young people from this community, it is truly beautiful. Friendship Circle is an amazing organization and believe me, your children are doing the right thing. You as parents should be very proud of them, and you should also be pleased with yourselves for encouraging it. The emotional intelligence volunteers develop through an experience like that is invaluable for their own growth and success in life. One thing I tell the Friendship Circle volunteers though – “Don’t forget your buddy when you step outside of Chabad.” If you see the kids in shul or in the neighborhood, a hello is very meaningful, and if you can include them in your games that is a really great thing to do. The Shamash program that has just started up at our shul is also a wonderful program of which we have already seen the benefits.
I would be remiss if I did not mention another dynamic of children with special needs, namely, their families. Having a child with multiple needs puts enormous stress on the child’s parents and siblings. There are so many tough decisions to be made and so many unknowns about what his future will be like. For years I could not even say the words “residential facility” or “group home” without getting teary. Thank G-d we have been able to handle Josh’s issues so far without going that route, but who knows what the future will bring? Will Josh be able to support himself? Will he be able to live on his own? Could things improve enough that he could even get married and have a family? These are all questions that loom over Ben and me all the time. And if the answers to those questions are no, will we be able to put enough money aside to support him in the future so he can have a lifestyle similar to the ones his sisters are likely to have? As Josh’s troubles unfolded over the years, I was always afraid that something might arise that Ben and I did not agree on the best way to handle. Luckily, my fears in that regard were unfounded, as he and I have always been on the same page with Josh. One example is Josh’s schooling. Ben learns Torah every night, and I know when Josh was born Ben dreamed of spending time learning with his son. However, early on it became clear that Josh would not be able to handle a dual education. Yet I feared that it would be hard for Ben, as a rabbi, to give up that dream and take Josh out of the Hebrew Academy. But Ben wanted the best for Josh and accepted the need for a school change without hesitation. Ben is an unbelievably wonderful father to Josh. I thank G-d every day for giving me such an amazing husband as we support each other and work as a team in facing this lifelong challenge. Ben has always said that our responsibility as parents of Josh is to do everything we can do to make his life as normal as possible, and together we live by that credo.
Then there are the siblings. When you are one of four children, you are entitled to 25% of your parents’ focus, time and attention. But a sibling of a child with disabilities does not get his or her fair share as some of their 25% must go to their sibling. It is not fair, and not always easy to accept but that, unfortunately, is the way it is. It’s hard growing up with a brother or sister with special needs. When I was a teen having a party, I did not want my little sister hanging around. I would yell to my parent’s ”Mom, get her upstairs, this is my party!” And that is a totally normal emotion for a teenager to have and a totally normal thing for a teenager to say. But our girls on their own most often resist doing that and not because Ben or I ask them to include Josh. They know Josh rarely goes to parties and he is so excited to help make the guacamole and set up the chips and dips, and so excited that teenagers are coming over. So they let him stay, even if that means he might be talking non-stop to their friends. While it is not easy for siblings of kids with unique needs, they do learn to be much more sensitive to people with differences. Our daughters have all been Friendship Circle volunteers. Our daughter Sarah’s current career goal is to be a psychologist or psychiatrist for families with kids with special needs. Sarah spends a lot of her time outside of school tutoring and taking care of children with special needs in our community and in local shelters. A dear friend of mine once recounted to me a conversation she had with our daughter Becca. Becca told her that she needed to make a lot of money when she got older. My friend was puzzled as she knows we teach our kids to choose careers they enjoy and will want to spend their life doing, and not base that choice on money. She said she asked her why. To which Becca responded, “After my parents pass away, I will need to support Josh.” I was so moved by this. I told Becca that no, that was not her responsibility, Abba and I would take care of that and she should pick a career she likes regardless of the money. Our daughter Rachel recently told me that when she gets married, she plans to have Josh move in with her and her husband. Again, I was so moved but said “No, you will have your life which will be very busy when you start a family.” She responded, “Mom, an adult should not be living with his parents.” While I never would have chosen to have this challenge in life, one silver lining is the positive impact it has had on our girls. Siblings are so incredibly important to a child with a disability who may have few friends. Unquestionably, the best thing that ever happened to Josh is having Rachel, Becca and Sarah as his sisters. They mean the world to him.
The challenge reaches beyond the nuclear family. Our extended families provide enormous support to us. I speak with my mother almost every day and one topic we discuss on every call is Josh – how his day was, did things go smoothly for him. Ben’s dad always asks about Josh and consults with experts he knows to help guide us. There were so many decisions to be made over the years as to how to handle his multitude of troubles. Ben and I are truly indebted to our families for being there for Josh and for us. My family knew that giving this talk would be tough for me and so my mother and brother are here from New Jersey and my sister is here with her son from Boston.
One example of how our family has pulled together for Josh is his Bar Mitzvah. As I have sat in this sanctuary over the years, I have watched many of your children beautifully read the Torah and Haftorah and lead davening. Alongside the happiness I felt for you, I always had an ache inside wondering what Josh’s Bar Mitzvah would be like as he cannot read any Hebrew and cannot even read the transliteration. We decided to have his Bar Mitzvah on a Sunday as we did not think whatever he would do could be done in front of the whole congregation. Ben picked the first date Rosh Chodesh fell on a Sunday after Josh’s 13th birthday. We started working with him two years before his Bar Mitzvah date, June 9 of this year. We taped laminated cards with his Torah portion and the brachot to our kitchen cabinets. Every Friday night starting in June 2011, as we eat dinner, we go around the table and each of the six of us chants Josh’s Torah reading with the correct troupe. We started with one line and added a few words as Josh mastered a section. We are proud to say that Josh has now memorized in full the two brachot, as well as the first aliyah for Rosh Chodesh Torah reading. Now, when possible, he practices it in front of the Torah after kiddush on Shabbat so he will get comfortable with the room and chanting standing in front of the Torah.
I would like to end with a story of something that happened last Rosh Hashanah. I davened in the Abrahmson Hall. The Ark was open and everyone was standing. All of a sudden Josh walked to the bimah, which was great – I enjoy when Josh stands at the bimah and experiences what goes on in shul. But then he continued walking to the Aron Kodesh and stood right in front of it. Then I wasn’t so happy – I got nervous about what he might do. My seat was pretty far away, so I walked up to the mechitza. I am not sure what I thought I would do if he did anything wrong, was I going to vault over the mechitza? – but I figured I better get closer. He just stood there inches from the Torah, and I envisioned him taking it out and rolling the scroll down the aisle. Rabbi Antine saw my anxiety and motioned to me not to worry, he would keep an eye on him. A friend, who happened to be near me read my mind and put her arm around me. Josh then leaned forward, kissed the Torah as he does in the Sephardic Minyan, closed the doors and walked away. Rabbi Antine followed him, took his hand, and together they walked back and reopened the doors. Crisis over, I exhaled and walked back to my seat. As I approached my seat a woman came up to me full of emotion and a big smile. She put her hands on my shoulders and said, “Nancy, I know exactly what you are feeling right now. I remember the first time my son was given the honor of opening and closing the Ark. I had goose bumps I was so proud.” I nodded politely and thought to myself, “You have absolutely no idea what I am thinking right now, and it definitely is not that.” I was actually thinking “Thank G-d a potential disaster was averted.”
If there is one thought I would like you to take away from my talk today, it is the following. It is very hard to be a parent of a child with special needs. It is very hard to be a sibling of a child with special needs. And it is very hard to be a friend of a child with special needs. But as hard as each of those things are, they pale in comparison to how hard it is to BE a child with special needs. So it is incumbent on all of us who have been blessed by G-d to be born without the challenges these children face, to step up to the plate and do what we can to make their lives just a little bit easier and a little bit happier.
Thank you for listening to me speak today. And thank you all for reaching out to the kids with differences in our community and helping to teach your children to do so as well.
Rabbi Address ‘Boomer Generation Radio’ talk show on WWDB-AM 860 features estate planning attorney, Andrew Kushner
This week on Rabbi Address’s WWDB-AM 860 radio talk show, “Boomer Generation Radio,” Rabbi Address discusses estate planning for Baby Boomers and their parents with attorney Andrew Kushner.
The program airs every Tuesday at 10 a.m., and features news and conversation aimed at Baby Boomers and the issues facing them as members of what Rabbi Address calls “the club sandwich generation.”
You can hear the show live on AM 860, or streamed live from the WWDB website. We will also post podcast recordings of the program here.
More images from Rabbi Address’s first broadcast.
Recently my employer, Jewish Family and Children’s Service of Minneapolis, invited a guest speaker talk to our staff about Social Security and the options about when to file. It was full of information on which to make an informed decision about retiring and collecting Social Security and Medicare.
The golden rectangle reads: “This Is Your Comfort Zone,” according to an article I skimmed about a TV show I will probably never see. The entire second season promises to exist outside said comfort zone. Presumably a devil-may-care attitude about drugs, illicit romance, sexual identity, and stalking is enough to guarantee a second season.
This is not to say that I have not watched some fairly gritty TV shows, including some where I have felt emotionally invested with characters doing some despicable things (Breaking Bad, anyone?). Perhaps this is a way to expand my comfort zone vicariously.
I thought of many ways I could write about comfort zones; about how Jewish and family values play into decisions we make; about the role of self-discipline in our lives, and on and on, but the way the issue struck me was about how caring for our elders can consistently pull us out of our comfort zones.
For some of us, dealing with bureaucracies is uncomfortable: Social Security, Medicare, and Medicaid forms, with their attendant rules and regulations, can drive us to distraction. For others, searching for proper venues for care is a huge stressor. And many of us in the so-called sandwich generation need to exit our comfort zones not only in caring for elders, but for ourselves and children and/or grandchildren.
We may have the financial resources to bring outside help to bear on our problems. There are attorneys who can help get our ducks in the row to get a partner or parent into a nursing home, financial advisors who can guide us in preparing for a range of contingencies, etc. We might find a plausible answer to a question, or begin to plot a seemingly sensible path to action through browsing the internet. Even with this ammunition at hand we may feel we’re up the proverbial creek without a paddle.
Often it helps to have others to commiserate with, especially if family members or friends don’t want to hear our tsouris (troubles) any more. For example, we have a monthly caregivers’ support group at River Garden, and local hospitals have programs for those dealing with Alzheimer’s Disease.
It occurs to me that the differences between these two types of comfort zones, whether those having to do with morality or those involving decisions based on emerging needs has to do with our attitudes. What’s problematic for me (“stupid paperwork…”) may not be problematic for you; what’s problematic for you, I may take in stride.
Attitudes, however, are subject to change. Without necessarily wearing our hearts on our sleeves, we can be more transparent about what’s going on in our lives. We can share our situations, and examine what we’re doing to get beyond our challenges (it may be too much for now to look at them as opportunities!). We can ask for help. And sometimes we may need to accept things just as they are, for now.
And just as importantly, even if we have a boatload of personal needs, we still can be of help to others. As Hillel was accustomed to say (Pirke Avot, 1:14), “If I am not for myself who will be for me? Yet, if I am for myself only, what am I? And if not now, when?” We must be strong advocates for ourselves and our loved ones, reach out to help others, and perhaps most importantly, take action.
At times I feel stalled, and take a while to take action. And I’ve often wondered afterward, filled with relief, what took me so long. I will continue to work on that. Whatever it is you need to work on, chazak, chazak, v’nitchazeik. May we learn to be strong, increase our strength, and strengthen each other.