Casper's eulogy, with love from Jill

Who knew 3 years could bring so much happiness? So much love?

Okay, actually 3 ½ years. And even a little more than that… But we won’t talk about those early months. We’re in church after all, and the kids are up front…

When I started trying to write this eulogy for Casper, I couldn’t figure out how to approach it. There are so many ways I think she should be remembered, and that Jay and the four kids think she should be remembered. So I’m going to share our story, and Casper as all of us knew her.

Here goes.

When I first met Casper, I was totally intimidated.

She walked up to our door to be Linda’s nurse, and she was dressed head to toe in black. She was driving a black SUV with the most incredibly organized set of drawers and supplies I have ever seen.

Her shirt, pants, even her shoes were black. Over all of it was the whitest, neatest, most thoroughly ironed lab coat I’d ever seen. The creases ironed into it were perfect. There was a back-up lab coat, also ironed and hung on a hanger on a specially designed rod over the drawers.

Linda’s regular nurse was sort of a poofy, sweet, glitter and jewel tones kind of person. Flowery scrubs, bedazzled shoes,.. you get the idea. She was holistic, tofu, no white sugar and no red meat. No meat at all, actually. Linda was, well, M&M’s and Ben and Jerry’s and filet if she could manage it.

Casper’s first words to me were “It’s the man in black’s birthday. You can call me Casper. I’m Linda’s nurse today.”

What? The man in what? A nurse named after a ghost? There I was- at a total loss for words. Can you imagine? Ten minutes later the two nurses in my life were already becoming friends. I was told by both of them my presence was no longer needed. M&M’s, BBQ,  and Ben and Jerry’s were on the topics of favorite things and stuff they could, and did, share together. Eventually they added life, love, getting Casper through her RN as Linda had done, the kids.  

How’s that for an introduction? It wasn’t until the end of Casper’s illness that I discovered she was equally intimidated by me. After she’d been on morphine for a while she also admitted she thought I was cute- but that she shouldn’t feel that way so she toughened up around me. I also didn’t know was that she and Linda were developing their own deep friendship, and that I was the subject of lots of conversations. Neither one ever fessed up to the content. I am glad I will never know now.

What mattered was that for Linda, Casper was the best nurse she could ever have- one who could match wits with her, argue over using her walker- “No, you can’t be using it if it’s across the room. If you were using it, it would be next to the bed” “I know you prefer your cane, but you NEED your walker.” Casper helped her to come to terms with her illness and  coming death. Three years later those lessons came back to Casper to help her with her own illness. Casper also refused to use her walker, never tried a cane, and told me the wheelchair was for sick people.  Great minds think alike.  We decided at our house that Linda was coaching Casper into bad behavior.

My Casper was the loving partner who then picked me up after a devastating loss and held me tight. Who showed me that I could smile again. Actually, smile a LOT again. Casper shared my loss and made it part of a new beginning for us.

My Casper was the tough butch from North Carolina who was actually a marshmallow, Who opened every door for me and treated me like a princess. Who worried when I wasn’t home on the dot, and never quite learned that social work standard time is even worse than island time for accuracy. She had me call every evening as I was leaving my office to walk me out by phone, and wouldn’t hang up until she heard the car start and the drive engage. My Casper also hung onto the silly notion that she should be the driver in the family. That resulted in a nerf gun in the car and my backseat driver’s license being revoked on a number of occasions. It also ended any notion of driving to North Carolina. Casper decided she’d rather fly than sit next to me in a car for five days. And even after a nerf gun moment, when we arrived at our destination, no matter how bad a day it might have been for her, Casper was at my door, because I was indeed her princess.

Casper was willing to marry- three times!- a woman with three teen girls. That should say everything about her love, sense of humor, and why her “Casper look” became standard at our house. She did so even after my best friends tried to warn her off for her own good, and her best friends had to make sure I was good enough for their Casper. I was told that I had to pass muster by running a gauntlet at hospice. If I didn’t make the grade, they were going to protect her from me. No stress there! (And mary, Kathy, Annette, Adee, Susan, Sherri- thanks for the approval.)

My Casper was the romantic text messenger who met me every morning at Starbucks on La Sierra when we both ran away from work to spend fifteen glorious minutes away from prying eyes and curious teens. And my Casper was the one who took on those teens and helped turn some things around. Chloe describes it as needing some “Southern Whoop Ass” to lay the law down. She also said that Casper showed her that love and discipline and high expectations could help her turn her life around. And did. All of the girls knew the Casper look, and all of their friends were universally afraid of it. There were smiles and laughter, and joking, and bbq’ing together, but if there was a boy who did not belong, or someone was late getting home, or the wrong language popped out- they knew that look.

My Casper was the one who told the girls to call at any time, and who provided Mom stuff they needed not from mom. “Advice without attitude” is what she called it. Who showed up on nights I worked late when the kids were lonely soon after Linda’s death. There were medical emergencies that were really just kids needing to know who they could count on. It didn’t matter that it was 8pm, that she lived in Redlands, that she hated driving at night. I would arrive home close to ten pm to find her car in the driveway, and her surrounded by the kids, problem resolved, but unable to leave because she was becoming their Casper, too. Those nights were especially hard because when I walked her to her car we had three chaperones with eagle eyes and spock ears. Those nights also showed us that we could be a family with the kids,

Our Casper taught the kids that vegetables should be fried, not steamed, that biscuits didn’t need to come out of a can, that coleslaw was awesome when it was homemade, and even better than the stuff from KFC. Until she got too sick to remember the recipes or cook, Casper made Sunday dinner a tradition, one that the kids would beg to bring their friends to. Birthday parties lost their pizza menu and gained “OMG Casper’s barbecuing- you can’t miss this!”

There are so many other Caspers. I knew about some, and I’ve learned about others these last two months as nurses who worked with her came to spend time caring for her. I learned she was the nurse who carried candy in her pockets and who got down on the floor to play with employees’ children at their level. Who knew Casper would actually share her candy? Did I mention she had an entire dresser drawer filled with chocolates and Jolly Ranchers?

She was the friend who would stop by a fellow employees’ home to bandage wounds and make things better on her own time.

She was the nurse who spent her days off playing with terminally ill children without families in long term care homes, making sure they had special time.

Casper was the nurse who, after she retired, would make trips to West Covina to see a beloved patient and take in lunch when she could barely function herself. She scared me to death doing so, because she would take off while I was at work, and then call for directions from a freeway. But she always got there, and home. And she smiled because she got away with it. When I told her Dr. Mall told her not to drive, her response was that she would quit when she knew she needed to. If I pushed it, I got the look. Then I heard “Dr. Mall, Dr. Schmall. What does he know about my driving?”

Casper was the nurse who actually quit a job to take a patient home who was being forced into a nursing facility. They were the same age, and her family abandoned her because of her sexual orientation. Casper found another job and worked full time while caring for Amy in her own home. She made it possible for Amy to die in a warm environment, not a nursing home, and then Casper took care of her final needs, too.

Casper was the big sister to her brother and sisters. She wasn’t the oldest of the nine, but she worked from the time she was tiny to help her family, and she never stopped. She made sure when things got tight her family in North Carolina was taken care of. That friends here didn’t go without. She skipped vacations and trips to make sure there was enough to go around. For Casper, family was, simply, everything.

Casper was the sister who took her brother Jay almost everywhere, and despite stealing a girlfriend or two from him- to his great relief- she kept Jay close. They lived together many times, and they were best friends, siblings, soundboards for each other. Casper adored Jay. He was really the son she never had. Jay- I can’t thank you enough for coming to help Casper these last months, and for becoming the best kind of uncle the kids could ever ask for. You made her SO proud of you. You are the best brother I could ever ask for. And everyone here loves you for what you did for her and the entire family. You alone made it possible for us to keep her safe at home, and to take some of the stress off the kids. And just for the record and all these witnesses- you may never ever leave. The kids and I took a vote. We’ll sponsor vacations in North Carolina, but we are keeping you, and the kids are chaperoning the trips so you come home.

When Casper and I finally admitted out loud and publicly we were an “us,” after sneaking around a bit, Casper needed to make a stop at my mom’s house. For her it was mandatory that she ask for my hand from my mom- because if she was going to marry me, she was marrying the whole tribe. She clearly had no idea what she was getting into. My tribe was a big one, and slightly this side of crazy.

Yes- admit it. You know who you are.

But my tribe became her tribe, and welcomed her. Thank you- you know who you are. she knew she was in, although it stunned her that friends really cared about her. She had a few dear friends, and they are here today, but my crew also opened their arms to her, and she could hardly believe it. I know more than a few of you told her in one way or another that if she loved me and the girls that much, you loved her right back. Wendy, I think you actually said those exact words. You might not know it, but that was new to her. Birthday parties were new to her. Making her feel loved and important and cared about- except for her family, that was new to her. All of you here- thank you. You taught her and showed her that she mattered. That was such a gift to her you will never know.

My Casper was not political when we met. Imagine- Jill with a non-political non-activist partner. Yeah- that could never last. She registered to vote mostly because I tormented her. Mercilessly. But then something happened. She got it. She watched “Milk.” She watched the Prop 8 court battles. She started to feel it. Because we’d had a ceremony, but it didn’t count legally. And then the symptoms started, and we knew something serious was wrong. Suddenly Casper wanted to be legally married. And she wanted her own voice, not mine speaking for her. She was so proud of going to vote with Kerry. Her mind was already failing, but she was able to follow the instructions and have help, and-- she voted. Then she made sure Kerry voted. She helped to organize a rally celebrating the end of Prop 8 at the Supreme Court. My Casper- at a political meeting organizing a rally. Six months later, Casper was out on the street celebrating the death of Prop 8 and the right to marry when we finally got it back. My non-political Casper was in the newspaper with a sign saying “Most people just have to ask their parents to get married. I had to ask the Supreme Court.”

In her final weeks, when her brain was battling the Lewies, she was still connecting to her family, extended family, and newfound love of activism. Dementia can have a lot of funny moments if you keep a sense of humor, and we did. She spent one night listing all the people who visited or were part of “the group” of couples we spent time with She noticed that many were lesbians. In fact, most were. She looked smug in her confusion from her hospital bed, and said “Yeah, that’s right, we’re taking over the world!” One hospital bed at a time- and she was so proud and happy to have so many people she knew she could count on. She tried to recruit a couple of nurses too. That didn’t work out so well. We never told her.

My Casper was the woman who stepped up to parent Kerry, Charity and Chloe. There were a few moments that didn’t go over quite so well. Actually, there were a lot of moments. But my Casper was also the one who showed them that she loved them, and who, at the end of her days, called them each to speak to her in her hospital bed, and told them how proud she was of them, her wishes for them, how much she loved them. Not many kids have had to endure the kinds of losses our kids have- but not many have had parents who loved them exactly as they were and such a large tribe surrounding them. Casper shared stories of growing up with very little to eat and long hours at work, and tried to instill a sense of gratitude that I have seen in these last very difficult weeks. Our Casper was that difference. Girls, she loved you. Completely. You were hers, and she did not want to leave you. She fought as hard as she could. She knew you needed her as much as I did. And she was so incredibly proud of each of you just the way you are.

On the day of our first wedding, Casper told Jay that she finally had what she’d been looking for her whole life- a wife who loved her and respected her, who valued and cherished her. A family who loved her not for the stuff that she could do and bring, but for the stuff that she was. The strong partner, the strict and loving parent who could listen and guide. She was finally “home.” The word she used was “Content.”

That’s what I want to hold into as we mark Casper leaving this world for the land where her angels lead the way. I want us to remember her for her sense of humor. For her jokes, her insistence that lunch was dinner and dinner was supper. Her love of holidays and celebrating them with decorations absolutely everywhere, both at home and at work. Her karaoke skills that included singing “You had me from Hello” to me in a crowd with tears in her eyes- and then in mine, her absolute relaxation when we arrived in Hawaii. Traveling with her to Hawaii, especially before she quit smoking? Not so much fun. Arriving to warm balmy air, flowers, ocean, whales, birds, rainbows… and shave ice? That was as close to heaven as Casper could imagine. Until this week.

She had the guys at Local Boys Shave Ice trained. They never asked a second time if she planned to share her papa sized ice. Not the first or the second ice of the day. One look- one Casper look- and she had a large serving, three colors, ice cream and cream, waiting for her. Because our Casper loved Island Time. Cell phones that didn’t work so well. Slow paces, Shave ice. Whales and turtles. Our Casper made sure she was the last served and that the kids had theirs. Then it was her turn. Our Casper could sit for hours, binoculars in hand, watching every whale spout, tail flip, and breach. She counted the crowd and tracked them as the pod moved. She never learned to swim and was afraid of water- but not the beach in Hawaii. There it was as natural for her to be at the water’s edge as anyone else. Hawaii transformed her.

I didn’t know until last week that Casper had always longed to see Hawaii, but could never afford it. Someone else always came first. Her dreams waited for other people’s needs. Until we went, and it became a part of her. Even when she was having trouble walking and with balance she could sit and watch the ocean, and her whales. She could lay down to combat the Lewies and still relax to the sound of the waves and the sight of her whales. She delighted in the flowers, the scents, the people, the pace. It was warm so she didn’t hurt, and she relaxed more. That Casper is a memory I will always hold in my heart- smiling, relaxed, Totally at peace in her planet. I know all the girls will too.

I want to close with some thank you’s that need to be made. If I miss anyone, please forgive me. It has been a long week.

Casper fought a long and terrible battle with Lewy Body Dementia, and for most of that time we didn’t know it. It’s difficult to diagnose, and impossible to treat. We were hugely supported during that time by the Traub Center at Eisenhower and the Parkinson’s Support Group here in Riverside. We’ve received notes that there have been donations made to fight Lewies in the past few weeks. There could not be a better way to honor Casper. Thank you to all of you.

Casper and I tried to make work-life balanced as her dementia progressed. It’s hard to be homebound and to have difficulty even getting outside. You tend to see your world shrink. Those of you who took time to spend with her, to argue and bluster like old times- you made her feel like she was still vital. Kathy and Mary especially- thank you. Those who made it possible for me to work and still be home- I cannot say it enough. The girls in the hub at Companion who emailed stuff and kept me on track- you really did have my back. The nurses who tolerated me zipping home – thank you. The staff at Companion who cared for Casper, and especially her nurse and doctor- I really don’t have a way to say what needs to be said. The day Casper passed Jenni was off sick, and still answered dozens of text messages. We woke Dr. Mall at 2am when nothing seemed to be working to look for answers that nobody had- and he tried to make things calmer.

You may not know this, but Casper would repeat your names over and over, and she would tell me to call you, because you could fix whatever was wrong. She trusted you both completely to help her. That alone sometimes eased the agitation, and you know how much that meant. My colleagues and best friends at our counseling center- Casper knew I was missing work there but needed me home, and having her at the office could be hard to manage. Thanks for making space for our time to say goodbye. Crackhead- your matzo ball- it still has magic. The Girlfriends- you sent hugs I didn’t know I needed, you listened to my private pity parties, you stood by me again. And Wendy- Casper stopped thinking we were having an affair. I promise! All of you who came and sat with the family in the last weeks as they wore on- we all owe you. I haven’t had that many sleepovers since I was ten years old. I am so blessed that in my world, and in Casper’s, when someone says to call if you need them they really mean it. My mom and sister and cousin stepped in as they always do, lending a hand and finding ways to make things brighter for the kids. Casper was well aware of it, and I am grateful for it.

The final thank you is to the kids- all four of you. Only you guys know all the stuff we have all been through as a family. You each made Casper a part of your lives. You each loved her. That meant everything to her. It meant even more to me. I am so sorry that two months after such a happy day together we are here celebrating Casper’s life, not planning our next vacation to Maui. You all pitched in to help in so many ways. Your friends did too. You’ve had more loss than many adults here, You’ve grown into young women I am so proud of. Casper was too. Hold that in your hearts. Treasure every moment life has to offer. Learn from us what commitment and love really mean. Go from here today and make all your moms proud of you. And remember… Casper believed in angels, and she can still watch over you… and growl when necessary. Remember that always. Especially in private… Casper watching. Got that image? That look? That Southern Whoop ass attitude if you should not be doing something? She loved you. I do too. Turn to the people around you here today when you are sad. We have a lot to miss and to grieve. But remember Casper’s smile, her love of life, and how much she wanted for you.

Thanks to all of you for being here today. Please enjoy the shave ice afterward- and make Casper proud of you. The more colors the better!