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!

 

 

 

 

Casper's obituary

Kathy Johnson-Casper (Kathy Casper), known to all simply as "Casper," passed away Monday, December 9, 2013 after a valiant battle against Lewy Body Disease. Casper left this world surrounded by those who loved her.



Casper was born in Bethel, NC to Lois and Clyde Casper on 12/28/55. She was preceded in death by her beloved Aunt Myrtle, her parents, and her brothers Tommy, Danny and Timmy. Casp...er is survived by her loving wife, Jill Johnson-Casper (nee Johnson-Young), their daughters Kerry, Charity and Chloe, her siblings Teresa. Tammy, Sandy, Jay and Clyde, and her nephews and nieces and great nephews and nieces in the Greenville NC area. She is also survived by many dear friends Casper made as a hospice nurse in the Inland Empire, and Jill's extended family, who loved Casper as one of their own.



Casper finished school in the Greenville area. She worked in the tobacco fields of North Carolina as a child and teen, worked in factories and in restaurants, then entered road construction as a career, where she operated a road grader. Casper completed her LVN at Concorde Career Institute in 2002. She was a hospice nurse because she believed in the idea of allowing patients to maintain their dignity and comfort in their own homes at the end of life. Casper worked for the VNA and Companion Hospice. She was forced into retirement by Lewy Body Disease symptoms before it could be fully diagnosed. Casper was also a pediatric hospice nurse, and loved the children she cared for, spending time off with them just because she knew they needed a smile. Casper took craft kits to homebound and institutionalized patients and remembered every holiday for them. She loved being a nurse and she took her role seriously in providing comfort and support for families.



Casper was the hospice nurse for Jill's late wife, Linda. The two of them became friends, and Linda asked Casper to come back into Jill's life after her death to pick up the pieces and help finish raising the three girls. Fortunately, Linda was right, and Jill and Casper found love and commitment and caring in each other's arms. Casper and Jill held a domestic partnership ceremony in Riverside on 6/5/11. They had a Civil Union in Maui, Hawaii on 1/31/13. They were finally able to be legally married on 10/12/13. Casper used every bit of energy she had to make that day special, and they celebrated a magical wedding together that was fully legal with their children and family surrounding them.



A Celebration of Life will be held at noon on Saturday, December 14, 2013 at First Congregational Church of Riverside, on the corner of Mission Inn Avenue and Lemon Street. In keeping with Casper's belief that angels walk amongst us and that death is not the end of life, the family asks that those attending come prepared to celebrate Casper as she was. No dark colors, no sadness. Bring your Hawaiian prints for the place she loved most of this earth; your whale and ocean colors for the magnificent creatures she loved to watch in Hawaii even when she couldn't walk well enough to get outside; the colors of tropical flowers and memories of the Casper who loved pranks, Halloween, Christmas, children, family, and friends.



Jill would like to thank her friends and family both in California and North Carolina for their support as they struggled to find a diagnosis for Casper; the Phillip and Carol Traub Parkinson's and Movement Disorder Center at Eisenhower Medical Center for their loving care; Companion Care Hospice and especially Dr. Anil Mall and Jenni Papp, RN for trying to make Casper's last journey comfortable; Jay Casper, for giving up his employment, home, and life in NC to care for his beloved big sister in Riverside; Jill's co-workers at Companion Care Hospice and co-owners at Central Counseling Services of Riverside for their flexibility as Casper's fight with dementia wore on; and the family at First Congregational Church for your love and for making Casper a part of the family. Jill and the girls would also like to thank the Casper family in NC for welcoming them into the family and for believing in the decisions being made for Casper's care. The girls know they have a new and loving family with arms and hearts around them.

My Casper

12/28/1955- 12/9/2013

Smiling once again

The angels finally came.

The last 36 hours were the worst ever for Casper. The final hour was peaceful.

 

She left this world at 4:33pm, after the most courageous, furious, steadfast, dig-in-your-heels battle I have ever witnessed, much less been a part of. The Lewies finally, at long last, lost.

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And so did I.

 

I lost the love of my life, the woman who could make my heart skip a beat just by smiling my way. I lost a future together.

 

Casper lost her life to the damn Lewy Bodies. My loss is nothing in comparison to hers. Casper lost the ability to walk, to think at times, to live without terror from delusions and hallucinations, her role as a nurse and breadwinner, her very important vision of herself as our protector and provider. Casper lost her identity to that hateful disease.

 

She spent the last 7 weeks in bed. She spent 36 days without food. She went 8 days without fluids. And still she fought.

 

The last 36 hours she was on huge doses of morphine. She had a sedative drip that should have put her under for a long surgery and recovery. She endured injections every eight, and then every six hours. Her pulse raced, her breaths were at a speed I could not fathom. For endless, endless hours. Her blood pressure and temperature could not find normal.

 

There was conjecture that she would not let go because she had stuff left to do. That she would not leave me behind. I'm going to ignore those ideas. Casper said all she needed to. She talked with all of us. She said her goodbyes. She wasn't afraid of dying. She missed her parents and aunt and wanted to be reunited with them. She saw and talked to Linda. She was tired of being bedbound.

 

She wanted to go home. We released her.

 

The Lewies wouldn't. They were so busy reorganizing her brain that she could not leave this world. She couldn't respond normally to morphine or versed. She couldn't settle down for haldol. (And yes, I am fully aware of Neuroleptic Malignant Syndrome. I signed for the meds. I asked for them. Anything, anything at all, to stop the fear and anxiety. I would do it all over again without hesitation.)

 

Her brain literally wasn't processing her meds; neither was her body. That's an unscientific conclusion, but it's based on what I just lived through. 36 hours of agonizing symptoms that would not let her go home.

 

Despite all of the meds, with pupils that were no longer reactive, she was talking in full sentences until yesterday morning. She could describe her pain, where it was, how it felt. She told me she loved me. Repeatedly. She knew our code for a long and romantic kiss. She could tell us it hurt. Meds were increased again.

 

Until close to 4pm today she was breathing so hard anyone else would have passed out. She wasn't communicating, but she was, somehow, despite it all, still battling. Then, finally, she had a slow down. Her breathing slowed. Her pulse. Her blood pressure. Thirty minutes later she was gone.

 

Just like that. She was in my arms and she was gone. It was quiet, and my love was with the angels she saw and talked to and knew would come for her.

 

I bathed her with a hospice nurse. I dressed her. The mortuary came and I held our Fuzzy as I walked down after her. Fuzzy was grieving and has still not lifted her head tonight.

 

I followed her to the street as the van left. My heart left with it. I had my dearest friends around me tonight. I have no idea what we said.

 

I remember Casper's cologne as I walked back into our empty, suddenly quiet room.

 

Her smile on our wedding day.

 

The sound of her voice telling me she loved me.

 

The Lewies cannot take that away. 

Coming to ending despite the Lewies

It's Saturday, December 7th. Pearl Harbor Day. Casper has been bedbound for more than six weeks.
She hasn't had food in almost 36 days.
Her last drink of water was a week ago.
She's still here.

Why?

There are theories: she's too young. Her heart is too healthy. She has no other health issues. My favorite? "She's not ready to die."

The reality?

Casper isn't afraid of death. She didn't want to die and leave me and the kids behind, but she was never ever afraid of death. She was terrified of being bedbound, lifeless, and unable to remember those who loved her. That was what she was afraid of.

Casper was talking until this afternoon. She could still tell me, and her brother, that she loved us. She still kissed me- and meant it. But she's also been agitated. Uncomfortable. Her breathing has been ragged and course and hard to listen to. She's needed suctioning and meds to dry secretions, more pain meds, more sedatives. Her vitals are up and down and all around.

They are the Lewies' last revenge. The evil Tribbles inhabiting my Casper's brain and causing her death are causing chaos as she tries to die. She can't find a way out of this world.

Casper can tell me that she's seen her parents and her Aunt Myrt and Linda, and they are waiting for her. She's said she wants to go. But her body can't follow. She's laying in the hospital bed, stressing for air. She's on high concentrations of oxygen and her doctor has doubled her meds today in an effort to make it better for her.

Nobody can defeat the Lewies. And they won't let her go.

We have said our goodbyes. Her family and friends have as well. Still she grips my hand tight, and turns to the sound of my voice, mumbling occasionally in response.

I hope someday this awful disease will be better understood. That some researcher will unlock its codes so it can be defeated. At the very least I hope it will prevent fewer families from having to decide individually about the need for sedation and the guilt that comes with that. That pain can be better managed because their ugly little paths will be manageable. That the fear and anxiety of the Lewies will not cause patients so much heartache and sadness.

And tonight I hope my Casper can finally slip the bonds of this earth to a place of rest and happiness, where she can smile again and move and not have pain as her constant companion.

Miss her? Like none of you will ever be able to imagine. Her smile. Her strong arms, Her sense of humor. Her total and unconditional love. Want her to stay here? Not a chance. Because I want her to be the Casper I remember. In a better place.

The final stages

Jay and I are sitting bedside with Casper. She is in the final hours of life. Or at least we think she is. Because this is Casper, after all. She's fooled us before. She has a will beyond anyone's imagination. She was never afraid of death, but she was not ready to leave me behind. Her role was to take care of me, the kids, and the family.

And now she has no choice, and neither do I. The Lewies have taken their toll, and tonight, or early tomorrow, they will take Casper.

Her breathing has been labored for several days on and off. Agitation has been an issue as the Lewies have continued to create distress - as if they hadn't done enough damage already. There are two CADD pumps running around the clock providing morphine and a sedative in an effort to allow Casper some peace. We've had days it's been possible- and moments of craziness. Last night the agitation was out of control again although Casper was comatose. Today and tonight it's been under control most of the time, and we have watched her slip further and further away.

Fuzzy, her ever faithful poodle, has been beside herself for days. We've had to medicate her to stop her from crying and screeching and tearing at Casper to please, please wake up. Fuzzy has clawed at her hands, licked her face, tried to breathe into her mouth- anything to make her Casper wake up and be Casper again. Just now Fuzzy jumped off the bed and refused to go back after days of refusing to let herself be moved away. We've had nurses having to do assessments with a stethoscope in one hand and a poodle in the other. Casper's nurse has even made sure Fuzzy was able to feel her petting her by holding Casper's hand and stroking Fuzzy from a coma.

And now Casper is breathing the shallowest of breaths. Her body is no longer stiff from Parkinson's symptoms. She's free of pain. We've said our goodbyes. Now we wait.

Her body, which has been varying from hot to cool in weird patterns, is cooling.

Her fingers and toes are mottled- a china like blue to purple.

Her catheter bag is empty, after draining her body of the very fluids supporting her cells.

Her skin is flaccid. Dehydration is clear.

She can still hear. We are sharing stories about her and so is her night nurse, who has known her for more than a decade.

We've watched the DVD made for the memorial and cried at the memories and the loss we are facing moments or hours from now.

I am doing all I can to memorize the feel of her body as I run my hands over her, stroking her for what will certainly be one of the last times. I am remembering the times we spent, the caring and the cuddling and the enormous love we shared. I am hoping Casper is hearing me talk about the whales and the rainbows of Maui, the joy at our wedding, the love I felt in the strength of her arms. The romantic she truly was.

And we are now waiting for the angels to take her home.

Fading...

There is a certain sacredness to sitting with someone as they fade from this life. As a witness you see them retreating back to infancy in some ways- playing with covers, "finding" their fingers, grasping fingers, not holding hands at times. I awakened to Casper sleeping soundly today after a rough night, and now we are in the gloaming ourselves.

Casper can recognize me, and the rest of us, but her eyes aren't really focusing. She responds to being told that we love her, and to familiar voices still, but her conversation other than to say she loves us no longer makes sense. She is having trouble swallowing, and we've started atropine and suctioning and repositioning her. Yesterday she could help a little. Today she can hardly move at all. It hurts like nothing you can imagine unless you have been there yourself. Dr. Mall was entirely correct when he referred to this as "agonal pain." It tears your chest into hot shreds as the tears fall.

The dog was beside herself trying to find a way to snuggle in and to find her Casper somewhere in that change last night. The pain on her face was unmistakable. Fuzzy was absolutely inconsolable. She cried, she moaned, she screeched. The only calming was holding her and then getting Casper to put her hands on her. Even poodles experience that loss and pain.

And yet, there is that sacredness, that trust that Casper has in me and the rest of us. She hears Chloe's voice and reaches for her. She leans over the bed to hold Kerry's outstretched arm. She tries to raise her eyebrows to smile for Jay, and she wants my hands in hers. Last night as the evening wore on and we could see Casper changing, Jay and I sat up late with her. Casper was only present a bit of the time, but she keyed in for the important stuff. I told Jay about our first date, and Casper refusing to kiss me because it wasn't proper. She opened her eyes wide and said "You needed to be shown respect!" Jay added that she never kissed on a first date if it was someone she truly wanted to invest in, and from somewhere deep inside Casper came her North Carolina growling "Mmmm hmmm..." Jay described the talk he'd had with her as they waited to walk down the aisle with her at our first wedding. Casper told him that our relationship was the first time she's ever been truly content and truly loved. The first time her partner's children were loving toward her. The first time she knew it was really, truly right. As he talked her hand found mine. And squeezed.

I think that was our twilight as we entered this next phase. We had time to laugh and share and Casper was still a part of it, snuggled in her nest of pillows and soft blankies and her new teddy bear from Kerry.  We made her talk as much as we could, knowing that her voice would not be a part of our world for much longer.

The house is quiet as we stick close by and sit with her on our own thoughts. In the gloaming each needs to have the chance to grieve with Casper, alone with her and with each other. We know it won't be much longer, and as much as we want Casper to be released from the ugliness that is Lewy Body Disease, I don't think any of us are ready to really see this end. I know I'm not. I also know I can't change this process.

And so I sit with Casper as she fades in and out, making sure she hears my voice and feels my hands and kisses, as she prepares to meet the loved ones she's been seeing and talking to. At some point soon her mom and dad and Linda and her Aunt Myrt will slip in, and take her with them. And I will hold onto the knowledge that for this time in her life she knew what love was and that she left here surrounded by it.

A Quiet Thanksgiving

Usually Thanksgiving is the kick-off for my holiday craziness. Craziness in a good way. I love the whole season. You won't hear me complain about a crowd for a meal- I thrive on it, and spend months planning the menu, searching for new ideas. I am still, one day, going to make the Christmas tree shaped Caprese salad with the grape tomatoes and basil wrapping in ribbons around a foil covered foam tree. And I will make my own balsamic reduction glaze too!

 

For me it's not about "stuff" or pretentiousness- it's about gathering in the people I love and making a place where we can relax and enjoy what family is.  I don't wear myself out putting on a feast. I relax every evening for the entire week before by cooking and crock potting all the sides, so the day of the feast it's all about the bbq and the bird, and making the house look festive in autumn colors. As hokey as it sounds. I look forward to the circling of hands as we all offer one idea of thanks for the year past, and the year coming. The only real stress is making room in the fridges for the crock pots as we get closer to the big day, and not sleeping it too long. Crock pots are not a good thing when they are cold!

 

Thanksgiving has included the kids, the very extended family, and Casper carving the bird in Linda's Thanksgiving turkey hat. The next day the Christmas decor comes out and the yard and house transforms into a wonderland of lights and trees and angels. Have I mentioned that I have more than 2 dozen Christmas trees of various sizes and colors? Casper loves Christmas decorations at least as much as I do. I was thrilled when I discovered that. My family loves the house being "done" but helping with it? Not so much. For three wonderful years I had a partner in crime buying ever more to make the season bright, making sure that when I arrived home the whole house was lit on timers so the dark winter nights were banished from Quartz Place. Next weekend would be the time to bring home the tree and have the neighbors over to decorate.

 

And then there is 2013. The year that Thanksgiving had to be banished.

 

The kids are off at Disney eating at a jungle themed restaurant. Others who join us have found other places to share the holiday. At 4PM my mom will join us here for take out from a local restaurant, and Jay and I will eat in shifts so Casper won't smell the food. We've spent the day reassuring her that she won't fall off the bed (it has full rails), that the dog won't fall off the bed, that the kids will be home soon, that I am not leaving... Her morphine/sedative/anti psychotic doses are all maxed out. Still, she rises.

 

Casper hasn't eaten anything in well past three weeks. Today she is taking only sips of water from a syringe. If we manage to cajole her into 20cc's it's a triumph. She's been bed bound for so long I've lost track. Spots are appearing on her skin that weren't here before. I want so badly to talk her into more fluid, into food, into a ride in the car. Then I have to remind myself.

 

Last night the Lewies were telling her there were men peeking into our windows. On the second floor. She thinks I am trying to poison her, and she is aware of it and apologizes for the delusion and paranoia she knows is irrational but that won't leave her mind. She wanted food last night. Well, not really food. A hot dog. Casper's old go-to food on bad days. I knew I shouldn't since she has no bowel sounds, but I agreed to call her nurse and ask. By the time I got home with a strawberry shake I was sure she wouldn't try she was asleep, and later she told me she knew she could not eat, and really wasn't hungry. Something was just triggering the thought. Damn you Lewies!

 

I spent last evening with a hospice family trying to cope with the illness of their teen child. They want a feeding tube, although they know, deep in their hearts, that it will never make a difference. They just need to know, especially today, that they are not withholding food and creating hunger. I so get it. I know this stuff. I teach it all day long. I can explain the dying process and that when the body is shutting down it does not need food and will cut off the hunger signal.

 

And yet here I am struggling with it myself. The Lewies haven't completely cut off that signal. The nasty little critters have it coming and going. Casper is choking on water today. Water. Even that will no longer go down nicely. The Lewies have stopped her swallow reflex. When she sleeps she gurgles.  But they have not stopped  her hunger. Not completely. Not yet. I would give anything to feed her ice cream, or chocolate, or a shake, or pretty much anything. To hold her and tell her it will be okay and we can go for that ride in the car she's been begging for throughout the last three days as she's forgotten how sick she is and that we haven't been in a car together in months. To reach out for her in the car and find her hand holding mine would be a miracle. And I would do anything to make that happen. Anything. Truly.

 

So today there will be no turkey on the barbecue, no mashed potatoes and sweet potatoes with pecans (Pee-Kans in North Carolinian) and marshmallows and butter and pumpkin pie spice, no rolls and corn casserole (for the record- green bean casserole is not allowed in this house. I do not care who you are.) Jay and I talked for the last few days. Neither of us can eat near Casper, and neither of us wants to trigger any memories of eating for her. Food is banned from the room as is talking about eating, and we are getting take-out. We are spending our day watching Casper having apnea, struggling with irrational fears, reassuring her, and trying to soothe her as we know we are watching her fade. Her coloring is different. Her skin is loose. Her nail beds are fading. Her grip on reality is too. We are hoping this last Thanksgiving for her will be peaceful, and that she will forget her hunger so we are not depriving her. We are hoping peace will soon find her, and combat the Lewies so Casper can feel our hands holding hers, and be reassured that she is secure in her nest and in her world.

 

Wishing you a blessed Thanksgiving. Hold those you love near, and tell them you care. Those moments matter.

Battling the Lewies for a peaceful end

I'm laying next  to Casper as I write this post on my phone.  "Next to her" as in she is in her hospital bed and I'm on our bed.  The two are side by side and the rail is down so we can be side by side. It's as close to "normal" as we  can get. Casper holds my hands tightly all night long.

 

Casper has not  one but two CADD PCA pumps attached to her tummy with little plastic ports that have to be changed at least every three days. There are tiny plastic tubes running from each port to a pump on  each side of  the bed. She also has a catheter because she's too weak to stand, and without it skin breakdown would be an issue.  Then there's oxygen running from a concentrator to a nasal cannula.  She  hates that most  of all (every patient does actually). Every time she turns there's something tugging.  And every bit of it is for one thing only.

 

It's the battle with the Lewies. And they are in trenches and battlements deep in Casper's brain. They will not give her any peace. I've seen lots of people die.  I'm not cavalier. Every time someone passes from this world to the next I am struck by  the importance and sacredness of that moment. I'm there to pick up pieces if needed. But it's also usually a time at the end of a decline that includes a gradual slide into the quiet.  A time where grief can happen bedside as the  patient becomes less conscious. There's a peacefulness you can feel. 

 

And then there are Lewy Bodies.  Casper hasn't eaten in multiple weeks. She's sipping water and Pepsi (she's still a Southern girl) via a syringe in teeny amounts.  Anything more and it rockets back up.  She is choking on water. I've seen patients go for a time without both food and water.  But not  like this. Her cells  are breaking down along  with her muscle. And  still she's sitting up talking at  times.

 

Casper has been bedbound for weeks. Today she couldn't recognize her weakness and kept asking to go for a walk. I had to keep telling her she can't walk anymore.  She can't leave  our  room. She can't navigate the stairs. I don't know who it hurt more. I know that memory will never dissipate for me and  the hurt in her eyes will be forever burned in my heart. It's a physical pain it hurts so much.

 

Despite all the meds at very high doses Casper's brain will  not let her rest.  She's not slipping away after saying goodbyes.  She's being put through delusions and hallucinations that are vivid and scary.  She's aware she's not eating and drinking but stops the fluids because of the symptoms that are caused simply by drinking, and because she  really isn't thirsty after only a few cc's moisten her mouth and throat. I've watched many early  onset Alzheimer's patients die.  None were aware of  their family or  their surroundings. Casper comes to and knows she's been delusional. It terrifies her. Now she  won't sleep because she's afraid of  what's happening next. Her startle response has a hair trigger. Nobody should have to bear that in  their last days. The Lewies apparently insist upon it.

 

And so tonight we are well  past Day 21 of Casper being bedbound. Anyone  else would be out of of it with  the amount of  meds she's on. Casper is  still  talking. She's getting more afraid as my bedtime nears.  She doesn't want to be terrified by her own mind.  We are holding hands and holding on, and I am praying that tonight there will be some peace, as there was for a time last night, while Casper fears the ugly events of the night before when there was nothing but terror. And all of us in this house who have been watching this battle, as experts try to find comfort and Lewies fight back, are hoping that at some point Casper will have the peace that the patients she's cared for have found. We want her to have the end she requested: peaceful,  painless, and loved. Now we have to convince the Lewies to allow it.

Grief in the waiting

What you see here is the last love note Casper will ever write to me. It's Casper's part of the grief we are sharing as her life slowly fades. I can barely make out a word- but I can see and "us" and an "always."

Casper worked on that last Saturday night, as she was trying to make sense of what her brain was doing to her. Despite heavy doses of medications delivered via a sub q pump, her Lewies were battling back to remain in control of her mind and her thoughts. Casper was having none of that. She needed to make sure she was taking care of her family, and that all was well and they would be okay. She needed to make sure I would be okay in particular, and that I would know how much she loved me. Casper's grief in facing her own death is painful for her, and for all of us. It's a pain that tears at your chest and takes your breath away. She's experiencing it as physical pain at times, and at others as confusion and fear. Recently, as the meds have allowed her to relax, it's been more a realization to some degree that she is fading and that she needs to tell all of us, and especially me, how much she loves us and that her love is forever- "On this side or the other side. I will always, always, always love you."

For Casper, this incredibly hard process is bundled in tangled brain paths, old memories, noises she hears in our room, the words we tell her. She tries to make sense of it. Sometimes she's totally clear- and still her need is to connect and to make sure our love will never end. Not now- and not later. The Casper who could not make herself smile a few months ago no matter how hard she tried is once again smiling when she sees me, taking my hands in hers and kissing them, wrapping her arms around me- from her hospital bed. Last night nothing would calm her. I'd spent the night before in the bed with her, but two of us in one hospital bed is not a good fit. So last night her nurse figured out how to rearrange the bedroom and the hospital bed is now next to our bed. My bed. And we spent last night cuddling on two beds, wrapped around each other. Casper's fears disappeared. My heart tore into a million pieces.

Because it's not just Casper who is already grieving. Last night came the ugly and very real memory of having to learn to sleep alone and missing having my love next to me. It's palpable this feeling of grief and pain. It's worse than losing Linda. She worked nights. It was unusual for us to actually share a bed and sleep- even on nights off she was up all night, sitting up. I learned how to sleep with lights on, and Linda watched TV with headphones held on by a baseball cap. But Casper- she was home every night. We haven't ever been apart in our time together. I was held as I went to sleep every night, snuggled against her after she double checked that the kids were all in and the house was locked tight.  Last night was the first night we were not in the middle of drama and I slept in our bed. And I realized that this will be my world.

I went grocery shopping and items leaped out at me that Casper would want me to bring her- the Ghiradelli chocolates out for Christmas. New ice cream flavors. Soft chewy brownies. Yams to be made with pecans and brown sugar and real butter and marshmallows. Good coffee. A new soft shirt. I won't be needing those things now. I won't be cooking for her anymore. She hasn't eaten in nearly three weeks.

The car needs to be washed- Casper won't be fussing at me. I did bring home a Christmas tree and add some lights and sparkle. My Casper loves Christmas, and she smiled when she saw it. I was afraid to look too closely to see if she knew that we weren't that close to the holidays but I wanted her to have a tree. I cried all the way home tonight realizing her magic would not make our yard look like elves had visited and that I won't be sitting with her watching the kids open their gifts next month. I signed up for the company holiday party. Just last month Casper agreed to go in her wedding tuxedo we just purchased. It's an incredibly lonely feeling- one that wrenches my heart for her and for me. I needed a new pair of shoes- and as I was putting them on I realized Casper will never see them or recognize them. I came up the stairs and realized she would never again walk out of our door- or in to wrap me in her arms after work. She won't call me anymore when the radio plays one of our songs and tell me to change the channel so we can listen together.

Grief is such a long and complicated thing. It's a creature that flexes and bends and swoops in when you are not looking. It can make driving a car a hazardous activity, and walking into our closet hurt as I see her clothes and remember the feel of her favorite red shirt as we cuddled, the blue Western one as we sat at a concert, the Hawaiian one she bought for our Hawaiian wedding ceremony. How am I supposed to get my pajamas on (and in a hurry since we have nurses in our room around the clock and no door on our closet?) when I cry as I walk in?

And tonight I will feel my heart tearing into little pieces as we try to snuggle, as I watch her color fade more, as we hold on and tighter. Casper just told me she's lonely. She wants to know we are still "us"- and always will be. Afterward that same grief will become a part of the remembering, and I will know only after being loved so much would I miss so much.

DOD- The day the world changes

I know when you read that title you did a double take. At least you did if you are in the medical community or watch crime shows. I borrowed this idea from a friend who has had multiple losses in her own life, and who caught me up just the same. It makes an important point.

DOD: it's not the Date of Death that truly rocks your world when someone you love is terminally ill. It's the other DOD that moves you off your axis- the Date of Diagnosis. That never to be forgotten moment or moments when you realize your world is coming to an end as you know it, imagined it, planned for, dreamed of- all of that changes. Hugely.

Yes, I know the day your beloved dies is huge. Truly, I do. But you know what? If you have been lucky enough to face an illness together you have had time to be prepared for what's coming. (Did I just say lucky enough to have an illness? Funny how your perspective changes over time.) But the date of diagnosis? Who can be prepared enough for the unknown, and for how it is presented?

When Linda was first diagnosed with breast cancer years ago, she went in for a routine mammogram. She was fit, took her vitamins, exercised like a fiend (and got irritated with me for not doing so) watched her weight and diet. What did we have to be worried about? An hour after her appointment she called me from a pay phone on the side of the road (remember those?)

"They called in an ultrasound tech. Then a specialist. I have a tumor. I'm in Winter Haven. I don't know where I am. Please come home and meet me." Truly- when your world is rocked you do lose your bearings. We raced through meetings with a surgeon (who acted just like a surgeon- he was God and he knew it), surgery, recovery. All the while I was consulting unofficially with our hospice oncologist at my office. He minced no words with me- "Get into chemo. Get things in order. Take a nice vacation. She's going to be on hospice."

Then we met with the treating oncologist. By that time we knew the tumor's forces that were lurking in Linda, despite a full mastectomy. Of the 18 items they did pathology for, 14 were deemed "grave" in their outcome. Think about it. They use that word for a reason. So there we were with the oncologist. Dr. Fraile looked at both of us. We were in a tiny little consulting room, paneled in ugly brown faux wood. Linda was on a miniature exam table, and I was standing. I will never forget the rushing sound in my ears and the look on her face when he said "They got the tumor out, but it's already spreading like wildfire. Linda will be dead by Christmas."

I know why he said it that way. He was one of us. Linda was a nurse. I was the social worker he saw all the time. He knew us as being in the circle who understand the reality of ugly. But that feeling- that DOD- it is like nothing else. Because that's when you have to really make the plans. To face what's coming. To know what you have left to do. That's when the carpet is yanked so spectacularly from under you with no warning.

Ten years later Linda was cancer free after a battle she won. But we were back in a hospital, and she couldn't breathe. Pneumonia- again? IV meds, but they weren't helping. We had a pending appointment with a pulmonologist, but were in the hospital the day it was scheduled. A hospitalist walked up to me in the hallway. "Come look at the X-Rays" he said. Sure- I must be able to understand them? He points to Linda's lungs. I was looking for a tumor. Nothing looked ominous to my eyes. He waved his hands over the entire film. "See those clouds? That's not pneumonia. That's fibrosed tissue. She has pulmonary fibrosis. She's going to die. She needs to get out of the hospital today." A familiar rushing filled my head. I was left to go tell Linda what he said. That DOD- once again our world changed. Tremendously. Later we would face a cardiologist who added another DOD of heart failure, common to PF. "You have right sided heart failure. It's untreatable. You are going to die sooner." Then again the pulmonologist, who said "I wish I could do more. You're going to be pushing up daisies soon in the big dirt nap."

It is at those moments that you realize that there won't be grand kids you get to watch together on the front porch (yes, lesbians have the same dreams the rest of you do). That a special trip is no longer possible because you are too sick for the Bucket List you waited to do until later. And then suddenly it was later. It's then that the soon to be survivor realizes that "later" actually means "alone." Trust me- it is not a good feeling. You suddenly begin to resent retirement commercials because they always have a happy healthy couple out skydiving or something. You being to hate the stupid signs in cutesy stores that say stupid things about life not being about the breaths you take but what you do. How stupid is that? Really? Breathing is an essential part of that living thing. I'll admit that particular one rubs me wrong every time because Linda died of PF, and now I've added anything about holding onto memories to my list of plaques I will never invest in.

The DOD for Casper is not what's coming soon- and that one most certainly is- but the day we finally, for once and for all, had a doc tell us that she absolutely had Lewy Body Disease and that there wasn't even research to enroll in. After three years of misdiagnosis, guessing, blaming, outrageous medical bills for private consults and testing, we finally had a DOD. By that time Casper was already fully disabled. Her memory was fading fast. But that day the rushing noise was when I heard her answering the questions for the MMSE (Mini Mental Status Exam). I'd convinced myself that the memory meds she was taking were helping, even a little. I'd hounded the nurses I work with and our doc to tell me what they really thought of them, and some were honest, while others hedged out of kindness to me. That rushing came as Casper could not tell him where she was, how we'd gotten there, the weather, the season, the year. I kept my head down as she searched my face for approval. That time I just couldn't look up. It tore at my heart. It tore hers, too.

On the way home (nearly two hours) she said "I didn't pass, did I?" Yes, you did fine. "I have that disease we were worried about?" Yes, you do. No- WE do. This is our illness. And this is our DOD. And now what limited time we thought we had just got so much smaller. The next trip to Hawaii? It will never happen in this world. I hope it does in the next. The need to renew her driver's license and nursing license? Not so much- except to her it mattered, and in fact this week I renewed them both. (Even social workers are allowed a bit of denial). The plans to move? Gone.  The partnership/friendship/parenting relationship she had with Kerry in particular? Pain beyond belief to even think about that one. Even now. And especially now, as Casper has used her time now to say special goodbyes to each of the kids and tell them how proud she is of them and that she got to be mom for even a little while.

That DOD gets you ready for the other DOD. It's the one that rocks you. The final one is what seals it and throws you into the final grief process. But grief does not start with death. It begins with knowing death is coming, and about to steal your plans and your life as you know it. It certainly has in my world.

The Waiting

 

"Jill- I need you up here! Casper wants you!"

 

I didn't sleep much last night. Casper had a really bad day yesterday. There was no way to combat her irrational fears and terror, and she threw herself off the bed when I stepped out for a bathroom break. Sleeping to flying in 2.7 seconds. Who does that after not eating for nearly two weeks? Casper, that's who. We had bout after bout of agitation, scary feelings, wanting to die, apologizing and tears, back to afraid, and on and on and on.

 

The night before was so hard I finally called the on call nurse as a friend. Help me accept that this is not what anyone expected. This is not fair to Casper. I made a promise- a calm and peaceful death, no pain, no fear. Marcia told me what I needed most to hear- this is not normal. This is not what anyone expected. But damn it, it's Casper. She is, of course, going to do this her way. The problem is her thoughts are so random and disjointed that she can't tell what she wants. She knows she's afraid, she knows her family. Sometimes, actually, not all the time.

Casper's nurse and I talked She and our doctor talked. A plan was made, but still more talking was needed. I saw our minister, although I was already at peace with the plans. Then another wild night, and it was time to make things happen. But somewhere in that time, something happened.

 

Casper woke me today. "Jill, I need to go." Not to the car, as it has been all week. "It's time for me to go. The angels came. They are waiting for me." We've been talking about her death all week. She and I had said what needed saying. But this- this was different. The nurse at the foot of the bed confirmed it. Casper was beginning to have mottling- the different coloring resulting from loss of circulation as the body starts to slowly shut down. Her feet were cold. She didn't notice it. Casper wanted the kids and family nearby- she needed to say goodbye. She had angels waiting "on the other side" and she needed to be ready when they came back. I made the calls. I found myself without a voice. "Chloe, Mommy needs you home..." "Charity, it's time to come home..." I couldn't say more. They got in their cars. I really don't want to know how they got here so fast. "Katrina, I think you shouldn't be in Orange County today." I really don't want to know how fast the car was going to get home from the 55/91 interchange in rush hour in 27 minutes.

Casper told me last night she was going to die. Today for two blessed hours we had her back. Lucid, talkative, loving. She remembered things from the recent past. She told the kids she was proud of them. Then she faded. The fear returned. The agitation. But we'd had our moment.

 

And so we wait. We talk, We calm her as much as we can. Sometime soon a sub Q pump will arrive, and Casper will be sedated to prevent her from getting so agitated that she hurts herself or swings at me. She will not face the fears that her brain is manufacturing in it's fractured connections. She will sleep. And sometime after that, she will slip away to those angers, and into eternity. I need to believe it really will be the place that surpasses all understanding. I need to believe Linda and her parents and her aunt and my dad will be waiting. And I need to be there to hold her as she reaches them.

Until then we wait. Kids in and out. Staff in and out. Friends in and out. Friends who hold our hands, who can sit with Casper and make it okay. We are surrounded this day. Jokes are made about the poor dog, who is willingly wearing all the crazy outfits I have gotten her; about what happens when I arrive on the other side and I have two protective wives waiting for me. Jokes about hospice. It's the reality that there is nothing we can do about this situation so we might as well normalize it. Casper can't feel alone- no matter where she looks someone is there with her. And sooner or later, it will be that time. The "transition." Where my Casper becomes their Casper, and I will have to simply know that she will be waiting for me, with Linda, on that other side. Right now I am so very glad they were friends. It could get ugly when i get there... Can you imagine?

Things I don't want to forget

As Casper is fading from this life I find myself sitting next to her and remembering a thousand little things I don't want to ever forget. I pulled out the things for the memorial service DVD yesterday and more came to mind. I printed pictures for her sister and  memories  flooded back. I awakened somehow thinking that she was waking me with my perfect cup of coffee today- only to find I was on the couch with two cats and a stiff neck, and bed head from the scary side. I would have made Phyllis Diller proud!  This one is personal, so bear with me.

 

The first time I met Casper she scared me. I had a habit of meeting new hospice staff at the door and showing them pictures of Linda so they would know who Linda was and had been, not see her as a diagnosis in a bed. Once I was sure about them, I usually wasn't there when they arrived, because Linda was cognizant and could discuss her needs better than I could. She lied about how well she was doing and using her walker, but they knew that. They were, after all, all nurses.

 

So there I was at the door, and a big black SUV rolls up. Casper got out- all dressed in black. Shirt (ironed long sleeves with crisp edges), black pants, black belt, black tennis shoes. She carefully put on a crisp white lab coat, from the back of the SUV that had actual drawers arranged across the back filled with supplies. As we shook hands she said "It's the Man in Black's birthday today." Huh? Who? "I'm Casper. I'm Linda's nurse today. You don't know the Man in Black? Johnny Cash?" She had the Casper look- stern with a twist of smile- and puzzlement. I backed up and let her in feeling stupid and a little disoriented. Our usual nurse was all fluff and rhinestones and kind of like Barbie with a nurse backbone. Holistic and wholesome. That would not be Casper. 

When we got upstairs she was all business- but she had a special connection to Linda immediately. Linda lied about using her walker, and Casper noted she couldn't have used it if it was across the room. There was a moment about how Linda might not like it but she needed it. There were notes made of recent bruises- proof of naughtiness. And then there was that "tell it like it is and deal with it" that both of them had. Linda relaxed. Finally. By the time that visit ended Casper was perched on the bed next to her, they were holding hands, and both were smiling. I was told by both of them that they could manage it and I could go back to work. I was dismissed. I was relieved.

 

What I didn't know was that Casper was just as scared of me as I was of her. Last week the truth finally came out- under the influence of morphine and other drugs, Casper told me she thought I was scary but cute, and she thought Linda was a very lucky woman to have had all those years with me. While other staff who came and went told Linda to eat healthy foods, Casper got her M&M's and ice cream. She helped her talk through her fears. She came on lunch hours (Casper never took lunch hours) and hung out with her as a friend. She helped Linda and Linda talked to her about love and commitment and finding a relationship that was healthy and good and loving for Casper. They compared notes on Southern dads and nursing. Linda told her she always trusted nurses who started as LVN's because they knew what real nursing was and were not afraid to get their hands dirty. She offered Casper her nursing books as she worked on her RN. It gave Linda a sense of purpose. I never want to forget the help she brought that took Linda to another level of peace about her death. The look of calm on her face as Linda was dying- that kept me centered and able to focus on the kids and Linda. The watchfulness she especially had for Kerry that day. The tears in her eyes when it was over. There was a continuous care nurse there that day, but Casper stayed the whole time, just as Linda asked her to. I was surprised and touched that she showed up for her memorial service and interment- and that the rest of the family remembered her and spotted her- she'd made an impact on them as well.

 

There were text messages afterward- just checking up on me. When we met for dinner Casper was careful- this was just a possible maybe kind of sort of friendship as a hospice follow-up. Except she kept apologizing for being in work clothes. Then when we sat down for dinner, hospice staff popped up. And joined us. That was the very first time I ever say the full Casper scowl or heard the growl. Fortunately, it wasn't for me. Unfortunately, it didn't run anyone off.

 

Our romance was careful, cautious, secret. I was, after all, supposed to be a grieving widow. And you know what? I was. I still am, actually. Enjoying having someone holding your hand or holding you tight doesn't mean you miss any less. It means you are not doing it alone. And with Casper it meant she was also missing Linda right along with me. It kept Linda's memory alive and present, in a comforting way. When I laid her headstone, Casper was there, with her arm, respectfully, around me. When I needed to visit and cry, she met me there. But on Memorial Day and Veteran's Day she insisted that the kids go with me and without her so they could honor her memory and service.

 

I had to pass muster with Kathy and Mary and the office "girls." I am not sure they knew they were giving approval, but I was warned that the hospice crew was afraid for Casper. My friends were afraid for me. Nobody but nobody thought this was a good idea. And then there was that look of calm, and reassurance, and a special kind of love in Casper's eyes (baby blue, by the way)and I was okay. We both passed muster. I want to remember that feeling of calm as we relaxed into knowing we were okay and right and that our hands fit together. I want to remember the look on her face when she looked at me- kind of a surprised sparkle in a most romantic way.

 

I don't want to forget a text message during a week when I was trying to do too much for too many too soon after Linda's death. Apparently I am a bit of a control queen and a bit hyper in getting stuff done (who knew?). As I was trying to explain all that needed doing, what the kids needed that day and night, etc, etc, etc, Casper sent me a text- "How long has it been since you had strong arms around you, holding you, letting you be taken care of?" That was the same day I was heading for a massage and had been thinking I was probably not going to be touched much anymore- I was going to have to pay someone to rub my shoulders. That is indeed a lousy feeling.

 

We met in secret so as not to upset our watchers. We changed names on cell phones so nosy kids would not realize who was calling or texting. We snuck away from work to meet behind Starbucks every morning. We entertained the creepy tow truck driver who started showing up at the same time every day and always parked right next to our cars. I'll bet not many people noticed that the top of our cupcake tower at our (first) wedding had two Starbucks cupcakes... Even now, in the worst of the dementia and fear and confusion I can say "Starbucks kiss" and there is some flicker of recognition. Sometimes there is more than that! And always Casper was careful. She wanted to never disrespect Linda's memory or the kids' feelings. When I ended up in the hospital she would not stay overnight when I got home even when friends asked her to - she didn't want the kids to see her in our bedroom. She almost ran when my mom arrived to check on me (along with the rest of the crowd) and saw her standing next to the bed.

 

And when we finally became an official "us" she continued to treat me like a princess. After years of caregiving, I was always awakened by hot coffee with exactly the right cream and sweetener. My clothes were ironed and hanging up waiting for me. I learned what it meant to be a butch in North Carolina- even though we are in California. My door was always opened for me. I was taken care of. I was to be protected. If I went out running before dawn I was either followed or called. If I wasn't home on time I was called for safety. There were rules- but they were good ones. I miss them now. Tremendously. I walk out of my office at night in the dark and Casper isn't calling to walk me out by phone. It's lonely already. I see someone holding a loved one's hand. It hurts. I need to start running again for my own health- but Casper won't be worrying about me. Right now she is delusional, and getting closer to death. Still loving when she knows me, and still with those baby blues- but not for long.

 

I never want to forget the look on her face when she first saw the whales in Hawaii. She loved those magnificent creatures, and could sit for hours watching them. She even loved being in the ocean, watching them share the water with us. Did I mention Casper never learned to swim and is afraid of being in water? I don't want to lose my memory of her smile when she had a Hawaiian shave ice in her hand. Always the biggest one. Always three flavors with ice cream and cream. Frequently twice a day. I'll truly never forget the look on her face when she arrived at our house when it was still "my" house, and the kids were gone. It was probably 105 degrees and there was nobody home. I'd dropped my clothes and dived in. Casper came through the gate later as I was swimming laps and stared. Puzzled. "Did you forget your drawers?" 

 

I never want to forget how my Casper became a parent to three girls, who sometimes did not want another parent, but who would call her late at night while I was still at work with some need. Despite not wanting to drive at night Casper would drive from Redlands to Riverside. I would come home and find her car out front- and none of the four of them had called me! Of course, when I walked her out all of them followed and we had three teenage chaperones to make sure we were "just friends." I'll never forget her tremendous support when we had serious issues with all three girls and her ability to calm them down- not to mention me.

 

Most importantly I never want to forget the feeling of those very strong, very butch, very loving arms around me, protecting me, making my world happy again for a while. I want to hold on to the sound of her voice telling me she loved me, and that she was always going to be mine. I want to hold her smile in my heart, not these last months of confusion and sadness and loss- although they are important too. And I will always hold onto the determination she had to make me her princess one last time at our wedding- and how hard she had to work to get there. Her smile that day will be in my heart as we face what's coming.