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.

The final stages of life- what to expect

 

Tonight we held a prayer circle here at home. Our minister, Jane Quandt, is exceptional with helping families remember happy times and good things while preparing to say goodbye. The kids were piled onto our bed, Kerry was perched as close as she could be to Casper, and the room was filled with family and close friends. Everyone who wanted to had the chance to say something they valued about Casper, and for a brief window tonight she was able to really truly focus and hear what was said. She did think the room was foggy, but she heard the words and responded to them.

 

I was a proud mom to hear the younger kids say they had not been as okay with Mom and Casper being together at first- and then telling her they were glad we worked it out, and thanking her for her role in their lives. (I also loved one of my BFF's asking if aliens had stolen the children and replaced them with a body double). I was a grateful friend to hear so many people saying they were afraid at first of us being a couple and then glad we were able to have so much happiness, even for such a short time. It hurt to hear the pain in all four of our kids' voices as they face another loss. Casper heard it, took it in, and said she was glad we'd had the time to be a family, a large and loving family. She was at peace with the prayer said and made sure hands were all held. Then she was done- time for all of us to let her have some peace and quiet. Fuzzy looked like she agreed.

 

I wish all families had the opportunity for moments like that. I am beyond grateful that after a bad many days of delusions, hallucinations, fighting, hitting, cussing, and abject fear that Casper was able to be there with us. It was for both of us and all of us. I needed to know that Casper heard she's had an impact on lots of people who love her enough to be gathered around her. I needed the kids to have support if they wanted to say their peace- or if they didn't. I wanted my mom and Casper's brother and sister to be able to have support and to be able to say something if they needed to- and they did. And I needed to know my love would leave this world knowing how very loved she is and was.

 

In the midst of this have been the incessant questions from those who do not do death and dying for a living. Who don't work in hospice because it's not a job- it is a calling. Hospice staff believe that terminally ill patients deserve to die in the living situation of their choice in dignity and as comfortably as possible. They should be able to do the things they want to for as long as they can. They should have care at home, not wait in a doctor's office. They should have education and support if they want it.

 

Part of that education is helping families understand what they are seeing and experiencing. This week I've had some reminders that most folk don't know what to expect and don't know what "normal" is at the end of life. As we are living it with Casper, slowly and in waves as the Lewies take over her brain, there are similarities in most illnesses at the end, regardless of diagnosis. Lewies add a special pinch of delusions and hallucinations, agitation and fear. The rest of the symptoms are so much the same I feel as if I am reliving Linda's last week right now, but in slower motion. And I'm feeling awful for our kids who are seeing this a second time at ages when they should not have seen this even a first time.

 

When Lewy Bodies start to bring life to a close they go on the rampage as far as I am concerned. Their are clinical discussions and descriptions, but they mean the same thing: The Lewy Bodies have overtaken the brain of their victim and have the ability to change their thoughts, respirations, motor functions, heart rate, even temperature. The fear Casper is experiencing over and over is hideous to watch. The fact that she can remember it and realize she is "Losing my mind- I'm going crazy!" is worse. Our hospice team is working night and day on that- literally. She can't remember me, and she gets overwrought when she is disoriented. Just a few minutes ago she punched at me again as she was trying to understand where she was. She thought I was in a bad neighborhood and was horrified that I would even consider being there. She wanted a beer- which she hates- then when I brought one she looked scandalized and told me she does NOT drink. As the night stretches on her behavior is getting worse. That is the extra chaos induced by Lewy Bodies. For all people facing end of life there are huge similarities:

• Appetite changes- patients are truly not hungry. Their bodies no longer need nutrition and systems are shutting down, so food can be overwhelming. Loved ones are not starving them. They don't require food any longer.
• Fever: as a body shuts down and stops filtering, fever happens. It's normal, and it needs cooling measures, not huge interventions.
• Breathing changes: the brain stops sending messages to breathe regularly, and even to swallow, resulting in a noisy breath that sounds awful but isn't. It's a little fluid on the vocal chords and in the windpipe. Casper has been breathing as little as three times a minute for more than a week now at times. She's never been aware of it.
• Loss of sense of thirst: when your body is not using fluids and your kidneys have stopped processing them, thirst is no longer necessary. IV fluids will flood your body with unnecessary fluids that will fill your cells and your lungs, and make you miserable. Casper has had very little to drink since last week. I am not forcing her to die of thirst or starving her- her body no longer wants those things. If she asks for them they are provided. Immediately. But when we do offer, the answer is no.
• Loss of energy and sleeping more: when your body is tired and shutting down, and you are not eating, you sleep. Lots. Most of the day. That is normal. In our house sleep has been a precious commodity because the Lewies have been so busy disrupting Casper's brain that her own internal thoughts wake her, as does noise, her own snoring, even slight movement of air past her. That's actually abnormal, and a special feature of Lewy Bodies.

In our family we are living a terrible loss on a daily basis. Our nurse tonight is sitting and holding Casper's hand, and Casper thinks it's me. As hard as this is, we have the support of a great hospice team taking care of all of us. Watching out for the family and their responses. Keeping an eye on me (yes, I am coping. Maybe in my own way, but I am. And my people have me surrounded near and far. That makes a huge difference). When this comes to a close, as it is trying to do, but slowly, and in Casper's time and in her own way, she will leave here surrounded by all of us. Her angels are waiting. She's seeing them coming to visit. I will send her to them, knowing there isn't a choice and that we have done all we can to make it as okay as we can.

 

 

When Lewies Go Crazy

As I was showering this morning memories of the week Linda died were vivid. I'll never forget taking a shower and wondering if that was the last time I would shower as a married woman- would the next one be as a widow? (It wasn't- the next one was). Then there was the climb up the stairs after Linda died in our living room. The sudden realization that I was never going to see her in our room again. That I was going to sleep alone in our bed. That I wasn't going to hear her call me "Jillie" as I walked in. Small realizations as you come to terms with such an immense loss.

 

And so this week I am having those thoughts once again. This time I will not be walking back into our room from downstairs- Casper is in a hospital bed in our room. I'm remembering things I wished hadn't happened the last time, and taking steps to make sure they don't this time. This time nobody is going to change the sheets on our bed. I'll do that when I am ready. This time I am double checking all the ideas for a service so I do not upset anyone this time around. I have backup plans to take care of our oldest daughter, who is hurting tremendously with Casper's sudden and phenomenal decline.

 

One month ago next week Casper was able to walk down the aisle at our wedding. Her face lit up as I walked toward her. She was weak but she was determined, and her smile was unbelievable. Today, and all this week, she has been essentially bedbound. She would very much like to be up, but the last time she fell, and she no longer has the ability to stand or pivot. When I helped with her bedbath on Monday she could not stand long enough to be washed bedside, even with my arms around her. The last night in our shared bed was Sunday, when she asked her brother to get her there because she knew she would not be able to move much longer. She was completely accurate. That night she and I talked, and in a lucid moment she told me she didn't think she had much longer. She could tell her body was changing.

 

How does this happen? Why now? The answer really is- why not? Lewy Bodies take over the brain, and go after all the major systems. Respirations; temperature regulation; bowel and bladder; appetite; taste; GI; movement; vision; blood pressure. They leave nothing intact in their path. Their path is different in every person taken over by Lewies. Casper is no longer breathing normally. Her temp is off the wall- up, down, in zones on her body. She's not hungry. She's rarely willing to drink. She's been so unconscious she didn't feel a catheter going in or recognize it was there for days. Lewies wreak havoc everywhere they go. They create delusions and hallucinations; they make your memory fail. The picture on this blog has some of our wedding pictures on our wall- and they have names attached. Casper told me she can't recognize anyone- even herself.

 

This week it has been our turn to experience a full scale Lewy attack. I am watching my wife fade as she battles for her sanity. Yesterday she was trying to remember the names of her best friends and begging them to join her with the nurse in a prayer to make her remember them and be able to breathe. She was frantic. Did I mention Casper never, ever prays openly? (And yes, for the skeptics, she does have a strong faith. She is just very private about it. She has never believed in publicly announcing her beliefs and mistrusts those who do.) Friday night when I returned to our room after a break she held her fingers to her lips and frantically motioned for me to be quiet. She mouthed the word "COPS!" and pointed to our office opening. Then she tried to secretly motion that there was a problem behind her. She finally whispered in my ear as I leaned over the hospital bed rail "There are bad guys behind me. They came in through the secret door. The cops want to get them. I need to keep you safe. We could get caught in the gunfire." The wall behind her is our second floor bedroom wall. There is no door. Later her catheter became attached to the TV and was making it select channels against her will, and her oxygen line was producing urine. Who wants to make those ideas go away with someone who is utterly convinced, afraid, and knows it to be true and not true at the same time?

 

In the midst of the craziness Thursday I called our nurse. She's no longer Casper's nurse, because I think I need her more now than Casper does. As I was trying to explain what was occurring I finally handed Casper the phone. She'd been tugging at it trying to understand who was there. Suddenly-"You know I love Jill, right? I'm afraid she's going to stop loving me. I'm so afraid I am too much. I'm afraid she's going to walk away. That I'm too much for her." Take one Jill heart and tear it in half. There are no words. The Lewy Body literature says over and over that caregivers of patients with this horrendous disease are frequently afraid of what they are facing. I think if you ask one of us you will find we are afraid of what our loved ones are experiencing. It's awful to watch. To hear. To feel as Casper holds my hand so tight that it hurts.

 

And then there is the sudden change in personality. I'm told Casper used to be quite the fighter back in the day. I've never seen that. For her it was always in defense of others, for good cause, but she was strong enough to throw a grown man to the floor. Now, despite the ravages of Lewies, she's back there now at times. My gentle Casper, who held doors open for me and fought battles for me, is now hitting me and being aggressive. Then she's loving and cuddly. She smiles- then can swing when frustrated or in pain. Our doctor described the Lewies as "reorganizing her brain." Apparently the reorganization includes aggression, no longer wanting her beloved Fuzzy near her, and using language previously reserved for the worst of times. I know it's not my Casper- but I miss my Casper desperately.

 

And then there are the moments- increasingly infrequent moments now- when she is my Casper once again. When what she wants is to share our bed again, to be held, to know we are still "us." Fingers crossed that as she fades, as she is surely doing, we will have a few more of those, that the Lewies will allow us to hold hands safely and let her recognize we are as they take her from this world to the next. 

 

 

 

For more info on Lewy Body illness follow this link:
http://dana.org/news/cerebrum/detail.aspx?id=44538

The sounds of hospice

 

Some of the clearest memories of my childhood don't involve visual scenes at all. They are the sounds, the feelings, the movement around me that created the feeling of family and safety.

 

The sound of our old Ford F150 being started at 2am as we three girls slept in our bunks in our camper, snug in our sleeping bags and secure in the knowledge that our parents were up front, the dog was in the crawl space, and we were off on vacation for another month or six weeks. The sounds of the truck, the sway of the camper on the road as we climbed the Cajon Pass, the feel of my sleeping bag- those sensations will never leave my memory.

 

The sound of my cat Piggy purring in my ear at bedtime and the feel of his paws wrapped around me- that was bedtime. The sound of dad's stereo blasting military marches and the 1812 Overture with full cannon to wake us for church on Sunday morning, or the sound of "Carl Princey and the Gas Company's Two Hour Evening Concert of the World's Finest Music" made bedtime on Sunday complete. I have no memory of my darkened bedroom (ok- I do have memories of shutting my eyes in determination to defeat the cannons blasting through my room. I can now sleep through the Fourth of July!)- but I do have those audio files buried deep. As an adult I don't remember Post Op after surgery- I remember the sounds of monitors and the voices of nurses (fortunately most of the time I knew the nurses as friends and they were kind and gentle voices).

 

And now after years as a hospice social worker, widow, and now wife of a hospice patient once again, I have so many associations of the sounds that come with terminal illness and hospice. Sounds that I was able to externalize as belonging to other families as I provided for their needs as a social worker; sounds that have now come back to our house and are once again personal.

 

I was in four other homes today. All had the sounds that make hospice- baby monitors squawking as they blasted the sounds of the patient's room as the family met in another. People coming and going and trying to ask too many questions all tumbling over one another (yes, I thought about a whistle. No, I didn't act on it). Food being prepared as if anyone had an appetite, because food always makes things better. Except when it doesn't. Food does provide an outlet, however, a focus, a chance to gather together away from a bedside for a bit. The sound of a patient being bathed and not necessarily wanting to be bathed, but needing it. The sound of gentle voices cajoling and coaching into a decision that allowed the bath to happen. The sound of silence as a terminally ill youngster was allowed to finally nap in the midst of too many people trying to do too much. He didn't need to see anyone- he felt their hands, their arms holding him; he fell asleep holding his brother's hand. The inevitable sound, in every home, of the oxygen concentrator. It hums; it breathes; it makes oxygen from room air and delivers it through a nasal cannula or mask to make even the sickest patient just a little more comfortable. As we cope with pain and anxiety all of us naturally pull up our shoulders and breathe just a little bit harder. Meds and oxygen will allow almost anyone to relax enough to sleep.

Then after a longish day I was able to cut a little bit short (yes, I use bribery in therapy to help teens make good choices and learn the lessons that come from rewards) (thank you Sherry Shockey-Pope for finding us an office close to a frozen yogurt shop!), I came home to the same sounds at our house. And this time it was personal. Kerry couldn't help carry dinner in because she was sitting bedside watch for Casper, who was hugely confused and disoriented and was sleeping with her legs off the bed with a look of weird amusement on her face. Kind of like "I have no idea why I am in this weird and uncomfortable position but there isn't a thing I can do about it so I might as well laugh while you try to figure out what to do with me and about this." Casper had already fallen today and hit her head. No injuries yet- waiting for the bruises to show up tomorrow when she won't remember it. I fed her dinner, especially after I found her trying to eat the TV remote rather than her dinner. She wasn't complaining that it had no taste, which proves how little she has left in terms of taste buds. She thought it was normal for her dinner to taste and feel like a TV remote!

And so it was that after dinner she finally fell asleep. She's still asleep hours later as I sit and write this blog. That's when the sounds of hospice arrived- and made my skin just crawl. Kerry and I got Casper back in the hospital bed tonight, and she immediately thought we were back in a hotel. She looked for her grandmother. I reassured her. When she was finally asleep, the guttural sounds started. With PD and LBD the brain forgets to swallow. Truly. So as you sleep the fluid builds up on your vocal chords and air creates a tremendous sound as you breathe. Added to that was the respiratory infection. As I dozed off (no sleep last night) the sound built. I awakened to memories of Linda's last week. Casper got atropine (prescribed to dry up secretions). No results. Then repositioned again. No results. Then I attached a mask to her face with a breathing treatment and she slept through it, but the treatment got into her. With no result. I tired to adjust my thought process. I removed myself from the memories of Linda's last week. And still it rang in...

I did what I advise families to do- I evacuated. Not far. I can still hear her, the oxygen is running, and I will be bedside again soon. But the sounds of hospice are here at home tonight. They are too soon. They are too close. They are not welcome. And there is not a damn thing we can do about them except accept them and take care of Casper. (And have a glass of good Cabernet). Back to bedside now- hand holding is required. For both of us.

Holding on as it gets worse

I had time out today. First church, surrounded by church family on All Saints Day, and then lunch with my girlfriends from childhood, all of us deciding when to get our AARP cards and asking to be carded for our mimosas over Indian food. I don't know what people do who don't have best friends and girlfriends and best girlfriends and church family. My life would be unimaginable without them. People who have watched you and your kids grow up, attend your (multiple) weddings, who remember the details you forget and who you get to remind of old and sometimes naughty times. Who know your family and love you anyway.

 

When I first started spending time with Casper it was my girlfriends I told first. Their  positive and supportive reaction made it possible to brave the reactions of others who were not so sure I should have been dating quite so soon. If the girls you loosened the tent stakes of your leader with with on Camp Fire Girl camping trips were open to my growing love for Casper, and her strong arms supporting me as I grieved Linda's death, then I could handle the rest. The same girlfriends helped me evacuate the camping trip we do early the last time Linda went, when her heart began to fail and we had to suddenly pull out at something like 6am on a Sunday morning. What do people do without friends they used to count to ten with to use the swings who now help you pack up your wife to get her out of harm's way, and then help you celebrate her life, and then your remarriage?

 

And so today was time out. Indian food (gluten free for our Wendy), gelato (divine), walking around Eve's chosen city of Long Beach, and time to catch up. The whole time Jay and I were texting. Casper was sleeping (still); she took some fluids and her meds (yay!). Things were okay. I headed home when I just knew I was away too long and was too far away for my comfort. I have a way of attracting stupid drivers and big rig wrecks when I am on the road. "Mayhem" is my weekday middle name. I was sure things were looking up when I made it from Long Beach to Riverside in a record 47 minutes. Especially when it's 56 miles door to door. Casper says I have a lead foot. I think Titanium is probably more correct.

 

And then I was in line at the grocery store. It's dog food cooking night for our aged Lab/Cocker, and I needed supplies. Casper was on Jay's phone. She couldn't figure hers out. She wanted me home. She sounded awful. I would say "awfuler" but my GF Wendy would do a smack down. I was home in more record time. And my heart broke.

 

It's been a bad week at home. The worst since Casper first got sick. She spiked a high temp. She developed both an upper respiratory and a kidney infection. She slept 95% of the time and battled Jay and me the rest of it. Kidney infections create chemical imbalances that cause havoc in your brain, and with dementia already on board there was more. Casper did not hear a hospital bed arriving. She didn't notice me moving furniture out of our room. She was unaware she was even in the hospital bed for a long time, and thought we were at a hotel. One night she asked me to order cereal from room service. When I brought it in she thought I was the waiter. She lost the ability to feed her herself and for a time to drink. We resorted to syringes to get fluids into her mouth (no, there was no needle involved!) Every noise caused more confusion as she tried to sort it all out. Nurse friends who Casper loves came to spend Friday with her and were taken aback by her condition. She knew them, and actually enjoyed her time- but even two hours with them wore her out, and she slept through much of it.

 

And so I arrived home today. Casper was back in our bed. Jay helped her get there at her request. She told him she knew she would not be able to move much longer, and that she would have to be in the hospital bed. There simply isn't going to be an option soon. The nurse in her knows that. But she wanted a night or two back in our bed. With me. I curled up with her. She didn't have the energy to put her arms around me, and her arm under me had so much neuropathy that she had to ask me, gently, to be careful. She hurts everywhere now. All the time. I lifted her other arm up, and placed it over us, and we snuggled for a bit. Casper's head rested where it used to. Our hands closed around each other. And yet she was so short of breath even a kiss was an effort.  There were tears. Because this was my Casper. The same Casper who, early into our "getting to know each other" phase, sent me a text that said "How long has it been since you had strong arms that wrapped you up and held you, and made you feel safe?" The Casper who was so butch I never held a door open; I was met at my car door when I arrived home or at work; who woke me with coffee made exactly right and my clothes pressed and ready for the day. The Casper who cooked for us and made sure sheets were changed and who truly made me feel enveloped in caring. After years of illness and coping and working too much as Linda got sicker and sicker, Casper made it all okay. Until she couldn't anymore herself.

 

And so today our arms are carefully holding each other. Our hands can still hold tight, mine over hers now. She no longer has strength in her hands to even hold a cup. And as we face "a reality we did not agree to" (I think that quote is brilliant in it's simplicity and clarity, credit to Jenni Papp, RN), we will hold onto each other. There is more talking to do in good moments. There is grieving to do, together and alone and with our village. It was All Saints Day today. I shed tears for Linda, and for Casper. I will again next year.