When past and present join

One of the clearest memories of the day Linda died  from pulmonary fibrosis occurred sometime mid-morning. At 6am Linda was telling us movie trivia (a specialty. I really miss all the quirky facts she stored. I should have listened better!). She'd only been in a hospital bed for a week. Before that she was up and moving. Not well- but moving. Determined. Then shazam! 7 days and she was dying.

She'd gone from eating 7 days before (not to mention playing, and cheating at, poker), to not eating, a catheter, bed baths, bed bound... then came Friday. Good Friday, actually. At about 10am she stopped responding at all. Not even to me. Her eyes no longer responded. Casper put her arm around my shoulders, carefully, and quietly said "You can turn the oxygen off now. It's not helping her anymore. And she hated that mask."

I knew Linda was dying. We'd talked about it all week. I knew the clinical signs. But... turn off the O2? Two days before we had to take off her wedding rings as her heart failed and her body swelled. That was painful to watch and absorb. Who thinks about those moments in life? But the oxygen? That was her lifeline.

And yet... it made sense. She had almost no blood pressure. She had said her goodbyes. She couldn't absorb it anyway. And she really did hate that mask. Nobody likes running O2 anyway. Masks remove you from the world around you. They stifle you even as they flood you with air. They make your face sweat (did you know that?) and your nose dry out, not to mention your mouth. Nobody can hear you talk either.

But turn it off? And so I did. And I watched. No reaction. Just my own. There was an odd silence even in a house filled with people and kids and pool sounds. We'd had an oxygen concentrator running for years. We'd dragged tanks everywhere we went. The last trip to Las Vegas the year before we had so many tanks I was afraid we would blow up if a truck hit us on the Baker Grade. And then suddenly- silence. The concentrator was off. Forever. Two hours later Linda died in my arms. Peacefully.

Yesterday the oxygen concentrator came out to be used for the first time for Casper. It was delivered when she was placed on hospice service, but that was only a month ago. I was relatively sure it would be a while before it actually had to go to work. I stuck it on our closet (closets are for clothes, O2 concentrators, blankets, shower chairs when not in use, dog dress up outfits.... not for people. If I ever trip and fall in ours I will never be seen again.)

And then Casper started breathing differently. I was up all night. I hate apnea episodes. I have asthma, and it makes me feel short of breath to watch apnea. I can't stand it. Gurgling? So not okay. But Parkinson's makes your brain forget to swallow, and fluid builds up on your vocal chords. Atropine makes it go away, but now I have to skinny out of bed because our bed is shoved against a wall to make room for the hospital bed that came yesterday. And Jill "skinnying" is quite a feat. My Girlfriends who do Ironman tricks for fun could do it without thinking. Me- not so much. Then there's the candle on the wall- skinny then duck then wrap around the bed post and don't stub your toe at 3am. So much for sleep.

The next day- was that only yesterday?- I was in Hemet, an hour away on a good day. The phone rang when I was five minutes away from a patient's home to meet a nurse for an appointment we'd waited to do together for two weeks. Jay called. Casper was not breathing well. The car and I pulled a U turn somewhere mildly illegal and I called our nurse, using my access to her cell number work for me while destroying her afternoon schedule. I hoped she wasn't cursing that she was Casper's nurse under her breath and thinking I was going to be a problem child.

"I'm not sure what's wrong. Can you come? Please?" I called the nurse I was supposed to meet. "Can you forgive me? I'll make it up to you. Promise." By the time I got home Casper's nurse was on the bed checking her, and the abandoned nurse had called back and offered to drive from Hemet to Riverside at the end of her long day to offer support. You know what's awesome about hospice? The nurses. The other support staff. They care.

And so it was that Casper had sounds that didn't belong in her lungs that come from too much inactivity and that are often a part of end stage Parkinson's and Lewy Body Disease. It was that she needed oxygen for some support, and a nebulizer, and better support- that she refused, adamantly- in bed. And that last night she was disoriented, confused and angry, and today was was as well all day. And that she is now using the oxygen she hated this morning as I type at 8PM. And so it is that, once again, an O2 concentrator is humming in this bedroom. And that memories of not long ago have joined with today. Only this time I don't have Casper the nurse helping me keep it together. I have Casper my wife wanting to hold my hand as we cope as best we can when she know what's going on. And, once again, Fuzzy is in the middle of it. Just like before.

The Wedding Dress. With love from Casper to her princess.

In the weeks leading up to our very mobile and much moved wedding, I referred to my dress as "the snowgoose." It was way more dress than I ever thought I would or should wear, and I wore it for one reason only. I've told this story to a few people, and after thinking about it I think it needs to be known. Call it "why Jill would ever consider being a snowgoose."

Casper and I were joined as a family in 2011, in a full service that had no legal standing. At that time marriage was illegal for us in our home state. What was important to us was being seen as a family with the kids, and with them involved. In January, 2013, we were joined in a simple Civil Union in Hawaii. That made us "legal" and took place by the ocean, the one place Casper is ever totally at peace. We had whales not far from shore and Honus onshore. There was a double rainbow overhead. It was intimate and loving and totally an expression of "us"

Then the Supreme Court, unexpectedly and delightfully and amazingly came through for us. The day before Chloe turned 18 we were able to celebrate that marriage was, forevermore, legal for all of us in California. We planned a Christmas wedding. No rush, the church would be decorated and festive, we could keep it simple.

Then came the sudden downhill slide of Casper's Lewy Body disease. In June a December wedding seemed reasonable. Casper and I went to the mall to pull ideas together. I thought we were looking for a Christmasy looking vest or sweater for her, and something like that for me. As were were (barely) making it to the second store, and she was getting winded (for the first time ever), and exhausted, and gray, we sat. She, of course, refused to use a wheelchair or walker in public. People might think she was sick! That's when she said "I need to wear a tux."

What?
Where did simple go?

"I need my family here."
Uh oh. Dollar signs flashed, and I banished them.

Why a tux? "Because you want me in one. And you will have a dress. Let's look for one."

Umm, us? A dress? We did that before. Let's keep it simple.
"No. This is the last time. This one counts. We're doing this right."

We bought rings that day. The saleswoman watched Casper intently, then Casper sat in the waiting area while I finished the arrangements. The saleswoman asked it she could ask a question that was personal. "Does Casper have Lewy Bodies? She acts like my dad." We had a heart to heart. The long process of diagnosis. The heartbreak of there being no hope of recovery. The loss of dignity, the loss of memory. The feeling of just too much loss that will not stop. The need to make this wedding matter.

The next week, when Casper finally felt good again for a few hours, we went to the bridal store, where I showed her what i thought was my dress. Ivory. Lace. Understated. Elegant. Fit for a bride about to be fifty years old. Casper sat in a chair and looked. Finally she said "It's all right."

Shannon, the saleswoman, who knew our story and had taken an immediate liking to Casper, picked it up. "Casper, come with me. Show me what you see Jill in as your bride." Uh oh...

She took Casper's arm, steadying her as she started to fall sideways into an anorexic mannequin whose beading weighed more than she did. Five minutes later they were back. Shannon needed help from another salesgirl. There was too much lace, too much tulle, for her arms. I gulped.

"Jill, come on in here. You are going to be Casper's bride. Now let's make it happen." Three layers of undergarments. Then tulle. And more tulle. And crinoline underneath. Gone were the lace sleeves. Gone was ivory. I was in a white, beaded tulle creation that was three feet wider than I was. Shannon held her fingers to her lips. The universal sign for "hush." Casper told her at the racks that I was everything to her. And she saw me as her princess.

I walked out. My Casper, who cannot smile without forcing herself to because of this disease, smiled. Ear to ear. Tears in her eyes. Then a nod. "Now that's the dress. That's what I want to see you when you come down that aisle."

My head was all about I am too old for this thing. My heart was all about Casper. And the dress was ordered. By the time of the wedding it had a headpiece and gloves added by my friend Terry "for a little rebellion."

 

We found the tux Casper liked. We bought it. Casper, who worries about money constantly since she got sick, didn't bat an eye. Because this was for our wedding. Red tie, red vest. We moved the wedding up. Twice. Our doctor warned us she might not be walking in November. Red became a fall color, and we made it work.

On October 12th, when I peeked out and saw Casper waiting to enter the church ahead of the girls and the flower tots,  I saw that smile. She had to be held up by her brother and sister. She was not feeling good. But she was smiling. And when I walked down to her, the look was priceless. The day was magic. We had two of the best hours we'd had in months. And it mattered.

Things Not To Say To Grieving People

As a hospice social worker, a therapist, and a survivor in the grief process, I've had the opportunity to see, hear and experience what folks say when someone dies. I recently put a brief handout together after doing an intervention for a company that suffered a serious loss and was supporting its employees in coping with it.

 

I decided to add this to the blog, with some additions, after sitting in church today and being reminded of the story of Job. Poor Job, of the many misfortunes and losses. Job who was told that losses are caused by your own sin. I'm voting with our minister, Jane Quandt: your personal grief and loss is not something you generate with your choices. To me that feels much like we are on a Monopoly board and God gets to choose where we land. In terms of sheer numbers there are just too many of us for that kind of personal assignment of pain.

 

So here it is. This is not a universal list. It will never cover everything. It might even offend a few of you who have said these things with all the best intentions. Use it if you can, share if you think it might help, dump it if it offends or you know better. I have to say though- sometimes I need to be reminded, and I do this for a living.

• Simply saying “I’m so sorry” goes a long way
• Telling someone to get rid of clothes or significant items is not yours to do. This is their loss- they get to choose. When you have a loss it will be your turn to decide.
• Criticizing the memorial service is absolutely forbidden. You do realize the person putting it together is barely thinking, not sleeping, and feels like they have cotton batting wrapped around their head, don't you? This is not a kid's birthday party they didn't plan well enough. This is the memorial to the person they loved. Did they forget to acknowledge someone? Probably. Does it matter? Not even one tiny little bit. If you can't say something nice, say it was a beautiful and loving tribute. Because for them it was.
• Was the service a religion you are not familiar with and not comforting to you as a result? Possibly. Do they need to know that? Or hear you talking about it? Mom knows best- if you can't say something nice- don't say anything!
• Remember the loss will impact more at holidays. Say so. Send a card that acknowledges that. It's hard to get all those cards from happy families when you are devastated and to see the only comment  on the cards arriving is "Happy Holidays." Chances are it will be more like "These are the most challenging holidays I've ever had and I'm trying to keep it normal when it will never be again and nobody gets it and  I'm exhausted trying I can't say it because I don't want to be a downer and ruin your holidays." Try putting that on a card!
• If there are kids- please don't say things like "You are the man/woman of the family now." or "You are so lucky your mommy/daddy/grandma/grandpa is watching you from heaven now." A.) That's creepy to kids sometimes (how do you go potty with an angel watching?). B.) They would really rather have them here, and they are kids, not adults. That "man of the family" thing is good in old westerns, not real life. It makes kids totally stressed.
•  Do not pretend the loss didn’t occur. Use the name of the person who    died if it comes up. They died, they didn’t disappear, and those who suffered the loss will want to know they haven’t been forgotten.
• Do not point at the person in social or business situations- you may be discussing something else, but they may be oversensitive and might misinterpret what your actions mean and what is being discussed.
• Don’t compare your losses to theirs. Don't compare how people you know died to their loved one's death. Every time someone in a family dies the loss is different for each member. Your losses in your life are not the one anyone else has experienced.
• Never use the phrase “I know how you feel.” Truly none of us do.
• Statements such as “God never gives us more than we can handle” and “Only the good die young,” or “he/she is in a better place” are not comforting, and can cause even more pain. Don’t use them. The grieving person's internal response will be something like "A better place would be here with me" or "if only the good die young what does that make me?"(If they are really angry the response might include "Well that explains why you are still here telling me what to feel.")
• Similarly, telling the survivor that their karma caused them to need the lesson of their loved one's death- really? How better to say they caused them to die? If that's your belief- keep it to yourself. Telling them that will not cause them to follow your beliefs. Trust me.
•  Don’t ask about the manner of death: what is important is that someone you cared about has had a loss and you are there to support them. Do not make them recount it.
• Money, where the ashes went, who gets what- totally not your beeswax. Why do you need to know how much life insurance there was? Ashes- that's a little personal, don't you think? I had one patient who overheard her family calling to ask where where she would be scattered, and she was so angry she made her kids promise not to tell the extended family that she'd died until the scattering took place!
•  Remember that a loss for one can cause others to remember and relive their own losses.
•  Remember the anniversary of the death. Acknowledge it. That date never goes away. And don't tell the person still marking it to "get past it." They are moving forward. They have to. They got up this morning. But the important dates will always be important dates. That doesn't mean you need to make a huge issue of it- but a quick email telling them you are thinking about them- it matters. Telling them they should be past it- it's a certain way to hurt and offend. And it serves no purpose. I watched a dear old friend being criticized recently on social media for remembering a sibling's death by suicide. That doesn't mean she hasn't had a good life since then- but that date will never, ever be separated from that event. And nobody should try to tell her otherwise.

Grief is an individual experience. The average time frame in the US to recover from the initial stages of a major loss is one year. The expectation is that most grieving will be done in six weeks! Bear that in mind when expecting someone to have “resolved” a loss.

Many of us don’t know what to say to someone who has had a death in the family. We want to make it “feel better.” The reality is none of us have that power, and it isn’t going to feel better. It will hurt less over time. They will move on in whatever fashion they see fit. But "time heals all wounds" is for Hallmark and Lifetime, not people.

 

Coping- you either laugh or cry

"Get out! My Mammy takes better care of me than you!"

That was last night- the worst so far as Casper and I deal with the ravages of Lewy Bodies in her brain. She was on the floor, next to our bed. It was the second fall in ten minutes. She couldn't get up without help, yet she slapped my hand and arm as I tried to lift her from behind.

I'd learned my lesson the last time- no more approaching from the front or even the side when Casper isn't Casper and the Casper inhabiting her body is angry. Earlier that day Casper's nurse Jenni visited, and she remarked that Casper was  a "seething ball of angry." So true, that description. Casper wanted her car keys (nope), permission to go anywhere (yes- but with an escort and equipment in case she got tired), and validation that she could be who she used to be so long as Casper felt she could manage it. The conversation wasn't pretty, and Jenni told me later that I could "throw her under the bus" anytime I needed to in order to deflect the anger ball from me.

And her we were again that night. Pure, seething rage. Nothing MY Casper would ever show, much less target toward me. When we met she talked about how hard she's worked to change her approach to people. How she never wanted to be angry the way she saw anger as a child, and didn't want to be like one sibling in particular. She didn't drink, she rarely cussed, she was a prankster who loved holiday decorations and quiet time at home. She promised there would never, ever be a raised voice toward me not a hand in anger. Ever.

And yet here we were. She was on the floor. She needed help. She was, in fact, helpless. Her eyes were like daggers, along with her words. And then, the next statement:"You are tired of me. You don't love me anymore." As her brother Jay and our daughter Kerry were running into the room in response to my yells for help, the real issue, through the fog of dementia and the fear in engenders, finally explained the words.

I'm falling. I need help. I can't drive. I can't work. Intimacy is holding hands and kisses. You work too much to take care of us. I hate needing help with everything. I hate needing a bath aide. I hate raised toilet seats, fall mats, walkers, wheelchairs. I want my life back. I want you to remember me when I opened doors for you, put your coat over your shoulders, even made sure you had paper towels waiting in restrooms.

All that helplessness and feeling useless, while on the floor. No wonder you don't want me to pick you up. Add in hallucinations and delusions and the fear that you have lost your mind... Why would you want your wife of ten days to see you like this?

And so I left the room. I had a brief pity party. And then the rest of us laughed after she was safe and quiet, for five hot minutes. It was a night from hell. The morning was no better the next day. But I could laugh.

When she said she needed to get to me, I discovered i was in Kentucky, and Casper needed buckles to find me. What did I do? Asked friends on FB what buckles meant. The ideas included a horse, a Harley, and fear of Casper on a horse.

Lewy bodies are mean little critters. They will happily destroy your life as they are taking apart the brain of the one you love. They kept me up all night, and I spent lunch napping in Sun City today so I could drive safely (that's never an easy feat. An entire city of seniors on Citizen's Watch. I apparently looked very suspicious...). Tonight Casper was back to my Casper, and she had no memory or any of it. She did confirm her fear that I would abandon her as this gets tougher and her personality changes. We put that to rest the old fashioned way (you figure that out...). Then the Lewies started back. The noise came back. Her grip got stronger on my hand and arm. But this time as she was slipping into deeper and deeper dementia and delusions, I reminded her in time that I loved her, and she would never ever be abandoned. And tonight she sleeps. At least for a while.

Those "hard conversations"

I spend my days helping hospice families face the impact of terminal illness. As the social worker my role is everything except medical- and as a team we address concerns, fears, questions, misperceptions (no, hospice does not come in with a giant IV to snuff you out. We actually like quality of life and providing support).

 

A regular part of my role is to talk with families about "final arrangements." That's such a nice euphemism, isn't it? It could actually mean finalizing a catering order or fitting a suit if you think about it. In my world it's how we bring up what the family plans, or doesn't want to plan, for burial, cremation, funerals, memorials...  the stuff that happens when somebody has died that we all seem to pretend does not actually need to be discussed. The reality is that of you don't talk about it someone still has to make it happen, and if you haven't discussed it things may not be as you imagined they should be.

 

That's why they have to be talked about. And open. And those involved should be made aware of the plans. Or all hell breaks loose. Guaranteed. Someone wants their minister. Someone hates cremation. The patient always wanted to be buried in another state or country and the family can't possibly afford it and nobody has the courage to step up and make a more practical decision. Or they wait until after the death and then emotions cloud good judgment. A loved one who would have balked at buying full price anything is suddenly being placed in the Presidential casket, made from solid oak. A loved one who had no religious beliefs is being eulogized in a church they would not ever have stepped foot into when they were alive. They are only there because they are no longer there to argue. Someone gets left out because they were not considered part of the inner circle by family but they were by the person who died. You get the picture. There are so many ways to fight and argue and hurt feelings after a death, when emotions are raw, all because those conversations were not held and instructions were not written.

 

And so this week it was my turn. I've been surrounded by Casper's family all week. I was fortunate to have them here. Jay is still here, and is having lots of talks with Casper. The others all just left. And this time I needed to make sure I was doing things right for them. When Linda died we had lots of time. We had 23 years together. We were melded. I knew exactly what she wanted. I had no qualms about what needed to happen. I am sure she loved her memorial, with Angels shirts and Hawaiian shirts and a celebration of who she was and we were as a family. I knew where she wanted to be interred. We talked about our joint headstone (yes, I get to go visit my own grave frequently. No, it does not wig me out.)

 

Casper and I have had just over three years. I know what she wants to have happen. I have her permission to have a church memorial service because she now sees our church as her own, and what that family means. But her family was leaving, and I needed them to be okay with plans. So Sandy and I went to lunch at the Mission Inn. We had a nice lunch, and she got to see Riverside's finest. And then we talked. I explained my plans. She looked relieved. I was relieved. Same page in the same book. We talked about what will happen at various times, how she needs things to be done. She's now been to our church. She's comfy there. She's glad to see her sister making that connection. Finally. She's Pentecostal by upbringing. I'm Congregational. We couldn't be further apart- but we are on the same page. Same beliefs. And all focused on caring for our Casper. Now and later.

 

Had we not had that conversation; had Casper and I not talked three years ago, and times in between before she got sick as we visited Linda's grave, none of this would have been possible. Are the conversations easy? Probably not for most. More so for Casper and me, and for Linda and me- we faced mortality daily at work. We faced illness at home. Casper helped care for Linda. She continued to in keeping her marker clean and in flowers and flags throughout the year. Now I visit Linda alone and sit on what will be the Casper and Jill spot. And now I can do knowing her family is going to support those plans.

 

Have you had those conversations? Are will/trusts/powers of attorney/living wills done? Does your family know what you want? Are you sure? Organ donations? Cremation or burial? Can they afford it?

 

I know mortality isn't easy. It's also unavoidable. Make it easier. Have the conversation.

Miracles?

I had a conversation today with an old friend of Casper's. The friend, like many, truly cares about Casper and calls for updates frequently. By the end of the call I was barely able to listen. Part of the problem was me, and I fully admit it. I have a naughty sense of humor and am prone to speak when I would be better off zipping my lip and keeping my flippant thought to myself. I should probably wear a rubber band on my wrist as a reminder as a matter of fact. My evil twin stops me from stopping myself... you know, reactions are kind of fun to watch and even diagnose at times.

 

For this friend I know better. The diagnosis is confirmed, and if I let my bad twin out when she is discussing her religious beliefs or political wisdom it is never pretty. I am not fond of explosions, either. Laughter is my style (I hope), not temper tantrums. (That doesn't apply to November during election years). Where was I going?

 

So after I describe the last 36 hours in Casper's world- memory loss, trouble swallowing pills, not following commands, not being able to use a straw, mood swings...it's been a helluva 36 hours, said friend uses one of the phrases I dislike most in this world. It ranks right up there with "God never gives you more than you can handle." (That one makes me feel like a pawn in a Monopoly game, and I'm "It" and being screwed with for fun by the man upstairs. Like he has time for that!).

The phrase? "I'm praying for that miracle. She's gonna get better. God just hasn't figured it out yet." I don't know about you, but I despise that phrase. Truly. And I'm not alone in that feeling. When I facilitate the support group for dementia families it's a universally despised phrase. Hospice families as well. Caregivers don't want to hear about someone else's plan for a miracle in general. And caregivers of advanced dementia patients are way too tired to think about what that would look like.

I am not denigrating anyone's beliefs. I actually subscribe to the power of prayer to sustain families and patients as they face terminal illness. But a miracle? Medical science can grow organs now- organs that respond to blood flow and nerves. How do we regenerate a brain that has atrophied and melted? How do we restore a personality? A smile? Memories that have been wiped clean as the folds of the brain are made smooth under attack from Alzheimer's or Lewy Bodies running rampant across the brain? There are actually no research projects in the works on LBD right now. And, by the way, the NIH has no funding while Congress keeps the country shut down but enjoys their private gym. The NIH is the coordinator of research in the US for the most part.

The next statement was she was going to bring Holy Water over and would be lighting candles daily for Casper. Again, blessed be the beliefs of those who share them. But while you are lighting candles we are trying to keep Casper from choking on her own saliva. While you are planning some elaborate trip to find holy water, we are trying to prevent her from peeing on the floor because there are days she can't recognize a bathroom. While I was having the third conversation to make the friend feel better today I was trying to make Casper understand that I was home three times today and it was Tuesday and her sister Tammy is in North Carolina. As a caregiver I don't need holy water- my brother in law Jay and I need Casper to be safe in her own bed, and to be able to understand that she's not safe walking to the bathroom alone. Candles don't help when Casper is fighting the idea of a bed bath because she's too weak to get up for a shower- in fact she was too weak today to lift herself off the bed until late afternoon. This morning I had to give her all of her pills one at a time with a syringe to get water into her. Tonight she paid a huge price for sleeping for most of the last 36  hours without eating or drinking. I didn't need holy water- I needed help in the bathroom with her.

 

Miracles with dementia (and lots of other diseases) come in small packages. With Linda they came in the time she roused from a near coma to look me in the eye and tell me she loved me, and always would, and that our life together was worth everything to her. A miracle came again later as she died in my arms, without the huge struggle that usually accompanies death from pulmonary fibrosis. When my grandmother died the miracle came when the cousins could bond and laugh together (without being heard or seen) as our aunt received messages from our grandma's toes (don't ask- we are a unique tribe.). With dementia miracles come in equally small pieces: a few hours strung together where all is "normal"; your loved one knowing who you are after not knowing you the day before; Casper being willing to take her meds and not thinking I am trying to poison her; tonight when she could use a straw again; a real night's sleep; pain under control; a meal prepared and laundry done.

 

In dementia land caregivers do not expect their loved ones to turn around and regain the use of their brain. That precious organ that makes us who we are is atrophying and melting. It cannot recover. Stopping the disease progression where it is would be cruel. In our world miracles are moments of peace and quiet. Dreams of better times. Happy memories. Moments where we are reconnected and the disease is not running our planet. And friends who understand that we appreciate the good wishes, thoughts, prayers (we say them too) but that we also wish we could bring peace to our loved ones and a reality check to those who spend their time on the phone, not visiting and giving our loved ones a sense of friendship in person- a living memory of who they really were and are.

The Lewies Act Up- and time out doesn't work.

It's been a long, long day. Up at 4am when Casper got up for the first time in12 hours. Stopping her from heading to the bathroom without her walker and me behind her. Stopping multiple almost falls in that short trip. Irritating the hell out of her because she hates needing help. Now it's 4:15. I have to be up at 4:45 to take Casper's sister Tammy, Niece Carla, and great niece Alyssa to the airport. Sleep? Nope. Shower, pack the car, get ready for work. Who needs sleep? 

 

Casper doesn't look "normal." She wasn't moving well. She needed a complete lift to get up. She couldn't form words. She was way beyond tremoring. Now we are into Myoclonus:

Definition (From The Mayo Clinic) Myoclonus refers to a quick, involuntary muscle jerk. For example, hiccups are a form of myoclonus. So are the sudden jerks, or "sleep starts," you may experience just before falling asleep. These forms of myoclonus occur in healthy people and rarely present a problem. Most often, myoclonus occurs as a result of a nervous system (neurological) disorder, such as epilepsy, or of a metabolic condition, or as a reaction to a medication.
Symptoms:People with myoclonus often describe their signs and symptoms as jerks, shakes or spasms that are:

Sudden, brief, involuntary, shock-like, variable in intensity and frequency, localized to one part of the body or all over the body, and sometimes severe enough to interfere with eating, speaking or walking. ( http://www.mayoclinic.com/health/myoclonus/DS00754/METHOD=print)

 

In our world, the Lewies now include Casper being jerked around- from her arms, legs, face, neck, even her ears! It's bad enough that she tremors from head to to toe- now her body is yanking her every which way, night and day. After the wedding she slept- all night, all day, and into Monday. At 4am Monday she wanted a sandwich- and then could not figure out how to get it into her mouth.  Her sister Sandy stood watch as I headed to the airport, and less than half was eaten. She couldn't sit up- she falls over. She couldn't talk well enough to be understood. She slept more. At noon she was still asleep. She woke in pain and went back to sleep. At ten am she refused to cooperate with her meds for her brother. At 3pm she fought with me. She chewed her pills because swallowing didn't make sense. She could not figure out how to sip from a straw.

 

I knew all this. I do this for a living. I tell families to follow their nurse's instructions and to avoid straws because they are too complicated. Do you think I remembered any of that? Nope. Not  word. I became the hospice family that failed to hear the education provided. And I do that education. Really?

 

So I texted for help. Not too  big a text. More like "OMG I need help please come right now. but I am ok. Really." That kind of text. And help came. Calm. Come on Jill. you know this stuff. Pull it together. No more straws. Soft foods. We can talk about meds if they won't go down. She may be just overtired. Or this may be a downturn. If that's the case we need to cope, not wig out.

 

Got it. Wigs are on, not off. After work I bought all the Haagen Dazs without crunchies I could find. Pudding. Small cups. I'm a crisis manager. I can do this. I tell the rest of the familia. I dose her with morphine because the neuropathy is out of control. Casper feels like her legs and arms are on fire. I back up- the "Do not touch me" warning is a strongly worded one. Stupid Lewies. Stupid PD. I want to comfort my wife. We've been married for 48 hours. And I can't touch her: It hurts her too much.

 

And so tonight we wait. Is it better if it's just exhaustion? Is it better if this just does what it's going to do and Casper does not have to deal with months and months of this? It's not my call. It's not fair to her. It's not okay with anyone here at home. For the next few days we will watch and listen and comfort if she can allow it. And we will feed her ice cream with chocolate sauce that will spill all over her and the bed. Because it makes her smile inside. 

Our wedding- Lewy Bodies included

Casper and I were fully, legally, completely married this weekend. (See above photo for smiles and happiness). We were supposed to be marrying on December 14th. Then in November. Then, when we started hospice, Dr.Mall called me and said he was worried Casper would not be able to walk by November. That was three weeks ago, and I truly wondered about his overprotective side getting in the way of planning our wedding. I have learned my lesson. Score one for docs who think they are God. Ours has an inside line with the Big Guy. (Or maybe he's an experienced hospice doctor. It's your call.)

 

We bumped up the dates. I called and emailed. We got the family here. I am not sure how, actually. I'm so tired today my brain is a bit fuzzy. We managed to get caterers and bakeries and florists and organists and the church and musicians all lined up. We found a new photographer- who was awesome- and we pulled it together. The day before we had a dedicated bunch of friends helping with set up. Casper's Candy Corner came together thanks to friends from work- including her nurse. Saturday the florist made the decor come together and the various contractors arrived without a hitch. The weather even cooperated. That's a very big deal when you understand that our church is a big, beautiful, 100 year old Mission Revival building with absolutely no air conditioning.

 

But underneath it all was Casper not quite getting why all of it was happening so fast. Finally the week before she asked. Why October? Why is her sister, who never ever flies, coming to California?

 

Finally, a quiet conversation. Late at night. We are changing the date because the doctor told us too. He values you. He wants you to have this moment. For us to enjoy our wedding. Casper is quiet. Okay, then let's do it and enjoy it.

 

And so on Saturday the CHHA Shaneen came to get Casper ready. She won't allow me to bathe her, but Shaneen can convince her every time. Shaneen dresses her because buttons are now way too hard to manage. Have you ever tried to button a shirt with tremoring hands while falling over even sitting down, and then trying to keep the holes and buttons lined up? It makes "Ms. Pac Man" combined with "Whack a Mole"  seem simple. The family was assembled- Tammy, Sandy, darling one year old Alyssa and Jay from North Carolina; my sister Anne from Chicago; all three kids; best friends Sherry and Tracy; my cousin Kelly; Our niece Kelsey; our niece Linnea; the extended family, our friends... music played,"The Wedding March from the Sound of Music"- and away we went. 

 

Casper was glowing down the aisle. She was able to walk because she had her sister and brother on each side.  The wheelchair and walker were waiting in the wings. She ignored them. The flower girls charmed everyone. We met at the alter.

 

Casper tremored. Unless you knew what to look for you wouldn't have seen it. She wobbled. We held hands tightly, lovingly- and for all we had to keep her upright. Jay was watching every moment. Chloe watched from the pew. Kerry was arching her brows watching for signs of trouble. All of us smiled. Casper wobbled. We held hands as we prayed (OK, I prayed, Casper stood by and looked content). And then we had to go up the four steps to the chancel.

 

Four steps. Just four. OMG. Four! Whoops- church. Oh Goodness- four! I held on. Jay held on. I tripped on the four thousand yards of tulle on my dress (Casper chose it- it was her fault!). We stayed upright. Our minister Jane Quandt was waiting for us. Trying not to look alarmed. Jay stood by from a distance. Watching. We prayed again. I could feel Casper falling backward. She didn't feel herself fall. I looked at Jay. We used sign language of eyebrows and nods and gestures, trying not to be observed. I held on tighter. Casper looked annoyed. Remember- with Parkinson's you can't tell you are falling until you are sitting down without planning to. Casper would be heading into a candelabra with eight candles. That would not be pretty. Jay moved forward as she bobbled too far for comfort.

 

We said our vows. We asked the crowd to stand with us in our vows and marriage. We did out sand ceremony with the family- Casper could not remember what to do. The Lewies struck into the day. We made it work.

 

And then we had to process out. Down those four steps. Jay to the rescue. Then to the sounds of the recessional we strode out, holding onto each other for all we had. No falls allowed here!

 

We watched the bells in the bell tower pealing as Casper tried to figure out where they were coming from. She found a seat in the reception next to the chocolate fountain and chocolate goodies. Remember- Parkinson's loves sweet stuff! She had two plates of chocolate delights from Donna Wray. An hour later Casper was done. So done. In a good way. She couldn't remember many of her old friends. She was tremoring and jerking. She was exhausted. All she'd done was sit. We got her home and by 7pm she was snoring in deep sleep. Tremoring. Talking. Jerking. Sweating. But asleep. For 24 hours.

I talked to lots of people who attended the next day. They were so impressed that Casper "looked so good." "You'd never know she was so sick." "Wow- she did so well."  I wanted to scream. I didn't. Then I talked to nurses who attended. Others who knew us and what to look for. It was a universal "We thought about going up to hold her up but didn't want to interrupt the service." "We could see her knees buckling. We were ready, but we saw you talking to Jay." "We saw her leaning back- we knew she might fall. We were getting ready to move." With this disease it can all look so normal- even when a fall is seconds away from happening. Unless you know what you are looking for, you would never know it was there. Our little secret. Us the the Lewies. We make it work- they try to stop us. Saturday it was a battle. And our love, and marriage, and determination won.

 

We were married. She smiled. She knew she'd managed to make it through. And that was all that mattered.

 

When Lewy Bodies romp: the power of microcritters in your brain

• Three weeks ago Casper and I talked about the potential for hospice to come into our lives.
• Two weeks ago I signed the paperwork to start hospice services for her because she couldn't follow a conversation that day.
• Ten days ago she tried to send the Home Health Aide away saying she didn't need help with her shower, thank you very much!
• Seven days ago she welcomed the aide and said it felt good to be taken care of (never mind that I'd tried and she would not cooperate for me. Kind of like small kids- always acting nicer for someone else's parents...). She even liked the lotion and massage!!
• Up to four days ago she would not allow a shower chair in the shower. She was adamant that she would never use it, and if she did only if she decided it and not for a long time.
• Today Casper could not get up on her own. She could not walk even with a walker without total help (we call it "max assist").
• Up to a few days ago she used pain meds sparingly. The last few days- total max on all of them. The tremors have been so severe she can barely manage it.
• Yesterday she went downstairs to watch her brother Jay working on vases I found on Pinterest for the wedding (I look at Pinterest- Jay makes it happen. The lesbian sister in law and gay brother in law make a team- and his are prettier than Pinterest!) Casper was downstairs for less than three minutes when the shaking got so bad she had to be helped back upstairs and spent the rest of the day in bed.
• Today she needed help with everything including holding a milkshake, and the choking so common in Parkinson's was back for a while.
• This morning she agreed to use the walker for the wedding, and to have the wheelchair there in case it was needed. Tonight the walker hasn't left her side.
• Sunday she slept all day after sleeping an hour at a time Saturday night. I was not allowed to leave her side.
• Sunday night she awakened in a weird fugue and was convinced she was alone all day and the bed Jill was out carousing all day. (I really hope my evil twin is having fun- I am paying a high price for her stupid behavior!) Then she slept again, only to awaken convinced I had starved her all day (we did eat dinner) and she ate half a cake with her fingers out of a box.
• Today after her much assisted bath our sheets were changed- thank you Shaneen!- and the chocolate is finally gone.
• And today she used the shower chair. Without argument. She was unable to stand, unable to sit without falling over.

 

"Why the big sudden change?" It's a question I am getting repeatedly. Maybe it's not really that bad. (It is). Maybe you are seeing things through a bad lens (Jay said he can see the change, and it hurts him to know his sister is failing so quickly. He hates to tell me when she's disoriented all day).  Maybe we need to "pray harder" and light a candle and God will make it all go away. (Much as I like to think God is compassionate and loving, I am also rational and know a disease process is what it is and will do what it it programmed to do. I may not like it, but it's not going to stop for a candle.) Maybe there is a medicine or tree bark or special xr-ay that will make it all go away (the Feds have shut down the NIH this week because of Congress. Even if there were something in the pipeline, which there isn't, research is closed for the season. Dick Cheney got his newest heart and anti-rejection drugs. Lewy Bodies are an orphan group. They don't make money for pharmaceuticals).

 

The answer is that Lewy Body Dementia with Parkinson's is an especially ugly little disease that acts even meaner when it takes over the brain of someone under the age of 65. It takes a long time to diagnose for a whole lot of reasons, all of which involve it looking like other issues. It can't be truly diagnosed until autopsy (isn't that a nice thought?). And it's more common in men than women. Maybe Casper being so butch played a role? (I'm kidding. Don't take that seriously). When Lewy bodies start romping around in your brain you cannot stop them; you cannot slow them; and you cannot tell where they are going next. One day, or hour, might be like old times. Eerily like old times. As Casper has gotten so much worse her smile has returned at times. I haven't seen it in two years. Her romantic side pops up once in a while. No- pull your head out of the gutter. She calls with sweet messages and can figure out the phone. She wants to cuddle. Then the Lewies come back, like last night, and a sweet cuddle turns into a punch in the face because the uncontrollable jerks return with a vengeance. I imagine they are like Tribbles (Any old Trekkies?). They reproduce. They take over. They pretend to be nice. Then they strike. Tribbles are no longer my friend.

 

Neither are the Lewies.

 

Next week her family arrives from North Carolina. My sister from Chicago. I have tried to get them ready for who they might see. It might be Casper. It might be a shell. She's trying hard to be ready. I'm trying hard to make sure she knows they can visit her while she's in bed. And I am telling those stupid Lewies they need to give us a break for a week. Or even a day.

 

I am guessing they are, like Tribbles, laughing.