"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.

"It's One of Them Days."

I can always tell when Casper is exhausted or not thinking clearly. Her southern accent and grammar comes roaring back. Suddenly I need to "gas up the car" and "clean out the boot," and dinner becomes supper. And when the PD is out of control is becomes "one of them days."

Those days are the ones folks who do not have chronic illness or movement disorders do not usually see. The person who is affected can't go out, can't function well, and usually self-isolates and stays in. It's exhausting and embarassing. If you are in public and you list to one side and stumble those around you think you are drunk. Forming words is difficult. Drooling is common. Who wants to be seen like that?

So those days are spent inside, away from all but those who are inside the innermost circle. For Casper it means her world becomes our bedroom, and even that isn't all that safe. Stumbling and falling are constant dangers, and reminders that there is nothing normal anymore. Yesterday she finally admitted she is choking on almost everything, and any liquid is hard to swallow. Not only does food not taste good, it's now dangerous at times. She can't eat alone anymore. It's not safe.

Tremors have another side effect- they create anxiety. That's part of the reason it's so hard to diagnose this stupid disease: doctors can and do tell you the problem is in your head. You are anxious, and shaking as a result of that. The opposite is actually true: you are shaking, and it causes anxiety to be constantly in motion and unable to stop it. There is one thing that is true: it IS all in your head!

During "them days" Casper can get so anxious I have to reroute my day to get home periodically just to calm her down. She tries really hard not to ask, and sometimes she can't use the phone because her hands are out of control, but if she calls I know I need to get home. Today I will find a way between Hemet and Yucaipa, because it just has to happen. That's when I am envious of those whose PD showed up later. They are already retired, and they are already at home. I don't wish PD on anyone, but being retired would be a whole lot easier.

Last night Casper's hands were clutching and shaking all night. Non-stop. I woke to pinching on my arms repeatedly. She was out cold, but her body forgot to sleep. She shook off the bed, levitating with big tremors, kicking with smaller ones. Her face was broken out this morning from the contstant drooling. She woke up exhausted. I am going to work exhausted. Starbucks will be my very first stop. I am actually grateful that Chloe is now driving and the first ride of the day I am not behind the wheel. I so never thought I would be the one to say that!

At work yesterday an administrator asked how Casper was. I am afraid I have lost my filter. If you ask, I will tell. I do that because it's so easy to say "it's good." The reality is nobody sees the bad days- they are locked in our bedroom. My reality is that no matter how it is at home, I need to be positive. Being negative does not help. So I talk, and I write, but life is what it is, and fighting it gets you absolutely no where.  It is possible to have them days at home and still smile. Because I am still lucky to have a smile looking back at me on the good days.

Tomorrow we go for the ECT assessment, to see if maybe that will provide some relief. Friday we see the doc again to talk about the choking, and to ask for atropine or scopalomine patches. Maybe Saturday can be just another day, not one of them days.

Asking for help for the first time: 3/2/13

"You have to go? I wanted you here. It’s a bad day.”

The shaking is severe today. Casper’s unable to hold a cup in her hand, and I’m grateful she’s adapted to using an insulated cup with a top and a straw. Her Diet 7-Up will stay inside, not land on the bed.I have to go to work. I have clients to see and a private practice to hold up on my end of the business. I need to be home. I worked too many hours last week, and today she needs me.

“Let’s go outside and get some sun before I go. It will feel good.” She tries. Her legs won’t hold and her balance is off. It’s been getting worse all week. The kids saw her fall into the door twice and ran to help, but she is too proud, and wants to keep the reality of PD away as long as possible. Today the stairs would be a scary idea.

She lays down, piled on pillows. Kerry bounces in. Our little Tigger. She senses the kind of day it will be, and curls up next to Casper. “Will you keep an eye on my today? Mom has to leave, and it’s one of those days. I can’t be alone.”

I am stunned. Casper has never ever admitted she needs supervision. She’s focused on Kerry, and won’t look at me. Later I see her eyes glistening. “Sure. I’m feeling cruddy. We’ll be cruddy together.” Not a beat missed. We get the cup filled between the three of us. They pick on me for not crushing the cans we recycle to reduce the recycling volume. Talk about plans to really truly move to Hawaii. TV shows are selected- what gory ER or medical monstrosities can they find to watch?
Casper naps a few moments, wakes with a start and shaking worse. Instant anxiety reaction to the shaking. She yells for me, and I hold her till it calms enough to rest again. “Dr. G” is found and the two of them settle in. Kerry on her iPhone, Casper snuggled in.

I am off to work, to be attentive and supportive to my clients, then home again to adjust to a new level of PD in our lives.

When I get home, Casper is asleep, but wakes when she hears me. Sort of. She is still shaking head to toe. Her head can't stay still. She's hungry, but only sweet stuff sounds good. She eats the chocolate cake piece I brought home for her, then asks what else we have. Ice cream was the magic answer. I bring it up, and she can't form words. She nods her head- still hungry. She tries to take the bowl. No good. The cake crumbs are all over, and she can't hold the bowl or the spoon. She can't find her mouth. I offer to feed her. For the first time, there is not argument. There have been times before now where she needed help, but not like this. Today is a whole new level of PD ugliness. Casper can only nod, almost imperceptibly, to say she wants more. She chokes several times. This is ice cream! How can you choke on ice cream?! Ask PD- it makes anything possible. I wipe her chin- PD also causes drooling. Pretty much any little humiliation and PD will step right up.  She lays back down.

A few hours later I have my crock pot almost done for tomorrow, and have the yams she loves and mashed potatoes in the oven. The pork chops we were supposed to make are sitting in buttermilk, waiting. I make awful chops, every time. I know it. I have no idea what possessed me at Costco yesterday, other than price and the size of the package. We feed a lot of kids around here. Tonight there will be five at the table, plus us. I have no expectation that Casper will be joining us. I asked her earlier about the chops: "Honey, remember how you used to cook pork chops? You butterflied them and grilled them?" ..."No, that wasn't me. I never did that. I batter them and fry chops." (here's where my stupidity sets in, again) "No, you used to cook them for me in Redlands. They were great." "Nope, not me." Never argue with memory loss. Neither of you can win.

So I was pondering what to do tonight, and Casper arrives. Dressed, showered, ready to cook. Almost mad I hadn't come to get her. Three hours ago she could not walk or talk. My head spins. (I have only had one glass of wine- it wasn't alcohol). She gets the chops out, and I pour the eggs and flour in bowls. Casper knows she can't manage a bowl, even now. We send Charity out for Crisco, and a bit later Casper is making pork chops, at the stove. She could not work the controls, but she's cooking!

Four hours ago she could not eat ice cream. Now she's eating yams and pork chops. Really, really good chops, I have to say. She does dishes with Katrina. Then she's down again. Listing as she walks in our room. completely exhausted, sweating, and can't find words.

Casper may be listing, but I have whiplash. PD whiplash. Wth this lousy disease it's hard to know whihc end is up (Unless you are on the floor...)

Our First Parkinson's Support Group Meeting: 2/20/12

“You know, there is a support group for PD once a month in Riverside.”

“uh huh.”

“Maybe we could go this month?”

“I don’t think so.”

“But I want to. They have speakers. We can meet other folks like us. We can learn from them. None of our friends are facing this. Just us.”

“I dunno.”

Three days later…

“The meeting is tomorrow. I want us to go. Please?”

“Maybe.”

“I will be home at 12:30 to pick you up. If it gets too long, we’ll leave, ok?”

Who can believe that Casper actually got up and got ready, especially after tremoring all night for two nights? And having olfactory and visual hallucinations? How much can one person take?

So we were late, of course. There was rain. Traffic. Children. We walk in, slowly, at 1:10pm. Casper is listing to one side. The lady at the front desk of the Senior and Handicapped Center (How’s that for a happy name?) knew immediately what group we were there for. That was a little shocking. We try to find a seat, and there are none. She’s rocking to one side. I find the leader, who I met last week, and she gets Casper seated right away. We look around.

The lady next to us who is falling from her walker seat. The man in front of us who uses his coat pocket to keep his arm in check. The man across the way who is at 90 degrees to his walker chair and jerking from side to side, the man who is bubbly and full of ideas but cannot control his voice or thought process. We are the only lesbian couple. We are also almost the youngest folks there. I am suddenly afraid. Deathly afraid. For both of us. What is this doing to Casper seeing this all around us? Is she going to be able to cope afterward? What happened to our life? I want to be back on Maui with the surf and the whales and the peace. This cannot be our future.

But it is.

The man who is telling us about voice training so his wife can hear him. I poke Casper- you need that. I told you I can’t hear you. She responds- you think I speak too softly? Umm… yes. The guy talking about drooling. Poke. She glares. No, I say, they are talking about using meds we know from hospice. Why didn’t we think about that? Atropine would be great. Of course that was the PD. We just didn’t put it together.

There are introductions. Casper refuses to talk the first time. I say a few words about her diagnosis. I kick myself a few minutes later for not saying “And she’s a nurse. She worked full time before this happened. We had a busy life. She knows this stuff.” Next time, I will. She will be a nurse first, a patient second.

Then the big shocker- her sweet tooth. Yep- PD 101. Lose your sense of taste except for sweet and sour, and you get an instant sweet tooth. Casper didn’t have the words to tell me she could not taste other foods, and I was too stupid to put it together watching her refuse to eat almost everything. Hell, she lost five sizes. I did not care about her sweet tooth. I just wanted her to have real nutrition. She could not think to tell me she could not taste it. Suddenly 70% of the patients there were raising their hands confirming they had lost sense of taste and smell, but had weird smells occur that were not there. Olfactory hallucinations, a result of seizure activity related to PD. Who knew?

Then her dementia raised its head, and she was one of very, very few there today. “When is snack? I want a cookie. I see cookies.” “Hold on. They will say it’s done and then cookies.” When it was over, the line around the sweets was immediate- and Casper was first. And there was Blaine, from our church. “I never met a chocolate I didn’t like.” Bless him. Always gentle, always kind, and sharing brownies, by the handful, with Casper. Three trips to the brownies today. More to go.

In between, she handed out the hand sanitizers and pens I brought from hospice. She worked the room, although a bit less steady and a bit less sure, like she used to do when she was doing BP and blood sugar checks at senior centers as a nurse. I watched, aching for the nurse and Casper she was before.

Part way through Casper was not so sure we belonged there. Three quarters of the way there, when we needed a bathroom break she wanted help to get there and was unsteady enough that she didn’t shake off my arm to steady her. On the way home…”You ok?” “yuuup.” (North Carolina slides in at tough and tired moments.)” “What did you think?” “It was okay.” “Can we go back next month?” “I think so.” “Glad we went?” ….”Yuuup.” And then she was asleep. Exhausted from all of it. Tonight the tremors are exceptional. And she’s waking up over and over to make sure I am here. PD 101. Always a learning experience

After the Parkinson's Diagnosis: 2/16/13

“How’s she doing?” comes the well meaning and loving question over the phone. I glance. Casper is awake and listening, and knows who is on the phone. One of her dearest friends. Now what? Truth? Soften it up? Short conversation with a reference to talking online later?

Truth it is, with multiple “ok?” questions back to Casper as we speak. She won’t pick up the phone most days. It’s hard to figure it out sometimes, or else it’s too much effort. Today is a better day, even though I have shared my cold and Casper is now suffering through the same sore throat and fever. She smiled more today. That’s huge, because with Parkinson’s you lose your ability to smile or show any affect on your face. I struggle with that one. I miss looking at her and seeing her smile back. A blank stare is hard to figure out. But today we had smiles! I harassed her about a family bbq, and she was able to smile while calling me a brat.

So tonight I trusted that if my answers were too close to home I would see some part of that on her face. “She’s ok. Some days are good for lots of hours, some days it’s mostly just bed. The pain is really hard.” How did she do with the diagnosis finally being made? How to answer that? Relief it was all real? Despair about what was coming? We both worked for hospice. We both saw the patients with the diagnosis of “paralysis agitans.” It was always, always awful at the end. We both know it. Patients in bed, trapped, unable to move, with pads to prevent injuries from seizures, decisions about feeding tubes, catheters, diapers, diets of thickened liquids that taste like crap. And death from pneumonia if you are lucky, rather than sepsis and skin breakdown. Before that dementia that steals your mind, causes stress, and takes away the person you loved, trapping them in a helpless, shaky body. The sad part is when the shakes decrease the symptoms are actually worse. Who wants that? When we were eating lunch before the doctor saw us, before the diagnosis was said out loud, she choked for the third time in four days. Food just will not go down some days. I looked at her and we both knew. “Do you want a feeding tube when that time comes?” “No, not ever. Not if I can answer or if I can’t. Do not keep me alive.” That look was unmistakable. No messing around.

“She’s doing okay, really.” We were glad it’s finally got a name, this thing that has taken over our lives. “She’s adjusting, and we are looking forward to the treatment that might make a difference starting next month.” Of course, I am talking to a nurse. Because all of our friends are nurses and social workers, with the odd mortician or college professor thrown into the mix. “You don’t want Cinemet. You know that?” Yes, we know it. And it didn’t work when we did try it. It only works in the early stages, and we missed those while we fought for a diagnosis. We are in the deep brain stimulation stage, and we have an HMO. It could take months, or more, for approval. But they care, they really, really do. That’s why it took 37 phone calls to get the ECT initial appointment set for next month, and why I had to drive all over town to get records faxed.

Casper- you okay with this? Smiles. Yes. The friends who know this stuff need to know what’s going on, because they will be our support in making the hard decisions later. They need to know where we are now. “She’s able to get up some days, not others. Some days are all day in bed, some days she can ride with me for four hours. We had a good day today, and she’s been down for hours now. Dinner went down ok too.” The unsaid words. You know what’s coming? And how soon it might come? Yes, I do. Yes, she does. But maybe we can keep her active and alert, despite dementia, for longer. Just maybe. We do not do denial around here. We have both seen too much. During the nights I relive Linda’s death over and over, Casper wakes me up and we talk it through. The inevitability, the peace she came to have, the love shown, the loss it meant. Sometimes for hours. Now I wonder- when will I be doing that again?

“Lunch on Sunday? With the gang? Can’t wait.” If I prepare her enough she will remember it and look forward enough to pull the energy for it. And she is up for it. I can see it in her eyes tonight. She will work on remembering names, the day and date, things to talk about. We’ll review them in the car that day, and I will sit next to her to choose food from menus that are sometimes foreign objects. This one will be her friend with pictures of pies, and soup that does not choke. I got this one. She will rest all day tomorrow just to be ready. Parkinson’s causes acute muscle pain all the time. Shaking is painful. Trying to stop shaking is more painful. Trying to walk is difficult. So she will stay down and low, and sleep and rest. And she will work really hard to get up, and showered, and ready for Sunday. We will have maybe four good hours, and make them count. Because we have this. And we can make it work for as long as we can. Stupid Parkinson’s- we are still ahead of you.

We got this! When life hands you Parkinson's, make Hawaiian Shave Ice, frequently!

 

 

Wait- It's 2013?

We had a great time in Hawaii. Waves, whales, sunsets, birds on the lanai, our wedding, friends nearby, and total relaxation. There were moments I recognized the confusion, but Casper can cover it so well, and I so wanted to see it covered. Maybe, just maybe, things are better? Please?

There were moments. The day we were going to Sheri and Dan’s vow renewal. Casper got out her best dress pants, dress shoes, and the shirt we’d decided she would wear to our wedding. “Why do you have those out? It’s sprinkling a bit. Maybe your striped shirt and jeans?” “Aren’t we getting married today?” No, babe, that’s the end of the week, not today. That’s at sunset, not in the morning. My hair is down and I’m in shorts. Can you see the cues? Please see the cues so I do not have to explain. That’s so hard…

Today is Monday. We are getting married Thursday. The last day we are here. 1/31/13. Remember how we talked about the date looking alike? Yeah, no. You don’t. That was my conversation. It didn’t sink in enough to be yours. How do I cover this so you don’t feel out of it or stupid? “No, baby, we get to have a sunset. I wanted turtles, remember? For Linda?” A look of relief, a cover.. “Oh yeah. We are… a different day. Right?”

Waking up, and finding the sliders closed, the surf shut out. “Why is the door closed?” “It was so loud. Why is it so noisy?” That’s the ocean. That’s where the whales are that you love so much. I LOVE the sound of surf. I would sleep outside at the beach if I could. Now it is “noise” for Casper, who at night does not understand the sounds she is hearing.

We are headed to the airport. The route on Hawaii 30 is delightfully distinctive. Open beaches. Whales. The section with the trees over the road, next to the beach. It’s unforgettable. Unless you have dementia. “Why is this taking so long? We should be at the airport by now.” “No, babe, remember, we drove here before. You loved how pretty it was. You and I talked about North Caroline and Florida. It was like there. Remember?” A look of confusion for the briefest of moments. “Yes, I remember.”… “You don’t, really do you? This is all new to you right now, isn’t it? Tell me the truth, please.” … “Yes. I can’t remember any of it.”

Then there are the moments I see you again. The rough flight, where I grab you hand when I am scared. You grab back, and look at me and calm me down, just like old times. The airport, where this side of the trip you are ok and can manage to wait without getting agitated.

Then we are back in Riverside. The next day you growl, in a not pleasant way. It scares me. I have never, ever seen you look at me in anger. You keep to yourself all day and all night. Maybe working was a good idea today, because you are not you today. My Casper would never ever even look at me in an angry way. Not ever. We have an understanding about it, and you have always kept your promise. But today, all of a sudden, you are not , well, you. And you know it. When I ask, you say “Not a good day Babe. Please, just let me be. I don’t understand me. I don’t know what is me.” I keep my distance. And for the first time dementia is scary to me in a palpable way.

But Sunday dawns and you are up for church. You volunteer to help with Coffee Hour, which you call “Snack time.” You actually remember Sherry and Tracy’s names. You can find your way around the building. I relax. Maybe the bad times are over. Maybe it was stress and jet lag. Please?

We go see Charlotte. One of your fans at church. One of the people who never ever calls you “Linda.” Who loves you for you, and for us. We are visiting. She and I are talking. Suddenly, you interrupt the flow. You are scared. We can see it. The calendar. “Wait- it’s 2013????” … “Yes, babe, for over a month now.” “But it can’t be. My license is expired now.” What? Now I am the disoriented one. License? Expired? “Give me your license.” I look. Your birthday is in late December. You remembered. Your license does expire- in ten and a half months. “No, look. You are ok.” Charlotte chimes in, despite pneumonia “You can still drive. It’s ok.” You look so upset. We all three know what just happened. We all hurt for you, for us, for what is coming.

We see the doctor today. “How are you?” What can we say… You start to say this isn’t working. You need help. You stop. I step in. The year. The road… the everything. The fear of being angry of showing me a new mood and new you we do not know. The plea for help. The helpless look on our doctor’s face. The recognition that whether this is Parkinson’s or Alzheimer’s or whatever, it has changed our world. Our future. Our us. So I step in- We can get back to Maui in December for half price. Her jump- do it. Now… before it’s too late.

Three Christmases Later: 12/25/12

The third Christmas. In 2010 I never imagined what this would be like. If I had, I would have been wrong. The grieving is an ongoing task, easier some days and weeks, so much harder at other times. And always it catches me off guard.

I was at the cemetery today, taking care of a Christmas tree for Kerry’s baby brother. As always, I wonder what kind of boy, and now young man, he would have been. What he would have brought into our world. I spent some moments with Linda, and freshened things up. And I caught myself being so angry that I am spending holidays with her in a cold cemetery making her grave pretty- as if she were there. I know she’s not. We shared a strong faith, and I saw her in the wonder of seeing others come back for her the week she was dying. She was absolutely certain of where she was going and who was waiting for her. But in the absence of Linda, her grave is what I have to visit. Then back in the car and back to the millions of errands needed to make Christmas happen at home for our kids. Put the sadness, the loss, the grief away. Time to get the to-do list done!

Three Christmases. All but one has graduated. Two are driving with licenses. All have opinions and attitude at times. Especially at the holidays, whether toward me or one of her sisters. At the cemetery I have my moments of being mad that I have been left to manage all of it. To make the three kids enjoy the days and to hide my sadness. To meet their expectations and to make sure the holidays are always the way they used to be as much as they can be. To not take personally the attitudes and the self centeredness that are the teen years and wishing they could, for once, see that I might have a need once in a while and offer some help without being asked.

It’s hard work being the surviving parent. Until you have been there, it’s really unimaginable. I lost my beloved dad, and I miss him terribly. I lost an incredibly special aunt, and that is still with me. My grandparents share a grave with Kerry’s brother. I send flowers to the family site in Florida every year for my dad’s parents and Aunt Pat. But none of that compares to the ongoing losses of your spouse and the parent of your kids. Those new drivers should have had Mama there to cheer. Those graduations should have had Mama there. The one coming in June will hurt most of all, because Linda begged her doctors to let her see Chloe walk across that stage in cap and gown. Every holiday is a chance to make it better, to get past the missing, to not focus on it for their sake. But it’s also my time to know how much Linda isn’t there with us. It hurts so very, very much. And it’s so tiring. The kids can’t know how much faster I get tired now from fending off demands and keeping things on target. Why can’t I stay out all night? Why can’t I do this, that, or the other thing???!! Because your mom is so sad sometimes and does not get to show it. So she doesn’t have the energy to explain it. She is doing the very best she can. Sometimes that really is all there is. There is only one of me. You can’t say that to kids, no matter how old they are. But I can think it…and then stop from reacting to it.

It’s Christmas. It was my favorite time of year. I’m trying to keep it there. To hear Linda’s laugh, and begging me to tell her what I got her. And begging for a bigger budget for stuff. And planning how to display the presents to make them smile when they wake up. That first Christmas with Kerry when she made sure the My Size Barbie had Kerry’s matching dress lying across Barbie’s arms as if it were an offering, in front of the play kitchen and with the new stocking from Mrs. Claus next to them. The next year when we had two girls and two My Size Barbies, and had to out-do the previous year. The first year we realized between the two of us that we were not promised any more Christmases, but could not tell anyone. The stress of the last Christmas together- I knew it in my heart, and so did Linda. But we never said it. It hurt too damn much. Now that reality is three years old. Casper does not remember little girl Christmases with the kids. Charity doesn’t share that history with us, and is missing her own birth family and especially her brother and grandmother. It’s time to stop the missing and the sadness and to focus on the new memories. And to find the energy to remember they are teens, and they aren’t going to think about much outside their own realm. And hope, for the third time, I can do it with a smile, make new memories, and keep those we miss present in our holidays. Because if we don’t the love we shared is diminished.

Acclimating to Dementia: 12/12/12

We rode together in the car today. Casper didn’t want to stay home alone again. I had to work, and it was a long day. Mid way I stopped home and she rode for the afternoon with me as I saw patients, waiting in the car as I went inside each home, before I was off and running into the night for more appointments. I don’t want to be gone so much, but things need to be paid for, and work pays the bills. And it’s Christmas after all. There is more that needs to be paid for.

The weather is gloomy. That’s never a good thing at our house, for anyone. Especially at Christmas. SADD is a part of our lives, and at the holidays the kids miss Linda, desperately. I do too. Casper misses her parents, and her brothers, and her aunt. I miss Dad. And Linda's parents. And some of you wonder why Hawaii is in the plans for long term? There is sun and there are rainbows there right now. Clouds last a few hours, not for the next seven days. At our house the losses are literally on our walls. I love family pictures, but now many of them are those we miss, not those we still see. My dad. Mari, Especially Linda. Casper’s family. We didn’t know them, but I know she misses them.
So today we were in the car. “Hon, how about you help me with the family dinner Sunday? How about we fry chicken and make pineapple upside down cake and hush puppies?” “No, I don’t think so.” “But you used to like to make that. Your sisters sent the recipes. It was yummy. Your coleslaw makes Chloe so happy.” “I don’t think I can.” “Why?” “I don’t know?” Huh? What? “Can you describe that so I can understand it?” “No, I just don’t think I can or want to.” “But why? You used to. We had fun…” “I don’t know. It’s not there anymore.” “Where did it go?” (Yeah, I am brilliant like that sometimes. And they licensed me to be a therapist. Who knew?) “I don’t know. I can’t find it in me anymore.”

And there it is. Dementia in all its ugly rawness. Casper simply isn’t her anymore. Last week there were two days where she was who she was. She smiled without thinking about it. She made a few jokes. She laughed. She remembered all of us and our activities. She pulled me close. And then, just as quickly, she was gone again. Replaced by the Casper who wants so much to connect, and who will act the part with others to make them feel she is still here. But in the car, on long drives, you can’t avoid the reality. It’s not fun to cook if you can’t remember cooking and might leave the stove on. It’s scary to be downstairs when there are candles burning because you are afraid they will burn the house down and you know you are the only one afraid. You wish, desperately, that instead of being outside in the car waiting on your partner you were in that house being the hospice nurse- especially when your partner is complaining about the actual nurse and knows if you were the nurse those complaints would not occur because you were a damn good nurse. Only now you can’t remember the meds your partner is discussing.
So when your Jill is trying to cajole you into cooking dinner, you agree to a family dinner out at the Spaghetti Factory so you do not have to admit you can’t remember the recipes. You do only part of the laundry because you can’t remember what goes in the dryer and what hangs dry- or else you hang dry everything just so you don’t make a mistake. And you wish your partner would quit working so much and come home earlier so you still feel important. Because you are. But sometimes, you can’t remember just how important. You can't remember how many times you have been told that today- you look at your phone and you don't see there are messages, or answer sometimes, because the phone you used to use all the time just does not make sense anymore.

Dementia may be stealing you sometimes. But not from me.

More adventures of a caregiver, who thought she was really just a wife:11/5/12

On our newest adventure to hospital land, we arrived early and found a delightful clerk in registration who remembered us (that means you have been there too often!) and didn’t miss a beat when she recognized us as a “we” and Casper as not being able to remember at least some information. Bonus points! Maybe today would be okay after all, I thought. Not great, when facing a spinal tap, but ok enough.

The nurse found us quickly and was great- no asking if I was Casper’s daughter (really- we are not that far apart, and with all of the drama I am catching up quickly!). She had already read the history- more points!- and knew what she was dealing with. She took us to get her changed, and simply assumed I would be there to help, stepping away for privacy. Wow, I thought, this is getting to be almost too good to be true. As she settled Casper into a bed she acknowledged the legal documents, and noted that I would be signing for her. Wow- not a single challenge. This is going to be easy…

And then…

“Let’s go over her history and symptoms.” Umm, let’s not. I have it all in writing. Meds too. I’m OCD like that. No discussion needed. Really. Bedside, with me on one side of the bed, and the nurse on the other, for forty five minutes. “How much memory loss? Short term or long term?” “Both? Oh, that’s bad.” (I know it, thanks. Casper didn’t. Until today.) “What is her diagnosis?” I have no idea. Neither does the doctor. That’s why we are here. “Have you considered things like (fill in your best guess.)” Yep. Been there. Done that. “What can she do?” Umm, step back or you might find out. She’s still got ears and she’s hearing this entire conversation. “Why does she have pain?” You try tremoring 24/7 and falling and tell me how comfy you might be. “I have to list her as nutritionally deficient with the rapid weight loss. You should try to feed her Ensure.” Have you ever tried Ensure? Did you hear me say she can’t always swallow? That would be a choking hazard. But thanks. “Honey, I have to put a Fall Risk band on you. Don’t get up. The rails will be up too.” Move quick- she’s still a nurse, and she has an opinion about being trapped anywhere. And she is definitely not "Honey."

None of the above is to say the questions didn’t have to be asked, or that the fall risk wasn’t real. I totally get that. But Casper is a person, like all patients, and having those conversations over her head like she’s not there is dehumanizing. After it was over, I leaned down and asked quietly how she was doing. There were tears in her eyes. She said she was ok. I apologized, and she said the answers were right. I asked if it hurt to hear them, All she could do was nod. We held hands for a while, and I stroked her head. She usually hates that kind of thing, and public displays of affection are not in her book. North Carolina beat that out of her. Today she needed it the whole time, and when my hand left hers she looked for me.

Then after a huge delay the radiology tech came for us. He didn’t introduce himself, or warn Casper that the bed was going to move. He didn’t ask who I was at that point. When we got to our destination (another holding bin for gurneys with patients who were people before they entered the hospital) he looked at me and said “Are you her caregiver?” How to answer that? “No, I’m her wife. And I’m staying with her.” He looked at me. “We’ll see about that.” Oh, you betcha we will. He shoved her bed into a wall, so Casper was facing a phone, without another word. No explanation of what was coming, no orienting to where we were. By now her meds had worn off, and the tremors were back with a vengeance. I went after him, and explained, outside of Casper’s earshot, that she could be easily confused, and her meds were gone and she would need more to take effect before the procedure. “I’ll have to ask the doctor. If he says no, we do it without them.” Oh hell no. Do you understand how many procedures she’s had? How little patience she has left with medical people who poke and prod and hurt her without results? Do you get she might not agree to more if this does not go well? I know you don’t care, but do you hear me? “The doc left anyway. He thought he was done. I have to find him.” Casper was ready to leave, in her hospital gown. The only good thing about dementia? You cannot easily escape the confusing warrens of hospital corridors.

Finally a doc shows up, but will not talk to me. He is much too important for that. The woman next to us was wailing, the guy with pneumonia was gurgling, the upset guy on the overflow gurney was starting to get mad but was madder for us because he knew how long we had been waiting and heard the medication discussion. He told the tech to go her Casper meds, and offered to send his wife for them. Go Team Patient!

Meds arrive, and they tried to move Casper before I could even open them for her and get her to take them. Wait! She’s been in a dark holding cell, with lots of noise, she’s scared, and you aren’t letting her get the meds she needs on board before the procedure! “The doc says now. He’s in charge.” Not if my body is in front of the gurney he’s not. I’m still a big girl. Meds down, and with Casper a little reassured, we went to the room. Big tough tech guy asked Casper to move herself onto the table. Umm- she’s shaking. She needs help. We got her moved. The doc finally decided he would see us. He put down his Starbucks cup (reason for delay noted) and gave her a 30 second list of side effects. “Understand?” Umm, she cannot process that quickly. She held onto me and asked only if he would wait till the meds were in. “I have to mark you. I can do this on less cooperative patients. I’ll get you fine.” Well, that’s reassuring. Only she is cooperative. The shaking isn’t on purpose. The confusion is real. She held onto me tighter. “You have to leave. Now.” Panic on her face. “They said…” “No, you leave.” How about I stay until she’s calm and you have the Betadine done? Then I can help her manage that. “Out.”

I kissed her and sat directly outside the door. Techie came by-“there is a waiting room. We’ll come get you when we are ready.” Nope, I will be right here. She needs me when it’s over. The minute the door opened Casper was looking and reaching out. I was right there. It had clearly been hard for her. Techie was apparently glad I really was sitting there. For the next three hours we sat in recovery where we started our day, and every time my hand moved Casper’s eyes went looking, even when asleep. She almost fell when we got home. That fall risk thing once again. It’s real, I get it.

I really do appreciate the kindnesses shown, and the caring moments. This is not sour grapes. But if you work with patients, please remember they are people. If they have signs of dementia, orient them. A lot. Don’t move them without warning. Don’t give the same rote fast explanations. Let them have a support person. Go out of your way to make it happen. I have known lots of patients. I cannot tell you how many simply stopped agreeing to medical care because of the way they were treated. They gave up. Don’t contribute to that by being in a hurry. And don’t talk over someone. Eyes being closed are sometimes a defense mechanism, not sleep. Those ears can still hear you asking those questions, and the pain they cause is just as real as physical pain. Probably more so.

Thanks for listening. The wife.

Life: 10/18/12

Rapidly progressive dementia of unknown origin. …such an innocuous name. No fancy disease to fight, no association to provide education. Labs and tests and more guesses, and more dementia. The hardest part is seeing Casper understand that she can’t remember, or even worse having to explain it to someone. I want to swoop in and rescue her. Sometimes I can’t, and it’s unbearable.

Today I was just trying to fix a phone issue with our wireless provider. The customer service person needed to verify Casper’s identity by phone. “Name?” “Casper.” “Full name.” “Casper.” “Full name please.” “Kathy…Kathy Casper.” “Date of birth?” Silence. “Date of birth???” “12/28.” “Date of birth. I need your date of birth.” “12/28…” I took the phone and provided the year. “Ma’am, I need YOU to provide the information!” Casper repeated it for her. “Password??” “I’m not sure.” “It is your password?” “Yes. I can’t remember. Honey, what’s the password?” I gave it to the representative. “Is there some reason SHE can’t give that information?” Yes, as a matter of fact there is. I wish I had a good name for it. Clearly she was struggling in that conversation. Why can’t you try a little kindness? I finally got the phone and left the room, and explained. Suddenly they were understanding. But why does Casper have to experience this over and over?

We go for walks some days, when the shakes are not so bad. Now I hold her arm not just to keep her upright, but to make sure she does not take a wrong turn, and so I don’t have to correct her verbally. Just a gentle tug and we are back on the correct route. Other days she knows she is confused, and calls for me to come get her. She will ride all day with me, sitting under a tree as I see patients. She knows her life as she knew it has been stolen by whatever this is, and she hates it. I am the one seeing patients. She wishes with all her might that she still could. She struggles for words and to remember friends’ names. Nursing information that used to be second nature isn’t there anymore. Her identity is slipping away bit by bit. Her confidence is as well. She used to be the protector. Now she is afraid at times. She gets lost in buildings, lost in our neighborhood, she can’t remember days or dates or events. She is sometimes afraid to call family because she will sound different to them. Last week she suddenly reverted to calling herself Kathy again. She laughed and said she didn’t know why. This week she could not remember how we are going to hyphenate our names. Then some beautiful days we have laughter and smiles and moments out where she can joke and relax. We both live for those moments.

Today I am waiting for her to sleep again, after that terrible phone call, before I can leave for work. The shaking is so bad she can’t hold her head up. She doesn’t like to be alone at those times until she sleeps. So I call families, make arrangements for other people’s lives, work on paperwork, waiting for sleep to come. And hope I get home before we find out where we are later today. Back to before? One can always hope.

Life Changes: 8/29/12

I never fail to be amazed at what people will think and actually say when discussing a situation about which they have no experience. And how perfectly comfortable they feel in sharing their thoughts without a hint of a filter. I’ll admit, sometimes I lack a filter- but it’s usually when facing a dirty house that forgot to have chores done, or a driver on a bad day in a bad week in a bad moon. It’s not usually making observations about another adult’s life or the pain they are experiencing. Maybe it’s the social worker in me, but I would like to think that is the way human nature should be. Kind of like the walking a mile in someone’s moccasins or sandals- wait until you can say you might have been there even a little bit.

I was so very blessed to have had Casper catch me in my grief when I lost Linda. No, the grief didn’t magically go away, and no, I was not in denial. But I was blessed to have a hand to hold and arms to surround me and eyes that smiled for me once again. Until you have watched the person you love more than the entire world slowly slip away, so that even talking is difficult and going for a walk means a wheelchair and oxygen, you can’t know what it means to lose someone bit by bit. When I let on that Casper and I were an “us” there was much criticism and talk. Her friends were worried about her. My friends were worried about me and the kids. We understood it and withstood it. Her friends are now our friends. Many of you attended our wedding, which was a day of so much joy for both of us. It was who we are as a couple- our music that we share, relaxed, informal, all about good food and good friends. And Hawaiian Shave Ice of course!

We thought we would have the rest of our lives to enjoy new adventures. We joined two families. I have sisters in law I love and who check on my. I have new nieces and great nieces and nephews, and a brother in law. I am blessed. Casper got my crew. Mom loves her, and she has managed to learn who most of the rest of you are. Casper has learned to smile at our niece swimming in her mermaid tail in the pool and to listen with eagerness to Natalie, which at times can be a lot to listen to. She’s helped get two through school, one into her senior year, and kept me on track as a mom while we fought for sobriety for one. She took wild calls from mom when she was in the hospital and making no sense whatsoever, and calmed her down. Gail and I were on the floor laughing, while Casper kept her senses and simply listened. It gave us the break we needed right at that point. Casper and I thought we would have so much more time when the schooling was done and the careers were winding down.

I remember one day Linda called me while I was at work. It was about two months before she died. She and I talked, and I promised to be home as soon as I could. She said she loved me, and she would like to see me when I could “find the time.” I was so busy trying to guard my time for when she really got sick that I missed that time. She was only really sick for a week. I promised myself I would never do that again if this ever happened again. I have talked with other widows my age, and they had the same experience. You work to save time, and then suddenly you have too much time and no loved one to share it with because you guessed wrong. And there are not rockers on the front porch to watch grandkids because some stupid disease got there first. And here we are again.

Parkinson’s Disease. It could be worse- it could be ALS, or even Myasthenia Gravis. All those symptoms. All those tests. And three neurologists who denied there was anything seriously wrong and told me to allow the big experts to tell me there was nothing really wrong. Who were we to say they were not listening? Yeah. Two years later, and now beyond much of the treatment. We finally have a doctor who seems to care, but we have a disease that is going to win eventually. It’s so far advanced already. Do not start inundating me with hopeful ditties and cures. Been there. Done that. We know this disease. We are fighting the good fight. But we have seen it so many times, and we know the odds. And yes, we are talking about them. Poor Casper- she’s married to a social worker. She’s going to talk whether she wants to or not!

So here’s the thing. Casper does not smile because she can’t. PD takes that away. It doesn’t mean she’s unhappy or mean. She simply can’t make the muscles work most of the time. She talks in hushed tones because it’s taken her voice. She moves slowly because her muscles can’t go faster. She falls. A lot. She may not recognize you. That means when you see her you remind her who you are. Me- she won’t forget. The rest of you- remind her. If she says she will do something, call me. She may not remember. (I may not either, but I don’t have an excuse). She won’t want to eat in front of most folks. That’s because she has trouble swallowing. If she seems sleepy, it may not be that you are boring. She sleeps a lot. If you come over and she doesn’t come downstairs, it’s because she can’t do it safely right at that moment. Feel free to socialize upstairs. You can even hold the rabbit. Petersnoot is lonely. If you go somewhere with her, please keep an eye on her. She went over sideways at a store tonight with no warning, and she can’t catch herself when she falls or leans. She is still very butch, however, so do not hover.

Here’s the other thing. Karma did not make Linda sick or Casper sick. My karma did not make them sick either. I have no important lessons to learn from this from a bad prior life. I promise. I am sure I was naughty in previous trips, but not enough to warrant this. I get the life isn’t fair thing, and I am all done with that one. I actually think some of you who are living without drama owe me a thank you, because I am absorbing your share of drama too. You are welcome. Please no more helpful noises that I should have been more careful. I was careful. I gave my heart to Linda, and she helped me pass it to Casper. I could not be more blessed to come home to her blue eyes, and what is left of her smile. I could not be luckier to know she worries when I work late and that she uses every bit of her energy to stay awake to make sure I am on my way home and in the door safely. I wake up with a hand to hold. A shaky one, but if I hold tightly enough it can make it still for a bit. This sudden and awful challenge was not caused as a cosmic payback. It’s just what happens in life. It’s not fair. And I am not sorry we took this chance together.