This project for creating someplace for me to speak the stories of my career in EOL took over a year to actually launch and when we finally published the first episode it was the softest launch in the history of launching a new website. The reasons behind that are not important right now, actually not important at all because we have now been live for several months and the site is slowly growing and being discovered. Ben Leroy, a partner in Collaborist.org and the person who helps manage my website said it was quite unusual to launch on a Sunday and the fact that it would then be subsequent Sundays that episodes would be made available, worried him. He hadn't ever seen anyone do that and he wasn't sure it would work.
But I have talked so often about how my own mom dying was how I got here; to launch this project, to see it take it's first breath on Mother's Day just felt right. But I have not shared her story and today I would like to do that.
The call came the night before Thanksgiving1999.
“Mom's cancer is back, Sean. We've been waiting for conclusive results from tests before calling the rest of the family. It's pacreatic and has already spread. It's bad. The doctors don't think she'll see the New Year. You need to come home for Christmas.”
On the phone my sister Shannon was crying. I was crying. My husband and daughter knelt by my side waiting patiently to hear what it was that had me so upset.When I got off the phone I told them what little I knew and then I cried some more while Greg held me and Shelby sat quietly beside me.
Mom and youngest sister Shannon were in Laguna Beach where our only brother also lives with his wife Kim. Another sister, Melissa and her family are in Northern California and a third sister, Tara, lives in the mountains of Virginia. There were numerous calls back and forth and within a few days all the arrangements had been made for everyone to be in Laguna for Christmas.
The doctors all agreed that she would die within 6 weeks, but from the moment of her diagnosis, she was determined to live her dying long enough to finish what she needed to finish. She made a conscious decision to stop eating meat, processed foods and sugar. She stopped drinking any alcohol. She started taking daily supplements of liquid vitamins and minerals. She declined any treatments from the oncologists but allowed a stint to be placed by-passing her pancreas because it was almost completely dysfunctional. And, she started to feel better. By the time we all arrived for Christmas some of her natural color had returned and she was moving around without too much difficulty. She was thin and she was tired but she had that sparkle in her eye that we all knew and loved.
It was a Christmas to remember. Not only had we not all been together for Christmas in years, but we had never been together for Christmas with such a weight on our shoulders.
Mom had spent many sleepless nights in anticipation of the opportunity to have us all together. She had a few things she wanted to tell us. So, she would 'hold court' in her bedroom with all of us crowded onto her bed rubbing each other's backs or feet. We'd cry and laugh and cry some more and always end up on the laughing part. Those days of Christmas were spent in laughter and tears and quiet moments of reflection.
Shannon's wedding date had been set for October of 2000. The doctors told Shannon if she wanted mom at her wedding, she needed to move it up to January. Shannon said she would move it up to March but not one minute sooner. She and her fiancé, Joe, were planning the wedding of their dreams and mom had been on board from the start. She was as excited about the two of them getting married as they were. We all felt like if mom had something to live for, she'd do it.
The wedding became the focus of everyone's attention. In the following two months many trips were made to California from our home in Co for long and short weekends. Always, the excuse was something to do with the wedding. No one was fooled for a moment that the real reason for the trips was so I could see, be with, spend time with, talk to and hold, my mom. She hadn't been married to her husband, Cameron, for very long but he never complained or tired to keep her attention on anything but whatever it was she was focusing on and most of the time it was her kids.
She grew more excited by the day for Shannon and Joe. She stayed up late at night helping to make party favors, address envelopes, plan menus or just laugh and joke with us girls. She glowed. She was getting tinier and tinier and more and more beautiful every day. She never complained. She was excited about seeing some of the people who were coming in for the wedding. She knew now, that when she saw people it was often for the last time and she tried to always make the most of it. She didn't hide her condition. She used the opportunity to talk about about how she felt about life and ultimately how she felt about death. We all grew emotionally through her wisdom and strength.
The wedding day came and went. Mom and Cam took off on a cruise to Mexico. It had been one of her last wishes. My brother, unbeknownst to them had upgraded their accommodations to first class. They were thrilled but mom spent most of trip sick in their cabin. When she returned, her stint was 'roto rootered' or somehow fixed and she started to feel better again. The doctors were all amazed.
A family reunion was being planned for mom's side of the family in the mountains of Virginia for July. When she returned from the cruise she decided that would be their next item of business. It would be her chance to visit her homeland, her family of origin and give her a chance to say farewell to people she had grown up with and loved her entire life. But she had a few details to see to first. One was writing a lagacy letter to her children and dearest friends. And another was dealing with her property.
She had owned and lived in a beachfront condo in Laguna for years. Because she had been the executor of estates for elders who had died, she took the lessons she had learned the hard way and decided to spare us the difficulty of liquidating her estate. She basically did it for us. She sold the condo. She made a will, spelling out in detail what we had all agreed to during the hours we were lying in bed with her over Christmas. She searched and searched with Shannon's help for just the right home to come back to from Virginia. She found what she wanted, she signed a six month lease, she paid the lease in full. She had been searching for a place to die and she had found it. It was quiet and private and beautiful. She and her husband furnished it with things they loved from junk and consignment stores and rented Cam a grand piano. He played the piano beautifully and he filled their home with music she loved everyday. Then they left for Virginia.
Of course, we were all there. Not something we thought we'd do in our wildest dreams. But it was another opportunity for us to watch her in action. She was mastering this dying thing and we were all just along for the ride. She was the epitome of Grace and courtesy and loveliness. She was peaceful and glowing and present every moment. But we knew we were in the final stages of whatever else there was for her to do this time around.
By the time she returned 'home' she had weakened considerably. She was living on a steady diet of pain killers and anti nausea drugs. She couldn't keep food down. My first trip out after the reunion was in August. I went alone. Shannon and Kim had been taking turns staying with her during the day and going home at night to sleep. For the days I was there, they both worked at their jobs during the day and came in the evenings to have dinner with me and sit with mom. Their husbands joined us every night and everyone was usually gone by 9PM.
Mom had been talking about a doll house she had stored in Michael and Kim's garage. It was a big bare bones ply wood doll house and for some reason she was fixated on it. We'd all been reading various books on helping people die with dignity. It had become kind of a joke because mom was showing us every step of the way what she needed us to do, all we needed to do was watch and listen to her. And right now, she needed us to get that doll house and bring it to her. So we did.
First she needed it painted. Blue. With white trim. Her husband, Cam, was also an artist. Naturally the painting of the house was his job. By the time I came back for my next visit, this time with, Greg, Cam had finally painted it the right color blue. She would say, ”No. That's not quite right. A little brighter. Or darker. Or bluer.” At any rate the house was painted and we were ready for our next assignment.
Shingles. She wanted the house to have a shingled roof. Greg and Shannon poured over the yellow pages of Southern California and finally found a shop that specialized in doll houses. They were gone for hours and when they finally returned they had sacks full of items for building, decorating, furnishing and finishing doll houses. Mom was ecstatic. She was possessed, so we all became possessed. Greg and I stayed up all night gluing shingles one by one on the gables and roof of the house. Greg built a chimney and covered it in brick paper. There was a porch across the front of the house but no steps so Greg built steps. Each time something was completed we would carry the house from the den where we were working on it to her bedroom so she could see what we'd done and she would reward our efforts with all the excitement she could muster and that beautiful, winning, all knowing, smile.
And then she told us she wanted the house decorated for Christmas. The memory of that moment is one of my saddest. Christmas was mom's favorite, best, time of year. I knew, somehow, that the dollhouse represented something much bigger for her than any of us could be aware of or could ever hope to understand. But what I knew in that instant was that she would not be alive for Christmas and when this doll house was ready, she would be too.
Greg found tiny battery operated white lights. We hung wreaths on the doors and placed a miniature Christmas tree inside the front windows. The house was beautiful. We moved it permanently to her bedside where it took up almost an entire card table.
It's late October of 2000. Hospice has been involved now for about 3 weeks. When Greg and I left it was with a clear understanding that I would be returning on Nov 2 with our daughter Shelby. A few months prior I had told mom how much I wanted to be there when she died. I told her I thought there was a pretty good chance that she would know when her time was near and if it wasn't too much trouble and if she didn't mind my being with her, I wanted her to let me know and she said she would. Then on my next visit we had a long tearful talk and I told her how selfish I felt I was being and that I didn't want her to feel like she needed to wait for anybody. She was so powerfully intuitive and thoughtful. She let me talk and then she just smiled through her tears, not saying a word.
Thursday November 2nd 2000. Shelby and I arrive into John Wayne airport minutes before sister Melissa arrives in from Sacramento. We drive to mom's house together. It's dark. She's lying in bed waiting for the sound of our voices. We all fall onto her bed, hugging, all of us talking at once. She hugs each one of us. She's so happy we've come. The doll house, relocated right next to her bed, is still beautiful. I have brought lace curtains for the windows and gas lanterns for the “lawn”. We visit for a short while and then she kisses each of us goodnight. “We're going to have such fun!” she says. And again tells us she's so happy we have come.
Friday morning Nov 3rd.
Mom is sleeping.
We wake and move quietly about the house finally settling in her room. Shelby reads in the bed next to her, Melissa reads stretched out in a lazy boy nearby and I'm sitting beside the bed putting the final finishing touches on the dollhouse. I hang curtains in the windows and I hang a porch swing on the front porch.
And still, mom is sleeping.
Around 3PM the hospice nurse comes. It surprises us all that it has gotten so late. We realize that mom has, for the first time, wet the bed. She has said all along that she does not want anyone to have to have to change her in diapers. She has gotten up through the worst pain and nausea to make it to the toilet to pee, even though she usually had to vomit once there because of the effort and the pain.
So now she has lost continence of bladder and the hospice nurse says this is when we decide whether to insert a catheter or put her in adult diapers. It took only a moment to decide that in spite of what she'd been telling us, we wanted her in a diaper because it would allow us to have to care for her in the intimate loving way we wanted to. If I had that choice to make over, I would definitely have chosen a catheter knowing what I now know about urine retention in one who is dying.
The next hour was spent with the nurse teaching us how to bathe and change her. She would startle occasionally at being lifted or moved but she continued to sleep. We changed her bed putting fresh flannel sheets on. We washed her and brushed her hair and dabbed her with her signature scent, Channel#5. She was radiant. It was dark when the nurse left. The other kids would arrive soon.
Mom is still sleeping.
6PM The room is lit by candles and the sweet white lights of the dollhouse. It is quiet. We are all in her room talking about the day. For awhile we whisper but then we are using out normal voices and telling stories and laughing.
And Mom sleeps.
I had brought a book I wanted to share with my brother and sisters. A children's book by Cynthia Rylant titled Dog Heaven; a children's book about what happens to dogs when they die. It's beautifully illustrated by the author and shows an amazing heaven just for dogs. I had recently been reading it after lunch to my classroom of toddlers. We are all crying when I finish the book and Shelby, who is lying on the bed alongside mom, says, “Look you guys! Grandma Mimi is crying" .
There is one lonely tear traveling down her cheek. She doesn't speak. She doesn't open her eyes.
We all stand and gather around her bed holding hands. We speak to her gently and with love; telling her we love her; telling her good-bye.
The dollhouse is finally finished.
And mom is all done sleeping.
The song Calling All Angels begins to fill the room. Cued up all afternoon on the CD player, we had all agreed it was what we wanted to hear at the moment she died.
I don't remember a lot of details immediately after that. I'm sure there were phone calls and then I remember the nurse appearing again and speaking to all of us about what needed to happen next.
When the Funeral Home van arrived, the nurse encouraged us to all go sit in the open space of the neighborhood where she had rented her home. We could see the ocean and we could see the moon. We sat near a tree that was the only tree in this vast expanse of grass when all of a sudden a large owl flew across the open space and perched in the tree above our heads and just sat with us. We were in awe and of course immediately assigned meaning to it that it was her spirit animal and that she was with us. One of the things she had said to us in her legacy letter was that she would try always to be an angel in our lives but she knew for certain she would never be farther away that the nearest breeze. There was a gentle breeze on the hillside that night.
So, I hope you now understand how grateful I was to my team for getting this project launched on Mother's Day.
This is Sean Jeung. Thank you for listening, thank you for supporting these podcasts with cups of coffee on the website and I hope you will join me again, where the veil grows thin.