It’s my blog so I guess I can write about whatever I want. I usually write about healthcare and investing and entrepreneurship, but today I’m writing about life: my life and that of my family. It has a healthcare bent in a way, and is an abject lesson about doing what is right and being a good person and remembering who matters when it comes to end of life planning. And I hope you read it, as I don’t usually get quite this personal in this space.
My grandfather died on May 17, 2017. He was 101 years old. Damn! You might say, he lived a long time. And you are right. But it actually wasn’t his time to go, at least the way I see things. He didn’t succumb to some chronic disease after years of suffering. Not even close. At 101 he was remarkably healthy with some problems, but entirely cognitively there, getting along living in his long-term home (with a caregiver most of the time), and still reading the New York Times every day as he had done since elementary school. What happened was this: my grandfather lived in a retirement community in Fort Lauderdale/Sunrise, Florida. His place was along a canal and if you know Florida, you know that it is jam packed with weird wildlife, including the pretty super-sized lizards that hang out in the tree outside his back window. One managed to find its way inside the house and scared the caregiver. So my grandfather, ever the gentleman, tried to chase the lizard out, and in so doing broke his damn hip.
When I got the call from the caregiver, my heart sank. I already knew that meant the writing was on the wall. Sadly, the statistic goes like this: if you are elderly and break your hip, your odds of dying within a year are more than tripled; as many as 1/3 die within a few months. I called my sister, expressed my concern, and then spoke with the surgeon who felt strongly that surgery was warranted because, “the guy has a lot of living left to do, clearly.” The surgery went fine but was followed by the usual parade of old person post-broken hip maladies, including pneumonia, a heart failure episode and then the second bout of pneumonia-like symptoms, which ultimately killed him two months after the initial “successful” surgery. Imagine here the string of expletives you know I am thinking very loudly.
My grandfather was a real force of nature. He was a conservative Rabbi and worked as such until he was 98 years old, driving all over the place to do services. He even met my grandmother at a funeral over which he was presiding, asking her post-service if she was single. They married when I was 9 and he was the only maternal grandfather I knew. Rabbi David Gordon was a powerful and influential clergyman and received so many honors and awards that the Internet doesn’t have room for me to list them (great article about him HERE written 20 years before he died so it really only scratches the surface). But he was known for a couple of things in particular.
My grandfather fundamentally believed that all religions were valid and as he got older he became more inclusive and open-minded, working alongside all manner of other clerics from all sorts of faiths. He loved to read and he had a massive library of books, which he freely sent to people all the time. If you visited him in person, he insisted you leave with a few books. He loved jokes, particularly silly punny ones, and he handed out his own handmade copies of them to people everywhere – at the temple, at the grocery store, you name it. And lastly, he loved to sing. I recall watching my daughter sing with him willingly as a small child, less willingly as a teenager. On his last day alive he sang with a Rabbi who came to visit him. He could barely talk but he could sing and nothing short of death was going to stop him.
My sister and I spent most of the last two weeks of my grandfather’s life with him in Florida figuring out what to do next, then next, then next. We learned first-hand about some of the end of life issues I have talked about before but haven’t experienced quite as intensively. We also learned that there are 17 different wings restaurants within a 5-mile radius of my grandfather’s home, which suggests to me there is a meaningful chicken end-of-life opportunity to be had for any entrepreneur looking for their next gig and able to figure out the business model.
My grandfather considered my sister and I his closest family since his wife (my grandmother), my mother (who was his step-daughter) and his son had already died; thus we were responsible for ensuring that his final wishes were carried out, which is what he had asked of us. We were so fortunate that he had already attended to most of this in detail, leaving a very clear living will, plan for his funeral, and everything related. He was also entirely lucid until the very end, and thus we could ask him questions such as, “Would you prefer to be at home rather than in this hospital?” (his answer: a very polite form of “duh”). And despite this, it was still brutal, largely for two reasons (though there were others, including learning that his so-called lawyer had botched his will and trust – caveat emptor in the lawyer department).
First, despite his having left clear instructions about how he wished medical crises to be handled (e.g., when it was appropriate to remove life support, that he wished to be at home, etc), the process of carrying out of those decisions was heart-wrenching for my sister and me. Watching the nurse remove the IV and knowing that he could not swallow and thus could not eat or drink was knowing that he would soon succumb to dehydration and starvation. Even though we knew it was almost impossible for him to recover from his current medical state, it was a stark realization to have any role in assisting that process, inevitable as it may have been. Thankfully we knew we were doing what he wished, but that didn’t make it a whole lot easier.
Secondly, he had some extended family – nieces and nephews from siblings whom my sister and I had never met or heard much about to be honest—who were far more religious than my grandfather on the continuum of how Jewish can you be. As Orthodox adherents to the religion, versus my grandfather’s Conservative take on it, they felt that certain funeral arrangements must be adhered to and a few of these individuals were aggressively adamant about it, actually to the point of harassment. This was despite the fact that he was himself saying that he did not want certain ritualistic things (remember, he was lucid and cognitively unimpaired til the end and a Rabbi for about 75 years, so pretty familiar with his options). His will clearly stated his precise funeral wishes, which he had conveniently documented and pre-paid, believe it or not. His other relatives were unmoved by this and would have changed so many things if no one had been there to advocate for his specific plan.
A blessed advantage: my grandfather had presided over so many funerals that the funeral director and he were close buddies; thus there was no mistaking that what he wanted he was going to get. But fight that they did, those relatives we did not know, and they even tried to get the funeral director to change the plan behind our backs. It wasn’t pretty. At the funeral itself one of them was loudly complaining during the service that certain prayers should not be said because the situation didn’t meet what the Torah would require for them, at least according to his reading of it. I actually had to tell him and his wife to shut up and stop arguing during the service while we all stood 10 feet from the grave, and as the Rabbi who had known and loved my grandfather was reciting the prayers he felt perfectly appropriate to the occasion.
As the saying goes, you can pick your friends and you can pick your nose, but you can’t pick your family. I am grateful we kne
w what my grandfather actually wanted so we could keep reminding everyone that we were going to honor his wishes no matter how often or loudly they complained that we all were, in effect, doing religion wrong. Oy vey, as my grandmother would say.
You may have surmised that I am not a religious person and, while I do have my own self-made form of spirituality, it’s not something I really spend a lot of time on. Call me shallow, but I think a lot more about shoes and ice cream flavors and friends and my immediate family than I do about what passes for God or what happens after you die. My grandparents were Jewish but I always say I am Jew-ISH. My closest brush with true spirituality, however, has come with the passing of my grandparents. My grandmother died in 1999 and there are few people I love as much as her. She was fun and vivacious and hilarious and smart. She relished the naughty story, the practical joke, the good laugh at one’s own expense. She loved to gamble and the last time I saw her in real life was when I told her that I was so tired, it being 2 am, that I could not play blackjack with her anymore, but had to leave the Flamingo Resort casino floor to return to my room. She laughed at me and called me weak and went back to the game. She died several months later before I could see her again. I still think about her nearly every day.
My grandmother loved my daughter more than anyone on earth and the love was mutual. My grandfather told me that every single night the last thing my grandmother did before she went to bed was to kiss a photo of my daughter to say good night to her. My daughter was, at the time of my grandmother’s death, 3 years old and somewhat obsessed with monarch butterflies due to the classic “grow a butterfly from a caterpillar” project they were doing in pre-school. My grandmother literally called and asked her for a monarch progress report every single day. As a person who does not feel any sort of spiritual presence at cemeteries, I was forever changed by one particular moment when my grandmother died. As they lowered her coffin into the ground, an actual giant monarch butterfly seemed to fly out of the grave and hover over my family, flying in circles, for several minutes. We were dumbstruck by it. It seemed so like my grandmother had taken my daughter’s favorite form (and yes, if you are a fan of the movie Ghostbusters, you know what I mean), and was telling us it would be ok.
Wild as it was, over the last 18 years my sister and I always said that on the rare occasion we saw a monarch butterfly it was just my grandmother checking in on us. If either of us ever saw one we would text each other about it. And on the only day my sister and I ventured outside for a quick walk in the Florida heat to take a break from tending to my grandfather, no sooner had we walked out the door than a big fat monarch butterfly literally flapped its wings right into us on the path. We laughed and said it was grandma telling us “don’t worry girls; I’ve got this.”
But here’s the kicker. When we were leaving my grandfather’s funeral, misery-fest that it was, and were walking back to the car, all of a sudden two monarchs appeared in the sky right in front of us, separated by about 10 yards. For real. I have witnesses. They flew separately for a bit, then joined up and disappeared. And my sister and I and our husbands, who knew the whole story, stood there and tripped the hell out. We experienced it, in the face of all that religious conflict and family drama and our own basic lack of a religious ideology and felt that, in fact, my grandmother had come to take my grandfather to that winning blackjack table in the sky, or wherever butterflies go, and that whatever your religion or lack thereof, there must be something out there. Because. That. Was. Crazy. And awesome. It led to the first smile I had on my face in weeks. The second one came later, over large pours of scotch, as we relived the story at a bar near the beach. 
For the record, it took me a several days after my grandfather’s funeral to really cry. I had coincidentally started a refresh of my will and advanced directive before my grandfather got ill. It was time to do so, my kid having grown up when I wasn’t paying attention. With all that I experienced through my grandfather’s last two months of life, I realized far more clearly what was important to me in re-writing my own end of life wishes. And when I returned to act on it, about five days after the funeral, I just lost it. Cried and cried –a full snot-running-down-the-face, can’t breathe, choking to death kind of cry.
I know exactly what unleashed the crying Kracken – it was the thought of how hard it was to remove my grandfather from the last form of life support even though it was clearly what he wished, knowing we did the right thing, but still feeling so sad and conflicted about it. The reality of it all was a poignant exclamation point on the whole experience and it broke my heart to think that someday my husband or my sister or my daughter might have to make that decision for me.
Doing what is right for someone who is dying is not the same as doing something easy or doing what you want them to do. But you must do what they wish, not what seems right to you. It is our duty as humans to honor each other’s last wishes and not to try to impose what we want out of selfishness or self-pity. And if you love your relatives and friends, it is your duty as a human to help them by telling them what you wish those last wishes to be. I encourage you to do so, clearly and in writing. You can start your conversation here by answering these five questions my lovely friend Alex Drane so conveniently and lovingly put together through Engage with Grace. Then find a good lawyer (emphasis on good and thorough), and get real. Don’t wait too long or it might be too late. And watch out for the butterflies – they play a mean hand of blackjack.
Great blog my friend 🙂
Thanks Stewart!
This is one of the most profound things I have ever read!
Thanks Chris. Hope you are well.
Lisa — what a lovely tribute to your grandfather, your grandmother, and you. Xoxo Kristi
Thanks so much Kristi. L
Dearest Lisa, Thank you for your generosity in sharing such brilliant and poignant perspectives on this deeply personal but also universal experience.
I stand and give thanks to the Church of Gertrude and David for the spiritual and spirited being that is you!
And I second your encouragement for each of us to do the loving act of making our wishes clear.
Thanks to Rebecca Sudore for helping with the conversation
https://www.prepareforyourcare.org/#/resources
Aenor, dear friend. XXOO. Lisa
Very powerful, Lisa. Thank you. Thank you.
Thanks Dave. Be well, Lisa
Lisa, my dear friend. I’m guessing there were a few tears running down your cheeks as you wrote this magnificent piece. Your advice is pure. Let the dying patient decide how they want to leave this world, not some bickering family members. Good for you for holding your ground and that of your grandfather’s.
Bruce
Thanks Bruce. If I had a pencil protector with me I would surely have stabbed someone. Take care, Lisa
Lisa – thanks for the gift you’ve given us all.
Thank you Mark. Let’s meet up soon. Lisa
Lisa, that was beautifully written and I thank you for sharing….
Thanks Warren – hope our paths cross soon. L
Wow.
I’d like to share another story about monarch butterflies.
My daughter Bella asked me the right question as we spoke about Monarchs. These creatures migrate from Central Mexico to the California Coast. Six months northward and six months southward, flying thousands of miles.
“How is it possible, Daddy?” she asked. “How can they do it when they only live a month?”
I paused for a long time before I answered that I didn’t know.
Then I did.
No butterfly ever flew back and forth. Rather, it takes six generations of butterflies to fly north and six generations to fly south again. A little research uncovered that this has been occurring for about 240 million years. It has been an orange wave oscillating and lovely.
I hope that you and your family and your grandfather had all the support and optimal management of discomfort you needed.
http://www.ResolutionCare.com
PS. Alex Drane is a lovely friend of mine as well;)
Wow! I had no idea and that is the coolest story of what amounts to butterfly legacy and eternity. Thanks so much for sharing it. L
Thanks for sharing and great bless. by the way, Butterfly Lovers is a very famous folktale story in China, basically two lovers died and their spirits emerge in the form of a pair of butterflies, flying away together, never to be separated.
Thank you so much for this story Qingfeng. I am going to try to find it online. L
Dear Lisa, Thank you for your raw honesty. We need more of that in this world. It makes us all stronger.
Thank you Becky. Best, L
Thanks for sharing this, Lisa. Been through similar end of life experiences with my own parents in past few years. And butterflies appeared at a celebration we had in Thailand a few years ago…three yellow butterflies we strongly felt were representative of the three grandparents who had died recently. No need to be “religious” to feel the symbolism of those moments. Your grandparents left your with some wonderful life lessons that you will never forget! ????
Hi Linda, seems the butterflies have a clear role in the greater society and I”m glad of it. Best, L
Beautiful piece Lisa. What a guy. Rescuing his caregiver from a ????!
On a related note, in California/Oregon/Washington he would have had the right to have a painless death, rather than just withdrawing food & fluids and potentially suffering as he died. I have no idea if he would have taken that route but for sure he should have had that right
Thanks Matthew, I think that in the end he died comfortably and with knowledge that he had lived well and those who really loved him were there, butterflies included. L
So wonderfully told, Lisa. A reminder to appreciate moments with people, regardless of “total.” And the monarchs … wow. When we lived in Florida, I loved growing milkweed for them. They would dance with the dog, who only wanted to sniff them … I know there was a song about that, but it was true. Florida has monarchs year-round – an eddy from the great migration. Thank you so much.
Thanks Michael, the butterflies are a real salve for me. Lisa
Thank you for sharing your private and deepest feelings. To love is many things including honoring and respecting the spirit of the ones you love. The spirit is what will always be there even if not clearly visible or felt. You did right!
Sherif, I so appreciate your words. Lisa
Excellent piece. Your grandfathers legacy lives on reminding us all to honor the choices of our loved ones, even in death. The distant relative is often the unforeseen grit ruining a good death and occasionally scarring the living. Thanks for sharing.
Thanks Alan. Take care, L
Dear Lisa, while I am sorry about your grandfather’s passing, he gave you and your sister a beautiful gift. This is a story that needs a broader audience beyond your blog readers. Every person needs to make explicitly clear their end of life directives so they can pass to their next life with grace and dignity AND their loved ones can take comfort in knowing that they acted appropriately. Thank you for sharing.
Thanks very much Peter – you are so right. Lisa
Much love Lisa. So touching and felt deep in my heart.
My kindest condolences to you on the death of your grandfather, who sounds like a truly remarkable person.
I worked in hospice palliative care for many years, and we used to call family members like your cousins “parachute relatives” – the kind who were NOT there during the patient’s decline but nonetheless would swoop in at the very end, insisting that they and they alone were the experts on … well, everything!
That monarch butterfly story is THE BEST! Thank you for sharing your perspective on so many important end-of-life twists and turns that can happen even when we think pre-arranged plans seem pretty straightforward.
Carolyn, thanks so much! Lisa
Wow, what a life journey. Thanks for shairng it so openly. Sending you a healing hug right now! Your butterfly experience mirrors my finding a shiny penny that my dad who has passed leaves for me whenever I need him. It does provide comfort, doesn’t it?
Hi Debbie, yes, it’s those little signs that keep the smiles coming. L
Sending you hugs and warm wishes. Similar experiences at my mom’s and dad’s funerals. When it comes to the disposition of the immortal soul upon death, everyone’s an expert…. the ultra orthodox in particular
No kidding Dorit. Love back, Lisa
Grampa was such a blessing, dear friend. You are a blessing to all ofus, walking in his steps. Sending love, peace and grace…JSK
Jane, so much love headed your way. Lisa
Beautiful and beautifully written Lisa! ????
Thanks Murray!
Lisa – thank you for sharing. Your touching and timely story has struck a chord as we’ve had a living will ‘snafu’ I’ll say with my own family. Thanks for the nudge.
And here’s to finding your very own butterfly shoes. So they are ALWAYS with you.
Thanks Pam! Of course I do have some butterfly shoes….
My sincere condolences, Lisa, for the passing of your grandfather. And thank you for sharing so thoughtfully, as always. I am sure your grandmother and grandfather are very proud.
Thanks so much – very kind of you to say. L
I’ve read most of your blogs. This is, by far and away, your best. Thank you for opening up your heart and soul and sharing it with us…. even the shoes and ice cream comment that makes you flawed, but real. You have a gift in writing that impacts many. Don’t give up your “day job.”
Thanks Rick. You know you think about shoes and ice cream too 🙂 Lisa
I agree with Rick.
Thanks for sharing this story Lisa. Very sorry for your loss, your grandfather sounds like an incredible inspiration for us all, as does your grandmother.
Healthcare is only one aspect of end of life, and respecting the wishes of your loved one. Went through my own version of this, and my heart and thoughts go out to you.
Thanks Virginia – you are so right. Lisa
What a beautiful tribute, Lisa! Your grandparents sound like wonderful people. As for the Orthodox busybodies: Judaism is very clear that the mitzvot related to how you treat other people are just as important, if not more so, than those that have to do with your obligations to God; i.e., the “right” prayers at a funeral. Of course, it’s a lot more rewarding to the ego to proclaim your piety rather than practicing humility and lovingkindness. Alas.
Thank you for helping to ensure that his memory is for a blessing.
Michael
Thank you Michael, I really appreciated your note. Right is always in the eye of the beholder, eh? Lisa
Lisa,
Thanks for being so authentic as always. What a moving tribute to Gertrude, David and butterflies the world over. No doubt you are wonderful living legacy to Gertrude and David. My hope is that through the butterfly effect your words create joy throughout the world. Proud to know you.
Jon
Wow, Jon, so kind and thank you. Lisa
Thank you for sharing. This was so brilliantly written. Much love.
Thanks Liz! Take care, L
Lisa,
Thank you for sharing this story. So many of us can relate to your story and it hit home for me with my parents, as they needed care and I worked with them on their end-of-life wishes. These are really difficult conversations and hearing these stories lets us know we are not alone .
Thank you for sharing this.
How beautiful to have those monarchs bring you much needed peace of mind.
Your grandparents were lucky to have you!
Thanks Kristin! L
Good God Lisa (said the third generation atheist on my mother’s side). This soooo hit a chord given my father’s death last week. I knew the topic of this blog when you first posted it, but I couldn’t read it. It was all too raw. And now, sitting on the train back to NY I had to – and joined you in an incredible cry – – totally freaking out the guy sitting next to me. Luckily, we didn’t have to deal with any parachute relatives. What we had to deal with was one of the “great” teaching hospitals that hadn’t a clue about patient-centric medicine and where one silo hadn’t a clue what hat the other was doing. Great docs – especially the palliative care team. But couldn’t organize themselves out of a paper bag. Good thing they have a head of Innovation!! My dad was a working class guy and always called managers “damagers .” Boy did he get it right. In the end my dad just faded out in the middle of the night – BTW, if the hospital calls in the middle of the night, it ain’t good news! And in the end my dad’s pleasures had been reduced to eating the two Boston Kreme donuts I brought him every day for nine days. And in the end, he donated his body to the Mount Sinai med school. He did everything his own way (where did I get that from!!). And now, in his own way he’ll be teaching med students. Not a bad legacy.
Much love sent your way Lisa.
Jody
Jody, thanks so much for that note and I’ve been sending warm thoughts your way. This whole growing up thing is way over-rated. If you’re going to die, Boston Kreme donuts are an excellent way to go so good on you. Looking forward to sharing a hug. Lisa
Thanks for sharing this. I have found the greatest challenge in being a family member who is trying to help parents, grandparents, in-laws, etc. prevail in their “last wishes” and living wills, is the fuzzy line between extraordinary means and letting go. The boxes seem to have a permeable line between now extraordinary and and later extraordinary. My mother went into surgery for GI bleeding and came out in need of dialysis and a permanent untrainable ileostomy. She agreed to the surgery but the forever consequences and time in the ICU afterward were not what she expected. She told us to put a DNR on her record and let her go. She thought she had crossed the line of ordinary and extraordinary. We honored her wishes, contacted her minister and 36 hours later she said, “I didn’t know it was so hard to die, stop the DNR etc, and I will focus on living”. Nine months later she died. She didn’t consider her last 9 months extraordinary…just ordinary, messy life.
Your grandparents sound like they were wonderful people who loved life and those around them. Your blog post could have been labeled, ” A gentleman saving a lady in distress ends up giving his life to save her..”
Thank you
Thanks so much Sandy. Man, yours is quite a story too. Funny how these things go. I think we don’t really know what we want until faced with it. Miss you! Lisa
A wonderful tribute to your grandparents. I’m not a spiritual – or sentimental – person but the butterfly stories moved me, and reminded me of the four grandparents I also loved very much and lost years ago. My mom still “feels” her mother looking over her shoulder. Thank you Lisa for sharing and healing thoughts to you and your family.
Thanks so much Amy! L
This was incredibly moving–tears and chuckles in my office as my co-workers wonder about my sanity. My deepest condolences to you, your sister and entire family, and my gratitude for you sharing your experiences and your perspective. Now so many of us will look at (and appreciate) monarch butterflies differently from now on.
Thanks so much Sheri – appreciate your note. L
Now whenever I spot a Monarch I think of this story!
I enjoyed your piece.
Please advise what were your grandfather’s wishes regarding his burial.
Thanks Ronnie, he had some particular wishes about how he was dressed and what would transpire between his death and burial. He did not want an Orthodox burial process but many in his family did not agree that’s how he should go out. Everyone is entitled to be buried or end their time on earth in their own way, I figure. No one should impose their will on someone who is unable to protest! Fortunately the Rabbi had a clear view of what my grandfather wanted (and had it in writing). Lisa
Butterflies are known to be a common sign from loved ones that have passed. I also have experienced them and believe.
Your dear grandfather Rabbi Gordan performed the wedding ceremony for my husband and I In 1990. We knew him many years, such a kind man. May he rest in peace.
Hi Kathy and Laurence, how lovely to get this note from you! I hope you are very happy together still and thank you for remembering my grandfather so kindly. Lisa
Lisa,
I last saw your grandfather about 54-55 years ago. My family did not belong to a temple but in my religious phase I would attend services at Fresh Meadows JC. I recall him as a warm person with whom conversation provided me with some comfort. There was a 6 yr old FaceBook post that surfaced today regarding a seder at the temple that was attended by an Episcopalian priest and parishioner. The magic of google brought me here. I thoroughly enjoyed your thought provoking writing… wishing you and your family wellness in this haphazard new normal.
Stu, thanks so much for writing to me! I so appreciate the connection and the thoughts about my grandfather. Best, Lisa
Lisa- I googled Rabbi David Gordon and found your blog. Your grandfather married me and my wife Roz Weinstein on June 10th. 1972 at Fresh Meadows Jewish Center. We only met your grandfather a couple of times before he married us but we knew he was very special, taking an exceptional interest in who we were. I knew it was a long shot to believe he would still be alive. But after reading your blog and the circumstances around his death, he truly could have been alive if the circumstances didn’t happen. I was hoping to have him renew our vows as we approach or 50th anniversary. Just reading your blog gave me and my wife such a wonderful feeling and brought back such great memories of our wedding day. We hope this too gives you and your family additional feelings of how proud you should be to have had such an amazing person you could call your grandfather.
Sincerely
Roz & Jerry Weinstein
Jerry, thank you so much for the lovely note and mazel tov on 50 years! Wow, that’s amazing. My grandfather would have loved to have celebrated you, I am sure. Much happiness to you both. Lisa
Dear Jerry, thank you so much for the lovely note and mazel tov on 50 years of marriage! Wow! That’s an accomplishment. I’m sure my grandfather would have loved to celebrate it with you. Thank you for reaching out and I hope you have many happy years in front of you. Best, Lisa
Lisa thank you for sharing what you have about David W. Gordon! It will be impossible to sleep tonight.
Best,
Ben
So great to be connected! L