We Won? We Can Get Married?

Yesterday was such an exciting, invigorating, relief of a day- we (I) got up early to watch the Supreme Court hand down their decisions on Prop 8 and DOMA. We have been waiting for months, and years, for those decisions. If they went badly we would never be married in our lifetime. It takes the Supreme Court and average of 50 years to reverse itself on decisions. We do not have an extra fifty years at this point...

Then we saw interns running down the steps of the Court, and heard screams- of joy. This one was ours! Casper woke up, and smiled- really, truly smiled. No matter how hard things are, when you find out you have just gained the rights of everybody else, it matters. I read the news as it poured out of DC, and waited for the final decision on Prop 8. I woke Casper up again. Twenty minutes before she knew what was occurring. Now- no recollection at all. "Did we win?"

Yes- we won! We could get married! Another big smile. It doesn't matter how bad things get- when you can marry the person you love, it's a good day. And maybe even better when you have dementia, because the previous not-really-a-wedding is not quite in the memory any longer. Then- a glimmer- "Are we having shave ice again?"

We were married in heart but not legally in California in 2011. That mattered because we have kids. They needed to see we were forming a solid family following the death of my first wife, Linda. We needed the kids to see it and feel it, and so did we. We had fun that day: BBQ, Hawaiian Shave Ice, Ben and Jerry's sundaes, cupcakes with milk,  a jump house, lots of friends, and so much love. Then we were "Civil Unioned" in Hawaii this year. Romantic, on the beach, turtles and whales below us. Totally our style. But that is not enough of a marriage to meet the new standards for the fall of DOMA...so now it's time for wedding number three. I will soon be able to say I have been married six times to two women, and I was never divorced. I believe that shatters Elizabeth Taylor's record. Linda would be the one to ask about that. My timing is off.

Linda and I were married in a ceremony in our church in our first year together. Then in 2004 we were married in San Francisco along with our best friends in a wedding with three couples and six children. Weeks later the California Supreme Court annulled us. Then in 2008 we made it legal, forever, joining 18,000 other couples at the alter in a brief window before Prop 8 passed. We chose what would be the hottest day of the year, in our big, beautiful antique church, with no air conditioning.  It was joyous, packed, and we made our vows with our best friends and our children. We celebrated into the night- until Linda could not breathe. That was the beginning of the end for us, but one of the best days of our lives. We knew that day she was dying, but we vowed to make it a celebration of our love. Her smiling picture from that day was the one we used at her memorial service. You can see the love in her eyes. As much as that was a legal marriage, after her death the Federal government told me repeatedly that we were married in our state but not our country. Huh? No Federal benefits. Prove you are survivors for filing taxes, no VA benefits... the list of insults and idiocy went on and on and on.

Then yesterday happened. And suddenly DOMA is dead. I am suddenly a legal widow and a fiance in the same moment. I am not sure how that plays out... but we'll run with it. And suddenly we can get married. Really, truly married. And Casper can't remember most of it. She can remember one very important thing- that she loves me and wants to marry me. (okay, and one other things- she wants to lose weight before a wedding). So we head downtown for a celebration we helped to plan. On the way there...

"So what did the Court do?" "What does it mean?" I can see the struggle. She wants so much to remember. And to be able to process the information. We go over it a few times. When we get to our church where we are setting up outside, she is still not sure, but she knows there is stuff to be done. That she can do. She gets the rainbows and wedding bells out, she sets to work with the kids, she greets a few members she can remember. Now church seems like home to her too. We set a chair up so she can watch but not be involved if needed. Then...

"I'm going to get dinner." What? "This lady is new. She needs to eat. We'll be right back." What? Suddenly I wish I had installed the secret gps tracker in her shoes. Too late. She's disappeared. An hour later she's back. "Did you eat?" Sheepish eyes..."No, I had ice cream." What? Did the new friend eat? "I think so. I found ice cream." What is her name? "I don't know. But I found ice cream."

One of the most important days in my life..."I found ice cream."  But the look- "I love you. I am afraid. I am glad I got back here to you." Casper settles in and we celebrate. My shy Casper picks up her sign and meets me on a corner to greet motorists. My Casper waves and greets people. I am stunned. "We can get married now?" Oh yes, we can.

Dementia and Parkinson's rob you of so much. Your memories. Your ability to think things through. Your career. Sometimes who you are. But it can't take the love you feel  and see in the eyes of your partner.

It can't take the person you love. It can't steal the magic of who you are as a couple. And it will not steal our newest wedding. Casper and I have only had two. We have to have one more to call it equal. And to be legal. Once and for all. Forever.

Christmas... I love Christmas. And I love Christmas weddings... and Casper. 

Sleeping is overrated

This is night 3 without sleep. Casper has had ongoing Rapid Eye Movement Sleep Disorder and Rapid Eye Movement Sleep Behavioral Disorder. Those are lots of words for "watch out- I may hit you and not know it, I will be talking and nightmaring and not know it, and there will be no sleep in this bedroom tonight even if my eyes are closed."

I called our neurologist today. He already knew I had diagnosed this in Casper. I did so by watching videos on YouTube. How else does one get a diagnosis these days? When I called today and told Sandy, his nurse, that I was using pillows to protect myself, and that I was driving but not sure I should be, she emailed our doc. A few hours later we had a new med. Klonipin. Side effect- sleepiness. But wait- side effect- insomnia. What???

So I ran across the county today to get it filled. I brought it home. I prayed. And an hour after bedtime I got Casper the prior sleep med, because she was still wide awake. This is what the PD websites say:

"Sleep problems may be an early sign of Parkinson’s disease, even before motor symptoms have begun. Some of the common sleep problems for Parkinson’s patients include:

• Insomnia
• Excessive daytime sleepiness
• Nightmares
• Sleep attacks (a sudden involuntary episode of sleep)
• REM sleep behavior disorder (acting out dreams during sleep)
• Periodic leg movement disorder (PLMD)
• Restless legs syndrome (RLS)
• Sleep apnea
• Nocturia (frequent nighttime urination) "

Doesn't that sound fun? (From the National Sleep Foundation website.) Casper cannot sleep. Last night she had such vivid dreams they were real when she awakened. I have bruises. These are the suggestions:

• "Keep a regular sleep schedule, going to bed and getting up at the same time each day.
• Take sedating medication late enough in the day so that you don’t get an increase in symptoms as you are trying to sleep.
• Use satin sheets and pajamas to help with getting in and out of bed.
• Minimize beverages before bedtime to help avoid nocturia (frequent nighttime urination).
• Get exercise and exposure to light early in the day. "

Those would be great- except PD causes excessive sweating. Satin? Not so much. A regular schedule? Casper can't tell what day it is, what time it is, where she is. No matter how many times you say it, it changes ten minutes later. Meds for sedation? Cool. Except they do not work. And benadryl is not allowed. The reality? Nothing works, and we are so sorry. Today's call included a reminder that the new meds would cause increased confusion and falls, and a suggestion that I not fall asleep. Then a chuckle that confusion was already here. so that would not be new. It was not said unkindly. It was an acknowledgement that we have apparently officially entered the "life sucks" stage of this ugly disease.

And so tonight we talked again. Casper was tearful that I am now working three jobs to keep this place going (and to really enjoy my career), and that she cannot work. It included her worries that she might be irrelevant. It included my response that her arms around me made this all worthwhile, and a reminder that all of our close friends are actually currently facing life changing realities of their own from illness. And it included a serious discussion of the things we might change (more walks on the beach, more time in the pool, better nutrition) and those we can't. It included a reminder from me to her that Linda was her age when she died- and that I never, ever considered doing anything for Linda other than loving her gently out of this world. And a brief suggestion that Casper might consider more time with me and a dip past the baptismal font at church. That went... nowhere.

So tonight the new meds are not working. Old ones have been added back for our sanity. I have an early morning tomorrow with Chloe and work. And this weekend we will be headed to Laguna. Because quality time does matter. Way more than meds.

Caregivers: we are so not saints.

I knew today would be a bad day. In Casper parlance, it was going to be "One of them days." How did I know it? Yesterday was a good, but very, very, very long day. In Parkinson's Land a long day usually means a bad day to follow.

 

We left for graduation at 3:30 for a 6pm event. If it were up to her, we would have left at 3.

Parkinson's in known for lots of things, but especially anxiety reactions. In our house it comes out as leaving for everything early. I have become an expert at making it not so early so we don't arrive a day early. I tried moving the clock, but the stupid thing is smarter than I am and resets to real time. I am appalled- I need an early clock to make it to work on time, and it won't let me make it run late.  I am considering making it run on Hawaii time just to normalize things.

 

So we arrive early, and we get to the handicapped section. My mom, as usual, is late. Casper is anxious. I finally send her ahead because I can see where she is going. I alert the kids to make sure she does not go further. When my mom finally arrives thirty minutes later we are all reunited in the special cage for the handicapped. As we walk in, one woman challenges us. She has decided she is the authority on who is handicapped. I can see what's coming. "Why are there FOUR of you? They told us no more than two!" (This section has a phenomenal view of the graduates. For me that was a nice surprise. We were there in that section because there was no way we were going to get up stadium steps safely.) "Who is handicapped?????" Now, in this section you have to preregister. The staff at the school know the diagnosis. Everyone there is pre-cleared. But now we have a self-appointed expert. She has X-Ray vision and can tell we do not belong. I work to make myself realize that being arrested will not be an asset to this evening.

 

"We have been cleared." Hoping that will shut her majesty up.

 

"I said, who else is handicapped. Else you can go in the stands."

 

Okay, it's on. "My husband has to use this chair. We have a right to be here." Goodie for you. He has some invisible handicap that is manifested in a wheelchair. How cool is that? We just have Parkinson's and Lewy Bodies growing in Casper's brain. You win- your husband is more handicapped. We have a Rollator in the car, and Casper should be using it, but she's not. That makes your spouse more handicapped. Awesome.

 

"We have 2 handicapped folks. That equals four people. Pretty simple, isn't it?" I smile while I want to reach out and touch someone. Casper has stopped listening. I am grateful.

She harrumphs, and pushes chairs around so nobody can sit in front of them but they take the seating for approximately 7 people. My mom, in her walker, is trying to make space for new arrivals, and Casper is trying to make space as well. our next door neighbor blocks them all.

After more than four hours of sitting, many tears, and the final cap throw, we head out to dinner, and finally get home at 10pm. That would be two full hours after Casper's bedtime. She can't even remember what meds to take in her med organizer. Chloe is oblivious. I am amazed that not once do I hear Casper ask to go home. She's so tired she can't eat her dinner, but admires Chloe's sushi anyway. You would never have known she hates fish. I help steady her to get in her pajamas. She can barely stand getting into bed.

 

So today she was in bed all day. She shook all day- head to toe, unable to walk normally. Unable to use her phone. And I could not get home from work because of drama created by an insurance company. I had to work late, then go to a neighborhood meeting. By the time I get home it's after 9pm. Casper is still shaking. She can't hold her cup. She can't remember her meds. She is afraid of what tomorrow holds. She so does not want to keep having days like this. She's afraid she will become too great a burden and I will abandon her, like so many other hospice patients we have both seen, Her hand closes around mine and squeezes like I have never felt before. I get it. We talk, although her words slur and she can't organize her thoughts.

 

I promise I will never ever leave her.  She still looks afraid. There are so many people who are abandoned when they get sick. There are caregivers who used to be spouses and lovers and the love of someone's life who now have to wear multiple hats, and sometimes get stuck in the frustration of it all. It's hard sometimes- you remember the person who used to be, and sometimes still see them. But then you need to make sure they don't fall, or don't drive, or take their meds, and suddenly you are their caregiver and disciplinarian and parent figure. Then you are back to being a spouse, but so very tired and wanting them to be able to manage what they used to, and frustrated at how much both your lives have changed. It's a rollercoaster of expectations, and emotions, and energy demands, and hope and disappointment.

 

This is not what any caregiver spouse expected or signed up for. But those of us who mean those vows would never consider leaving. That's not an option. This is also not what our spouses wanted for their lives. They wanted to be busy, vital, active people. They wanted to support their families. They wanted walks on the beach and dancing and romance and long talks. But suddenly with Parkinson's they can't even walk without hesitation. They can't hold a cup. They can't remember things, like how to use a phone or a credit card. They feel useless and stupid, and they want their old life back. Then they hear well meaning people questioning whether they are really sick, or telling their spouse what a saint they are. This isn't sainthood. This is commitment, and love. I don't know any caregiver spouse who does not get tired and frustrated at times. I also don't know a single patient I have ever been around who wasn't angry at some point and didn't feel incredibly useless as diseases took hold. I've never met a patient who was willing to use a wheelchair the first time, or oxygen, or anything that made them"sicker" or more obvious.

 

As every caregiver spouse and patient spouse adjusts to their new additional roles, we have to remember what our previous roles were. Rekindle the feelings when we can. Not expect too much when it's not possible. In Parkinson's there is a particularly cruel component when your loved one's smile disappears. You look at them and they have the look in their eyes you remember, but there is no smile. I keep pictures around of Casper when she could smile, and I paste that thought in my head when I see those eyes, so the magic is there. Getting frustrated with her won't help, it will hurt her. My role is to carry the memory, so she's the reflection of that when she looks at me. My role when people are stupid about her disease is to protect her from the ugliness. My role when I get home at night is not to make her feel bad that she can't work. I've learned not to say anything like "Aren't you glad you don't have to deal with this?" Because she really would love to be at work. And our role is to keep the magic above it all. It's the same to me as people who tell adopted children that they are "lucky" to have the parents they do, or lucky to be adopted. My kids lost their birth families in that process (although we have gotten some of them back), They did not ask for the early stories that were their lives. They fell into it, and had to survive. And while I am blessed to be their mom, they are like any other child- they deserved a safe family. Those who face an illness that takes away part of their life, their abilities, who they were,... they are not "lucky" to have a spouse or a child or a family member to stand by them. They should have that. We all should. Being lucky in that implies that the caregiver really might at any point choose to walk away.

 

Caregivers are not saints. We are not special. We are loving spouses who have really discovered that in faith, hope, and love the greatest of those is love.

 

Graduation Day

In only a few short hours we will be in the stands at RCC waiting for the sounds of "Pomp and Circumstance" to fill the air, watching a sea of blue gowned graduates of John W. North High School as they file in to receive their diplomas. Somewhere in that group will be our youngest child, Chloe. And somewhere watching from above will be Linda, who wanted more than life itself to see her baby graduate.

 

Every time we saw any doctor, any ER, anyone who was involved in her fight against pulmonary fibrosis Linda would beg them to find a way to let her see Chloe graduate. It got to the point that I had to step away. I knew she could not last that long. I saw the illness advancing in its ugly insidious way. But that didn't matter to Linda. Chloe was her baby. She wanted to be there. She was in the front row for kindergarten graduation. Missing high school was not an option. It even went on the bucket list. That damnable list of things I needed to do after she died. I am still not done. And in a way, I am grateful. Because still working in it means Linda is still an active part of our lives. Especially mine.

 

We fought for Chloe's education. We tried every school system, every option. We went to meetings. We sent her to private schools, charter schools. We did it all. We wanted her to be able to fly when the time came. I've kept it up since Linda's death. Up to this week we have waited on one teacher for a grade to signal graduation is happening. I've gone to bed and to the cemetery talking to Linda about how much this has taken.

 

Then I look at Chloe. And I am stunned. Thirteen years ago she was an awkward five year old joining our family. She met Kerry for the first time wearing Kerry's princess crown. The entire elementary school new that Kerry was getting a sister that day, and that Trevor and Kelsey were getting a cousin. Now she is a beautiful, smart, talented young adult. She has an edge that works for her.  She has a plan. (yes, it keeps changing, but she's 17. Any plan is a good thing. It signals ambition.). Our little princess who used to play in the dirt with her toy dump truck is now afraid of spiders and can look 25 if she wants to. Our child who never met the family before placement and memorized the extended family is now planning another road trip with the grandma she also helps with shopping at Costco. And the child who lost the Mama she loved most in this world is graduating tomorrow without Mama in the stands.  

 

She will have her tribe there. Her village. Grandma, me, Casper, Kerry, Charity, Katrina, Kelly, Jeremy, Cody,  Jackson, Vanessa, and the newest member Hayley. Kelley is also graduating. The bff's have finished together. But Mama will not be there to grab her afterward. Boyfriends are great, but they are not Mama. Every major life event will forevermore be tinged with the absence of Linda. For all of us. Each of us will try to play part of that role, but nobody can be Peter Pan. Nobody can say "Nubbins" like Linda. And none of us can make that hole better or less empty.

 

So when the orchestra starts to play at 6pm my Kleenex will be ready. And I will know Linda is there. Because she would never, ever, in a million years, miss her Nubbins' graduation. And I will make sure Chloe knows it. We will celebrate Chloe afterward, and we will make Linda a part of it. Because just because someone died does not mean they are not still there, and a part of those life changing  moments in our lives.

Chloe and Linda on Mama's Spyder motorcycle.

"I can't do this if it's going to be like this."

A week or so ago I read a blog from a member of the Parkinson's support group we sometimes attend. It talked about how much PD turns your world upside down when you are not ready for such a life event. I appreciated the author's candid approach, and then thought about it again as this week has stretched into one of the longest yet in the crazy adventure with this lousy disease. I try to get us to the support group more often, but Casper is still trying not to accept that the world has been turned upside down by PD. She would prefer some unknown disease that does not have the outcome this one does. As a matter of fact, so would I. Especially this week.

Parkinson's can mosey slowly down a path that is not well defined, it can arrest itself mid-stream, it can respond to meds.  It can never ever touch dementia. It can, and does, allow folks to keep working in their chosen career. Or it can do what Casper's has done- it can rock and roll into your life, make you quit work in the prime of your career, stop your retirement savings plans, and create havoc in your medical costs and the plans we all make so carefully as we creep into our fifties and beyond.  PD likes to strike in the middle of the good years- the times when you have finally got the career where you want it, where extra education is an option, vacations are finally not camping, and kids are getting ready to launch. Just as you think there is a bright light waiting at the end of that tunnel, you find out it is a different light, a different tunnel, and that you want to dig in your heels and not go anywhere near that light.

This is our youngest child's last full week of high school. I've tried to be as available as possible to do school pick ups, take care of extras so she can enjoy the week, and to not let the PD stuff invade. This week was on Linda's bucket list, and it really matters to me that it goes right for Chloe. I know she's missing Mama Linda, and that there are gaps I need to fill. And then in the middle of all that, we are facing a new and more terrible side of PD: Rapid Eye Movement Sleep Disorder, and Rapid Eye Movement Behavioral Sleep Disorder. Such a big description. I'm having trouble typing it as sleepy as I am. What does it mean? Those who are lucky enough to be in the tiny fraction of PD patients with Lewy Body Dementia may also be in a tinier fraction of those with REM disorders. Think of 5% of 5%. That, of course, would be us. Each day, and night, is just a little more crazy, and Casper's eyes flutter, eyebrows raise wildly, eyes open at half mast while her eyes flutter back into her skull and come back down, twisting from side to side. Think of Mr. Toad's Wild Ride all displayed by the eyes. Then add movement. Not coordinated- wild, out of control, grasping the sheets, smacking pillows, hitting, trying to get up while unsteady and asleep. And think of that happening in five minute bursts that occur maybe every fifteen minutes, accompanied by vivid dreams that seem real, sleep talking, sleep walking, and seeing people who used to be here but may have died long ago.

Then try to explain all that without sounding absolutely nuts, and to admit your mom was with you all night- when you know she wasn't. How do you do that? How do you explain it? Fortunately, I am not the wigging out type- most of the time. I am the type who goes online and researches what is occurring. I was watching videos of this as it was happening here today, so I could be sure of what I was seeing. I read what the research said to do, located the meds, and woke Casper up enough to get them into her. Even with all of that, the dreams and sleep continued. It took until 9PM for her to come to enough to talk about it and to do some education about it. That's when she said she could not do this in the long term if this was how it was going to be. "I can't do it. I just can't."

I get it. I can barely do this some days, and I'm not the one jumping, twitching, and sore from all of it. I'm not the one who had to quit a career I worked so hard for to stay home and feel useless all day. I'm not the one having dreams that I know make no sense, but that took so much energy to deal with in my sleep and seemed so real even as I woke up. I can't imagine how hard it is. Casper rarely knows what day it is, what date it is, or even what year it is. She can't tell if she slept an hour or two days. Yesterday she slept through dinner. Today she thought it was day when it was night. Not even darkness is a cue any longer. In that space, who would want to keep going knowing that was what was waiting? We've shared hospice patients with the diagnosis "paralysis agitans." Fancy medspeak for PD, end stage. Those are the patients who are vegetative. They have seizures, they are fed a pureed diet, they exist in padded beds in diapers. Those with loving care last a long, long time. All of us have said, quietly, to our other staff, not to ever let our lives come to that. Casper can't remember many hospice patients, but those she can. One in particular.

Saturday we see one of her doctors. We will be addressing this new adventure, and will will try to get the right meds again to calm this down. I can hope. But then again, this is Casper. Our doctor keeps saying "If it were simple, it wouldn't be Casper." I will keep trying to teach her. She does not want to hear it, and she can't retain information anyway. But she needs to understand if she can. And we need to keep hope- because giving up and giving in is not an option.