"It is Finished"

Linda was diagnosed with pulmonary fibrosis three years before her death. As with her breast cancer diagnosis, she fought it hard and she gave it all she had. Much of the time she didn't know how debilitated she was becoming. In 2008, on the Tuesday of the week we were finally going to be able to be legally married, her pulmonologist told us she was terminally ill. We knew it beforehand. You Google PF, and what you get is "Life expectancy of five years or less. 60% die in the first three months." There was no doubt from the beginning what we were facing. But then it actually starts to gallop, and you are off to the worst race of your life.

The day we were married, September 6, 2008, it was hotter than blue blazes. Our church is charming, beautiful, historic- and has absolutely no air conditioning. It was close to 107 degrees that day. All week we had watched the weather forecasts, and all week they revised it upward. Our beautiful church baked all day in the merciless sun, and at 5PM it was an oven. But if you look at our pictures, you would never know it. Linda laughing with her brothers.The kids with their bouquets. Dancing. "YMCA" with the crowd. Our hands together exchanging rings, and saying vows we knew meant more than anything, ever. And an agreement with our minister to leave out "Till death do us part." And not a word to anyone that we had been told anything final that week.

I made sure Linda stayed in the cool of the Mission Inn as long as possible as I got other stuff done. We set up her oxygen in the kitchen. She had never ever had to use it before. I had it there because I was paranoid at that point. Who knew the O2 tank needed a special key and a connector or it will do no good? Not the social worker side of the family. Not at that point. It was a never to be forgotten lesson for me.

Half way through the evening, after the magic of vows, the beauty of the music, the love of friends, Linda was doing what she loved best- dancing. And then suddenly she could not breathe. I could see the panic on her face. I could also see her telling me not to tell anyone else. Don't ruin the night- just fix it! We got her into the kitchen, reached for the tank- and it would not turn on. The magic key was not on it. A church member who read the body language and followed us in ran to find a wrench. The tank opened. We had a tube, nasal cannula, tank- no connector. Linda was pasty white. She lost her balance. She sat. The kids came in. She managed to say she was fine. She wasn't. Kerry finally figured it out, and came in to say she was ready for bed. We had a sleepover planned for the four of us at the Mission Inn. In my family honeymoons are always shared. My parents took my aunt and grandparents. We took our kids. Kerry and Chloe guided Linda across the street with her cane for support, smiling all the way. The AC was cranked up, and we got the oxygen concentrator turned on- and it had all the pieces! What do I remember about our wedding? My beautiful Linda and the way she smiled at me. The music. The readings. The vows. Our kids and niece and nephew. Our flower girls. The toasts. The friends. The panic. The firm realization that Linda was going to die, and I could not stop it. And the room service dinner at midnight where we celebrated being a family, and where Linda could revel in her kids.

Eighteen short months later, not five years as we had hoped, Linda's fight was ending. She worked as long as she could. She snuck oxygen at work to keep working. She begged every doctor, every ER, every provider, to keep her here until Chloe graduated from high school. She gave me list after list of things I needed to take care of then and later: school for the kids; adopt Charity; watch out for Munchkin; make sure her family knew she loved them; make sure I was not alone; put the Angels on our headstone (not the ones with wings- the Big A); tell special people how much she loved and appreciated them; keep an eye on our nieces and nephews; send flowers; and on and on and on. She was up and active, and so ornery that even I had a hard time seeing the changes happening before me. Looking back at pictures now I am haunted by how much she was changing, and how, as a nurse, she had to know it. She took a picture in the car on the way from a hearing in court over Charity and looking at it now I can see how puffy she was. Her heart failure is so evident I could kick myself. But I was the wife- I just saw Linda. I took her to Roger's Gardens with my girlfriends, and she couldn't remember she needed her wheelchair, and then that we had to pay for purchases. We went to lunch and she fell asleep in her soup, and could not figure out how to use the bathroom. And she was blissfully unaware of all of it. As far as she was concerned she was still the same active, vibrant Linda she always was. I so wanted to believe that.

And then it just before Holy Week of 2010. Holy Week has always held drama for me. I have spent two Good Fridays in the Service of Darkness after having to hospitalize one of our kids. It's the week folks with mood disorders seem to lose touch with who they are and a good bit of reality. We were supposed to play poker the Friday before Good Friday with Sherry and Tracy and Connie at Connie's house. Two weeks before, when Linda was struggling with yet another lung infection her nurse ordered a hospital bed for the living room. I asked for that location, so she would have the option of using it to see the kids after school and to be a part of the neighborhood. Linda hated it. Purple passion hated it. She pushed the couch up against it to hide it, and refused to even look at it. For two weeks nobody touched that bed. Then that Friday morning, when it was just the two of us at home, she said "I think I'll just go try it out. I'm a little tired."

I should have known. I did hospice for a living. She was short of breath all the time. Her morphine intake was going up. She was at 5 liters of oxygen. I should have known. She never got out of it again. That last time she walked down our stairs, on her own initiative, was the last time we would share a bedroom. It was the beginning of her last week on this earth. And I had no idea.

She stayed in it all day. She told me she wished I had gotten the big screen TV I promised for over the fireplace. We were on a limited income and I'd put it off because we really could not afford it at that moment. Finally I saw what was real. "I'll be right back." I left Kerry with Linda, grabbed Charity, and we raced to Sears, where I had the open line of credit. Except because I hadn't used to they wanted five days to allow such a big sale. That was it. The salesman was ten years old, rude, and happy to make me wait. I was losing my wife. There was a culture clash. Think "Fried Green Tomatoes." "I have the card, and you will make it happen." "It's just a TV. You can't wait a few days lady?" The tears. The sobs. The manager rushing in to see what her ten year old salesman had done. "My wife. Hospital bed. Hospice. Movies. Kids." Suddenly there was a TV available. A better one. Bigger one. A sale. Someone to carry it out. Tracy and Trevor to pick up. A creepy Charter Cable guy.

And Linda never watched it. She would not let me cancel our old TV provider because she DVR'd so many shows. My realization that it no longer mattered was that morning. She wasn't going to get to watch them. But I could play her favorite movies, and she and the kids could share some Mama moments.

We played cards that night. Linda ate what turned out to be the last real meal of her life. Our best friends rolled to our house. They realized things changed. I was slow to catch on. I slept on the couch, pulled up to the bed. We held hands through the bed rails. Intimacy changes in terminal illness. But it does not disappear. At 5am we were in crisis. Linda was sick. Very sick. I called for help. The answering service was ugly, the on call nurse uglier. I called the private numbers for Linda's nurses that they left with us. At 5:30am Saturday Casper was at the door. Linda was so sick, and so out of it. And so began the final week. Palm Sunday was the next day. I missed church. The friends came. Work disappeared. Time evaporated. I flew dear friends in who needed to be there. I heard Linda's doctor, now a friend, saying "I thought we had more time. I was wrong. I promised to keep you comfortable. I promise I will. We'll have a glass of wine in heaven. Wait there for me." I held Linda as we cried that day. We'd known all those years. We were ready. But now it was the end. And we weren't. "I don't want to leave you. This really is it, isn't it?" We snuggled in the hospital bed. She smiled with those who stayed or visited. We laughed. We cried. The kids curled up with her- all of them, and Linda has not only our kids, but our niece and nephew, neighbors, nieces- they were hers. She loved them.

And then it was Good Friday. Linda was telling us movie trivia at 6am. At 7 she slipped into a coma. I held her tight. I mopped. I was afraid to shower, to leave her too long. Calls went out. Food was arriving. I stayed by her side. The dog and cat too. The kids and Kelsey and Trevor. The friends. My back was aching. My heart was too. I could hear the office calling Casper to see another patient. She'd promised Linda not to leave her at that point. The other patients waited. Then "You can turn off the oxygen now. It won't help any longer." What? For two years we had lived with oxygen ruling our lives. No high altitudes. Carry extra tanks. O2 keys in every car, in my purse, everywhere. We don't need it anymore? "She's past needing it. She's passed over. Her heart hasn't caught up yet. She's too young." Damn right she's too young. She's 58. That's way too young to die. She wanted to see Chloe graduate." "I know she did. She'll be there. Just not in this form." Apparently I said it out loud. "She's in heaven already. She's just so young."

And she was. I kept talking to her.I prayed. I counted her breaths. She was just so young, damn it. Her brain and heart, as damaged as they were from the ravages of pulmonary fibrosis, chemo, heart failure... they forgot to stop. I didn't ever want ot forget the feel of her warm fingers in mine. But they were losing their warmth. The cat kept moving in closer. The dog whined. I held her close, making every memory I could, telling her to go to her parents, to Mari, who visited that week several times to tell her she was coming for her, to my dad, who loved her immensely and wanted this terrible disease not to be real for us. One hour, two, three. I kept thinking I wasn't supposed to think about me. My wife was dying. But I was so tired. Her breath was irregular and hard to listen to. I never wanted this to end. And I could not wait for it to be over. This was not my Linda. My Linda danced, and sang off key, and laughed, and played ball, and rooted for the Angels. My Linda never wanted to be in a hospital bed. Ever.

And then, suddenly, there was no more. I looked up. I knew. The sun was shining, the roses were blooming, and my Linda was gone. The first words I thought of were those of Good Friday: "It is finished."

That day my faith was challenged. How does God allow such an incredible person to die such a death at such a young age, with kids who needed her still? What about me? The answer, as I sat in the sun outside as Linda was dressed for the last time in her Angel's shirt and cap, was that her time here was done. But our time, and our love, was not. Her love for our kids was not. Her plans for us were not. It absolutely stinks to have your wife die on Good Friday. But that Easter promise means more. It is who we were, it is what I lean on now with Casper being sick. It is finished is only for now. Tomorrow morning will dawn bright and sunny, there will be flowers on the empty cross at church, we will celebrate family and friends, and the love we share. And we will live that Easter promise. I will get up and sing the Hallelujah Chorus at the end of the service, and hope I will not cry during "Christ the Lord is Risen Today." I'll hear Linda singing off key as loudly as she can to the alleluias in that hymn. And I will know it was finished, but there is life ever after.

Peep Massacre

It's been such a crazy week for us. The Supreme Court hearings about DOMA and Prop 8, vigils, news media, and of course work and kids and getting ready for Easter, and a BBQ, and Casper, and daily life. There was just too much by Wednesday, and usually too much doesn't hit until Friday. That's never good, because I am gone all day and too far to come home, but at least we get to Friday.

Yesterday we had dinner plans and a news channel coming to see us about DOMA. Casper could not get out of bed. Tremors, shakes, and confusion reigned. I am careful now ot wake her several times before I leave for work to remind her where she is, what day it is, and to show her my schedule. By nine in the morning she was calling me, oblivious to the meeting I was in. "Where are you? I need you home. I'm not OK." It was the one day I could not leave the office. There were conflicts afoot, and I had to wait it out to address them. I had to present an inservice. We talked about it three times that morning, and the days beforehand. Yesterday, there was a cloud of confusion, and fear. Pure fear.

"Please come. Please?"

"As soon as I can. I promise. Sleep some more. When you wake up I will be there." Her words are slurred, garbled, and she's having trouble finding them.

With the meeting over and stuff resolved, and in a black cloud of a mood because of it, I raced home. Lunch half hour is now the lunch commute home. In a hurry. Traffic is my nemesis.

Casper is shaking, confused, not sure what day it is, when I left, why I left. We get her into the car after a few missed steps. Five minutes later, she's like a mad toddler. "I wanna go home. I'm all shaky. Let's go home."

"I need to see this patient. Then I promise. But I have to do this first. Please?"

"I don't know if I can..."

I pray, hard. I see my patient. And then we go home, again, before I am off to the next one. Casper is safely in bed before I leave. "Do not go down the stairs. Promise?"

Dinner out dissolves for her, as does the day. The TV crew doesn't meet her. The night is a wash of confusion and reorientation. I use every trick in my training to keep things calm and get her back to the moment, over and over and over. I find myself getting used to it, and see that the look in her eye is still just as loving, and even more secure in the knowledge that I am not going anywhere, that she is safe. The kids, and extra kids, come and go, and she tries like crazy to know who they are and to smile. She wants it to be OK. As she tries to sleep, she tells me she wants her life back. So do I. I want us to be us again, like we used to be.

Today, I awakened to a look of panic, and exhaustion. Garbled words...

"My parents were here. They helped me. I flooded the house. The cleaned it up with me."

Your parents? They are buried in North Carolina. How do I approach this? I can barely think I am so tired from last night.

"The house was flooded? Here, or back home?" No challenge to the facts, just getting more specific.

"Here. I flooded...Flood...down...downstairs." The words are barely intelligible.

"It's all cleaned up? Was it nice to see them?"

"Yes, they helped me. You needed sleep."

So it's Easter week, when Linda usually is around in her own way, and now Casper's parents are visiting too. We may need to add a wing. How do you do that for angels? And then a second thought- did I have my nightie down and not in hot flash mode when they were in our room? (It's OK to laugh in the midst of craziness. It actually helps).

Casper doesn't want to tide today, so I get her resettled. Or so I thought. I stop by a couple of hours later between visits, and the kids look worried.
"
"Mom, Casper went outside. She fell. She called for help. She couldn't get up."

Crap. Yes, I know. Ask someone with dementia on a bad day not to go somewhere and expect them to follow directions and remember? Nobody ever said I had all the sandwiches needed for a picnic.

Casper is in bed. Words are not coming again. She looks like a six year old in trouble. "Did the kids tell on me?"

Oh yeah,, they did. "They were worried." "I can handle it." "I can see that."Back to lucid for a bit. Casper has ideas about how to make Peeps decorations, my newest Easter obsession. Except the ideas does not gel well. I promise to get stuff that will work. She looks excited.

Back home later, I show her the goodies. Then I discover we need more Peeps. Apparently the PD sweet tooth has caused a massacre of the Peeps I just bought. Casper isn't wearing lip gloss- she's wearing Peeps! Tomorrow night we will make Peeps decorations after Good Friday services. She's happy. Then worried. "But tomorrow is Easter." Five minutes ago it was Thursday. I know time flies, but not all the way to Sunday. I force my shoulders, which are tightening, to relax.

"Nope, tomorrow we get ready for Easter!" An hour later I am getting ready to leave again, and Casper is surprised I am here. "How did you get in?" I almost said I used my transporter. I check myself. "Want to ride to Beaumont?" A cute smile- I think I see what Casper looked like when she was a little girl. It makes me smile and feel sad at the same time.

"Yes, let's go."

"Wait- what day is it again?"

Waiting for the Supreme Court

When I first met Linda and we knew were we the ones for each other, it was magic. We were so excited, we could not wait to share it and to celebrate it. We planned a “Holy Union” because being married was not even on the radar in those days. It was a quarter of a century ago, and our church, which is now one of the biggest supporters of marriage equality, refused to allow us to use the sanctuary or to have the main minister perform the ceremony. We were relegated to a side parlor, and we were happy for that. We had no role models to follow, we had to find a florist who didn’t wig out over doing flowers for us, and we chose probably the most hideous outfits I will ever wear. I have no idea what I was thinking, other than we were getting married!
Even then we faced some hurtful comments. One of Linda’s brothers planned a sudden month long trip with his family out of state. My mom looked like she was going to my funeral. She kept asking what we were planning to do at the ceremony. Linda finally said “We’re going to take our shirts off and rub our boobs together Margaret. That way we won’t kiss in public.” But it was a fun day: my parents relaxed, the music took too long, Mari threw pebbles at us while my sister was taking pictures, we forgot we needed an acolyte (thank you Adam)and we felt like we had made it known we were, in fact, as married as we could be.
Fast forward to San Francisco in 2004. Linda and Jill, Sherry and Tracy, Connie and Celeste, Kim and Kristy, Kerry, Chloe, Trevor, Kelsey, Dylan, Drew and Mollie. Sherry on crutches, all of us pulling our rolling suitcases, and we were on our way to get married. It took almost 2000 calls to get four appointments for marriage licenses. We borrowed a church and brought our minister Jane. When we finally got to the church, in our limos with our kids in two and dressed for a real, live, legal wedding, one of the kids burst into tears. Because this mattered. It really, really mattered. We were racing the clock to get there in time. But we got to hear “by the power vested in me by the State of California..” We had to race to get the licenses filed, and we hummed the theme to “Chariots of Fire” as Connie ran into  the Clerk’s office to get them filed. And then we were annulled by the State Supreme Court. But for that brief, glorious moment, we were married. And nobody could take that away from us.
Then came 2008. Prop 8 was looming. But there we were. We had just months to get married. We knew it. When the court decision came down that opened marriage up, I was at work, across from Sherry. We looked at each other and said “Ready?” So on the hottest day of the year, and maybe the century, two couples were married again, in our own church, with our bigger kids, and this time it really mattered. We were really, truly, legally married. And nobody could take that away.
Until Linda died. When I was relegated back to Domestic Partnership, not marriage. Where you file a piece of paper with a notary, and mail it in.
I so wish I could make people who are safely married and have never had to think about this understand how much it means to be married. How many protections they take for granted. How often they can assume they will be treated equally. And how different it is for the rest of us. My life with Linda and my life with Casper collide at moments like this because Linda and I faced so many of these challenges, and then were finally able to be legally married for two years before she died. Casper and I can’t get married in our own state, and, Like Linda and I, our marriage would not be recognized by our country. Civil unions , domestic partnerships, other arrangements that are supposed to be like marriage but not marriage- they are not marriage. You are not treated like a married couple. Separate and unequal is truly what it means. Those who feel they have a right to judge and denigrate feel empowered to do so because they know you are not really married, and they can say what they want. It’s happened so many times:
• Linda’s first mastectomy- I was locked out of her hospital room because her nurse felt she could, despite my Power of Attorney. In Florida there are still no protections for same sex couples.
• Not being able to take time off for taking care of Linda because we were not legally related
• Being denied leave to attend our nephew’s funeral because he was not “really” my nephew
• Not being able to cover Linda on my health insurance when she was sick so she had to work all through chemo or risk losing her insurance.
• Seeing and email from Linda’s boss at Riverside County after my dad died. It said “Linda and Jill are only Domestic Partners, they aren’t really married. I don’t have to allow bereavement leave, do I?” (The answer was no. That answer changed with my promise of a lawsuit.)
• Being challenged at hospitals and doctors for our DP paperwork and then our marriage license to “prove” we were a couple, while watching straight couples being treated as if there was no question at all that they were really married.
• Being told by the VA that I was not married to Linda in our country and I could not sign for her burial at the National Cemetery. (We chose a different one).
• Being asked for my marriage license for Linda’s cremation (thank you Stacie for stopping that stupidity).
• Being told we had to provide proof of our relationship at the hospital when Casper first got sick, and then again for every single procedure.
• Filling out paperwork and having to choose “other” as marital status. Who wants to be an “Other?”

It just never seems to stop. The differences are indeed profound. Colorado joined other states in passing civil union legislation this week. A few years ago I would have been excited to see that. Now, it’s just another state where gays and lesbians are supposed to be relieved they have some of the protections their families out to have , and none of the respect married couples have. Such a mindshift, and heartshift, in such a short time.
We are waiting for the United States Supreme Court to hear oral arguments this week regarding Prop 8 and DOMA. Those decisions in June could have a huge impact or none at all. It’s like living life on a string, being decided by voters who do not know you and justices who have agendas of their own. I feel like the marriage equality commercial from Europe where a gay couple had to go door to door asking their neighbors if they could get married. I hope we will finally see “By the power vested in me by the State of California” and a license that means we are married in every state. That we will finally be just as married as everyone else.

"I'm not sick."

We are waiting for the gastroenterologist today. Waiting. Waiting. He is on time. We are early because Casper was ready too early but could not wait to leave for the appointment. Finally he comes in. We have seen him before. There is some recognition.

"Hello ladies. Why are we here?"

I am quite sure Casper is going to deck him. Calling a butch a "lady" is not such a terrific idea. Over the top humor is even less so.

Casper has decided in the last 48 hours that she's not sick, and she's back in charge. She jumps in where I was left to answer before. "I can't swallow well. I need it fixed."

The doc pulls out her chart, with the full color pics of the last two times we were here before. During those visits he told me, emphatically, that neurological problems have nothing to do with internal organs. I know better now. I am Mrs. Parkinson's Disease, and I have the research under my black belt.

"You were here in 2012 and 2011. There were no issues then. It would be unusual for there to be such a sudden onset of symptoms if it were a stricture."

Hold the phone. No issues? I was here the last two times. I was here when I handed your MD self a printout about PD and said "I think this is PD. It all checks. And her swallow is slowed."

I challenge him, nicely (yes, even I can be nice. Do not get used to it.). "Wait- you found a slow swallow last time. In 2011. Do you see that?"

Oops... (I love those moments. Maybe you should not pretend to be God and listen to family who have a brain and can read and research.)...

"Yes, there was a slow swallow. It looks like there was a problem with that then."

I know this is a stupid question now, but... Why did you NOT make an issue of it then???

"Which neurologist are you seeing who said this is PD?" Nice try. Only the head of movement disorders at UCI and Eisenhower Medical Center.

Then a cry from the exam table: "I don't have PD. They are wrong. This is something else."

Oh crap. And I mean that. Casper is the living example of coping with denial. She cannot, and will not, accept this is PD. That's where she needs to be to cope. I get that. But I have to live in reality to get the help we need. She's choking. She choked three times on our way here. Saliva is now dangerous, especially when she is asleep. Diet 7-Up is not her friend. How do you survive without fluids? We live in Southern California! It's going to be 105 degrees in a few months.

The doc looks at her. He can see the tension, and our primary care provider must have written something, because he's looking at the referral and suddenly accepting her denial. "I need to see if there are any changes. There were no strictures in 2011. It would be odd to have prominent ones now, but I need to look. Will you allow me?"

Thank you! Casper finally feels in charge. She has to have a gruesome scope, and another IV, and more drama, but she gets to to make a decision. "I guess."

If there is a blockage, the doc will stretch it to make it disappear...

"What if it's not a stricture?" The silence is deafening.

"If it's not, it would be caused by Parkinson's. We can't treat that. If it is PD we would need to eventually look at feeding tubes. But I am not saying we are there now! We need to wait!"

We have already been there. That discussion is over. No feeding tubes, no pegs, no artificial anything except pain management. Lots of it.

"What about the fluid build-up?" He looks trapped. A doc without an answer he can jump on to make it better.

"We will have to wait for the results."

Yes, we will. And for Casper to come to terms. And for my heart to catch up. In a weird way we are already there. In another light years away. I know there are meds that will help. I know we will have help. I respect Casper's decisions. I know I will struggle to keep my promises but I will all the same. I know we have both seen enough of late stage PD to not want that to be us. And I know we will see this through. No matter what, no feeding tubes included.

"We will get you in as soon as we can. I will fix it if I can. " And that's the rub. You can't On the way home I think about how suction might help, and all the teaching I have sat through telling families that suction can do more harm then good. I call some of my nurse friends, and am reassured they will be there if we are on a quick path, and even if we are not. Casper and I talk about our next trip.  And we both avoid the topic in the middle: This is PD, and we have to face it if you are choking. And I have to be ready again.

I am not. But I am working on it. And we will be holding hands tonight in our sleep.

"Is it 12 day or night?"

"I can't find you." The voice on the phone is fuzzy and the words are not clear. I know it's Casper- but it sounds like she doesn't know she's Casper right now.

"I'm working. I'm nearby."

"The clock says 12:00. I didn't know if it was day 12 or night 12." If she didn't sound so worried and confused it would be funny. But it's not. "It's noon sweetie. Let me come get you."

Five minutes later she's dressed but not completely upright. More like a tall ship in a stiff wind. Her entire body is going right, and her legs are following. Even her cup is at an angle in her hand. I'm again grateful she's using a cup with a lid and straw.

"Are you home now?"

"No, I came to get you. We can ride together today for a while."

"Are you sure?" It comes out sounding like a quiz about sherbet.

We have some trouble getting her into the car. Organizing feet and legs and arms and cups and the handhold to get into the Sequoia is a lot for her to manage today. That's weird, because Casper is a big truck aficionado. Finally in, she's disoriented- and today she can't cover it even a little bit. We have more slushy sherbet talk, Casper thinking she's clear as a bell, me straining to figure out the conversation.

Her phone rings, and she has trouble figuring out how to answer it. Then her brother is on the phone, and she has a connection again. I am relatively sure she sounded unusual, but he kept trying to have a conversation. When they were done she handed me the phone to turn it off.

Casper looks over intently. "I need choc-o-late. Something." You need what? "Can we get snacks?"

We stop at the monster sized bookstore with the coffee shop, and on the way to the books I need for a patient (MSW occupational and safety teaching- if you can't stand in a kitchen, use a crock pot and low sodium recipes!) we pass a shelf full of puzzles. Casper has dozens at home. She obsessed over them when this first started, then lost all interest and eventually could not manage the pieces with her tremors. Our bedroom had a table for puzzles, but she almost fell over it so many times we pulled it out. Today she's forgotten she doesn't like puzzles.

"3D. We can build a puzzle!" Oh my God. Jill building anything like that- yeah, this is why I hated geometry with a purple passion.  I can't figure out the simple items from Ikea. "Let's get the Eiffel Tower." Oh yeah, that will be easy. Suddenly I am holding a boxed, cut up Eiffel Tower for my own personal torment. But Casper is smiling and proud of her find. "Cookbooks. Want to help me?" "No, I know how to cook. You go find it. The letters are too small."

On the way out the bakery/coffee shop calls to her. "They have snacks.I see doughnuts!" The look on her face and her sudden brief smile remind me so much of Linda when she wanted something she knew better than to get- her "Please, Jillie, I'll be good" look that I miss. I can almost hear Linda's voice too at that moment. My two lives are colliding. The display case is filled with choc-o-late goodies: cream puffs, cakes, doughnuts, cookies... Chocolate chocolate chunk cookies. As big as a plate. Eyes sparkle. "I want two." I can hear Linda laughing in the background.

On the way out the check out is confusing, and the displays are tantalizing. We end up with extra stuff to take notes. We don't buy a single nursing book, which used to be the number one bookstore item for my nurse who never wanted to stop improving her skills and knowledge. She used to read medical books and assessment skills workbooks in her spare time so she would stay sharp. She kept that secret so she could be a better nurse. Today the look on her face as we passed those displays was pure sadness.

In minutes her face was covered in chocolate goo, and she was waving her hands around, like she was looking for something. "What's up?" "I forgot I quit smoking."

On the way home later she was asleep, unable to swallow properly, and choking. I wake her, and she doesn't recognize the neighborhood immediately. Even Casper can see something is really wrong today. I feel sadder still- just a few days ago she was insisting she was not sick and could still work. Today those sails are down, not just listing. It's flat air. She's afraid to be alone. 

Moments later she's in bed, asleep. The fear is gone for her, and she's resting peacefully. My two worlds continue to collide. I go back to work leaving my wife in bed, asleep, fighting a disease we can manage, but we can't beat. As I head out the door she wakes up and tells me she loves me. Her eyes are locked on mine. Old times and new times- illness be damned, love does conquer all, in it's own way.

"I am a nothing"

“I am a nothing. You don’t know what that’s like.”

How to answer that? The obvious, of course- you are NOT a “nothing.” You are my everything. You matter. This disease sucks and has taken your purpose and value that came from your work. I GET that. I just can’t FIX it. How I wish to God I could.

Where did this conversation start? Somewhere stupid, of course. Casper won’t wear her glasses, but she can’t see well without them. That makes her more disoriented and dependent because she can’t see. The obvious answer is to wear glasses full time, not to depend on me. It’s bad enough when you are already a bit fuzzy. To add voluntary vision issues is just, well, …not such a great idea, to say the least.

“Why won’t you wear them? They help, and besides, you look great with them on.” “I just don’t care to.” Had I listened with a third ear, I would have heard “Because I am already different, dependent, and feeling old and decrepit. Why should I wear glasses all the time too?” What I heard was “I just don’t wanna, and you can’t make me.” You just know where that’s headed, don’t you?

I KNOW this stuff. I spend hours daily with families in this situation. Whether it’s using oxygen (I don’t like it), or a walker (I’m not a cripple) or having a caregiver (you can’t make me), I see this all day long. The behind the scenes answer is “I hate what this disease is doing to my pride and independence, and you are rubbing it in.” “I want my old life back.” “I can’t accept my life has changed this much.” I totally agree. It’s lousy when anyone becomes dependent. When driving is dangerous. When a career has to be left behind. It stinks. But it is a reality, and has to be faced.

“Okay, fine. Don’t wear them. I’ll carry the spare. But I think you would be better able to find your way around if you had them on.” Woops- cardinal sin #1. Never, ever tell a person facing loss that you know better than they do. Salt and wounds do not mix. I can see the reaction. Instantly.

“Let’s get all of our eyes examined. We have our new insurance. Let’s just get everybody checked. Maybe contacts?” Spread the pain all over? Normalize it? “Nope.”

Silence. It takes up a lot of space. It’s overwhelming. And it never happens like this between us.

“I want to go back to work.”

Oh crap. Now what?

“I’m nobody. I don’t do anything.” Just then Kerry calls. On Casper’s phone. Checking in, letting her know when she’ll be home. Casper’s line- not mine. “That’s one person you are somebody to. We NEED you.”

“I can do my job. I am good at it.” I know you were. You were truly one of the best nurses I saw with hospice, here and in Florida. You cared with your heart, but were objective too. You never ever lied to anyone about a rosy prognosis. You were on top of symptoms. You guided patients to tough decisions. I saw it in the field, I saw it in my home with Linda. But you can’t do that anymore. At least not now.

“You can’t work. Dr. Mall said so. Our memory is too challenging, and you get too tired. You are exhausted sometimes just walking upstairs. How would you drive?” “I did it before. I am fine. I don’t have Parkinson’s. I am not sick.”

This is just getting better and better. It’s late, we are tired, it was a long day and included difficulty with a phlebotomist who shouted the names of Casper’s meds all over the lab and who was incapable of doing her job. Now this.

“I want to work.”

I get that. I wish you could. It would help the economy in this house, and would give you purpose. But you shake some days so badly. You sweat till you are soaked. You sleep late and nap, and early. That doesn’t add up to work hours. I try to point that out. “I can manage it. I am not sick.”

Hardball. “You have every single symptom on the PD checklist. You even have the ones nobody counts. Your memory sucks. And you know it.” “Nope. I am fine.”

Harderball. “Okay, go back to work. But you can’t miss any days. Because you are receiving Social Security, and it took an act of God to get it. You are about to get Medicare. No more HMO nonsense. No more begging for referrals. You can finally see the neuro without three visits to a primary care provider and paying him to write a referral. But go ahead. Go back. And when you are too tired three days in a week, there won’t be income, or insurance. And I will get to do it all over again. The letters, the records, the appeals. And by then Medicare might be done by voucher, and you will not find coverage because you do, indeed, have PD. Then what?”

“You had to do all that?” Yep, indeed. Social Security is not a walk in the park. It took hours, and miles, and letters, and phone calls, and money. And it will again if you earn more than a few bucks. I KNOW you hate not working. But to undo all that?

“You have an entire workshop in the garage. You have not even used the tools.” “I have no interest.” “The Student Run Health Clinic needs nurses. You could manage that twice a month as a volunteer.” “I want to work. I want to contribute.” I get that. You have worked since you were a child. You picked tobacco, hung it in the barns to dry, cooked, washed dishes, worked in a factory, graded roads, and became a nurse. You have worked all your life. This is not you, and not fair, and not okay. But it is reality, however ugly.

“I am not sick.” And you turn over and shut your eyes. I know you are not asleep. In your sleep you choke. Two hours later you are finally out. You are twitching, and jumping, and struggling to get air at times. But at least you are asleep. I am now wide awake. I am reconfiguring my day for tomorrow, so you can ride along for a few hours in the middle of the day, because you really cannot wake up early anymore. You used to get up at 5am, make us coffee, wake me with a steaming cup and a kiss, iron our clothes, and get the day started. Tomorrow I will wake in the dark, feed the critters you used to feed, and get myself out the door on my own, because you are sick, and you are not able to get up any longer. And it just sucks . But it is what it is. And we either make the best of the good moments, like days in Yucaipa that turn into lunch in the apple orchards covered in snow a few miles away in Oak Glen, or we can argue and fuss over reality. Tomorrow I will call your sister and brother and ask them to call you. I’ll get you out in the car. And we will relocate common ground to make this new reality more tolerable as it sinks in.

A Better Sleeping Tip for PD

We just saw another specialist today. Once I got over the fact that he looks too young to be employed, I found him to be full of new ideas and ready to keep learning, which I love. Better yet, he addressed Casper directly, congratulated us on our wedding, and went the extra mile to do a complete exam by calling our other doctor by phone during the interview process to ensure he had a complete persepctive. He also added our neurologist to his referral list after reading his report, and told us he was thorough and had done an excellent work-up, and that he didn't say that very often. How refreshing is that? When Casper told him she didn't like the PD diagnosis, he took time to ask enough questions to understand that she gets it, but doesn't like it, and isn't at the same level of acceptance I am yet. He also told her he respected that. Score!

So when we talked about her symptoms from the list we brought in, he saw sleeping is a problem. We talked a long time, and he asked about how I defend myself on the bad nights that she is throwing punches in her sleep. He said he'd heard from another PD family what worked for them. They removed their head and foot boards, and bought new, seperate bedframes. Then they used their existing twin boxsprings, and added deep memory foam moisture wicking twin mattresses. Then they put them together, but with twin bottom sheets. When the PD spouse was rocking and rolling, the other one could not feel it because the frames and deep mattresses absorbed the motion, and it was not transmitted across to the other bed. Such a cool idea! With PD there is so much sweating that happens that beds can become like hotboxes. A wicking mattress? Awesome. No more pillow barriers? Even better!

Time to go mattress shopping.