How Do You Love Again? How Could You?

"Can I ask you a personal question?"

The person asking is someone I meet regularly, who has had a number of losses herself, including a spouse. We have a lot in common, and I would like to think we have each learned from the other. I have to admit, with her multiple degrees and life experience, I was intimidated by her at first. I was relieved to learn later that I was not alone in that assessment. I am still surprised when she mentions that she might have gleaned something from me. I guess I am still intimidated to some degree. It keeps me on my toes when we are conversing.

"When did you know you were going to allow yourself to fall for Casper? How soon was it?"

If you don't know me, you don't know why that might be a difficult question. But it's an important topic in grieving: allowing those who have lost to love again, on their terms, at their speed. It's hard for friends and family sometimes. They had a different loss, on a different scale, with more or less preparation. They might not have accepted a death was coming, might not have had the time to grieve beforehand. Or it might just seem so wrong that it is possible to love again. That you are being disrespectful to the loved one who died.  It may blow up the vision of what a widow or widower should look or act like. Where are the sackcloth and ashes? There are books, written by academics and clergy, grief experts and the grieving, that say there is a mystical magical timeline before new relationships should be "allowed."

Then there are those who have actually lived the loss. For me it was 23 years of love and devotion. Linda was my Peter Pan, my Spyder rider, my biggest fan, and my source of all things trivia. She was happier at my MSW commencement than I was (because she was really going to have me home for the first time in 3 years). She adored our kids (but hated discipline issues). She fixed all the boo boo's. She was also a breast cancer survivor and by the time she died we had spent five plus years of our time together coping with her being very sick. We were told twice she was going to die. She kicked cancer's ass. Chemo kicked her lungs' ass, and she ended up with pulmonary fibrosis, a 100% deadly disease that is underfunded, incurable, and evil. We prepared for her to die in 1998, and again in 2008. In between we lived with a quiet, unspoken fear that the cancer might return. She had a second mastectomy just in case, and with good reason. There were ugly cells growing. She made the most of it, getting a tattoo on the site with a pink ribbon, purple flowers, and the word "Survivor" across it. Our kids designed it. She had no need for new breasts after one implant went sour. She was flat chested and glad to be alive. I was grateful to have her there to hold at night when she wasn't working.

In 2007 we got into a car accident, and Linda tore her ACL. She needed knee surgery. She was using our treadmill daily, lifting weights, taking vitamins by the dozen. And then suddenly she had pneumonia and was in the hospital. She never breathed normally and freely again. After a series of misdiagnoses she was rehospitalized with pneumonia, and just could not seem to shake it. IV bags came and went. Her breathing got worse. When our insurance company finally figured out she was in the hospital they sent a hospitalist to send her home and he met me in the hallway. He looked at her xrays, looked at me, and said "She doesn't have pneumonia. I don't know where you got that. She has pulmonary fibrosis. She's going to die from it." I had the same feeling of the floor falling out from under me as I did when her cancer was diagnosed and we were told she would be dead in five months. Only that time she heard it too. This time I was left to tell her what was going on, and together, from that moment, we learned how you help a spouse get ready to die, and how to help a spouse learn to cope with the love of your life dying. For the record, I do not recommend either one as a good lesson, and as one to be avoided if at all possible. (I also started making a list that is still growing of the stupidest/cruelest things a medical person can say to someone.)

And so it was. Doctor and ER visits, breathing treatments, denial, anger, acceptance, trying to teach others what was going on, not being allowed to tell them because they didn't want to believe it,  loss of energy, oxygen, more oxygen, reading about what was coming...it's a process as someone goes from vital and busy and a full time nurse to oxygen dependent, swollen from heart failure, confused from being hypoxic, and wheelchair bound. From Advil once in a while to morphine and dilaudid and ativan so Linda wouldn't feel how little lung function she actually had. By the time she died she had only a tiny portion of her right lung still moving any air. The rest was all fibrosed. Her heart was caged by dead lung tissue.

Through it all, we talked. She had to sleep sitting up to breathe at all, while the oxygen flowed. She couldn't manage her meds at 2am. She was too confused. Eating was a problem. It interfered with breathing. Super chocolate milk shakes from a local drive through were her favorite. M&M's were the supplement. Our intimacy was holding hands, locking eyes, and simply reveling in still being together. We knew what was coming. And as it got closer, Linda told me over and over that she did not want to die if I would not agree to remarry. She desperately wanted me to not be alone. She wanted to remain in my future, and to help with my transition. I was so creeped out. "No I am not going to remarry. I am not going to talk about this. You are still here. Stop it!!!" But she would not let up. I was tired. I was about to be alone with three teenage girls. So Linda made the arrangements herself. She selected Casper, her hospice nurse and confidant. How many people can say their late wife arranged their next marriage?

And so it was. She told Casper she wanted her to come back and take care of her family. She was clear what she meant. She told others. Linda wanted her wish to come true, and to die knowing I was not going to be alone. I ignored her. Casper kept telling her she would make sure I was OK. Neither one of us meant it would mean more than friendship to help the kids. Who can honestly think about remarrying at a moment like that?

So I heard that question today, and realized I didn't really know the answer. After Linda died there was much consternation when I spent time with Casper. I was nervous- how do you even talk to someone without your spouse after 23 years? She was nervous- her friends were afraid of my intent. I needed a friend who remembered Linda and valued her memory, but who was not a couple. When you are widowed fitting in is a bit weird. Going home alone is hard. I remember getting a massage and thinking that was going to be the only time a human touched me that day. And yet if folks discover you might be dating, you are suddenly on the bad list. Being sad is OK, being happy is not. But if you are sad everybody wants to make you happy. But not that happy. That's too happy. That's disloyal. Or unclear thinking, or being taken advantage of (because lots of people can't wait to date a widow with three teenage girls, six cats, and a whole bunch of issues). I remember a friend who was in a similar situation pulling me aside and saying I had to remember that a grieving widow is much easier to accept and meets the norms better than one who might be grateful her beloved spouse is out of pain and relieved that the years of suffering are over. It was a moment I will never forget. And a lesson I pass on when it's the right moment.

What tipped the moment for us? What allowed me to open my heart after such a devastating loss? Was it that someone smiled back at me and meant it again? Was it the affection after years of illness? Was it Linda's permission and hearing her in my head telling me Casper shared our values and would carry her into our future (yes I know a three way relationship with your deceased spouse sounds a bit odd, but it works. Quirky is our middle name). Was it that Casper could reach out to Kerry and hold her tight in the bad times like a natural, soothe her like Linda did, and help her remember Linda's place? Was it that she stepped in when one of the kids was in danger and got her to safety? Or the times I came home from work late and Casper was there because the kids called in a medical crisis and she drove 30 miles late at night just to check on them? Or was it all of that, and Linda, and finding the right hand to hold at the right time, and strong arms that could hold me at the hardest moments? That when I needed to cry there was no jealousy, and we could together remember Linda's laugh and the words she used? That when the kids misbehaved we together raise out fists and yell at her for leaving us to cope with them? Was it that her family scooped me up, accepted me, supported us, and was as quirky as mine? That they said enough good things to counter the negative coming from some other extended family (who no longer speak to me).

I am not sure exactly what it was. I am not sure it matters. Loving after a loss is an individual moment, and a process. It's vastly different in sudden loss versus prolonged illness. It's sometimes never an issue, and sometimes it's quick. And it's the process of the griever to figure it out. A year can be too soon, and too long. Loving again does not mean you are not grieving. It means this is how one individual is choosing to manage it. Concern for the griever is natural - they appreciate it. The decision is theirs, and the love they find again, as I did with Casper, is even more precious. Once you have held the person you gave your heart to as their heart stopped for the last time you meet mortality. You know everything you hold dear can be taken away. You know rocking chairs and grand kids are not guaranteed even if you live your life right. And you know being cherished, and loved, and wanted are very precious moments in this thing we call life. If you find it again, be it two weeks or twenty years, it's a moment for which you are grateful. I know I am.

                                           Linda and Casper in Linda's final week of life.

Dementia can equal paranoia- watch your words, or pay...

Tomorrow is my birthday. It's not a milestone year, and it's really not a big deal anymore. For me, it's more a "whew, made it through another one. I wonder what this one's going to try to do" moment. I did make sure I made it to church for the May birthday blessing (we have a quick blessing in church for every month, and you get to see who else shares your month with you.) My snarky humor always hits about halfway through. Linda wanted more than anything to be there for her birthday on 2010. Our church is more like family. She made sure she was not using her wheelchair, and that she walked holding the kids and her walker up that aisle to her the words that morning. Three weeks later she was gone. As I heard Jane (our minister) say the words "and may God bless this group and allow them to be here next year once again" (that's a semi-quote) I remember Linda. I guess maybe I should skip that day, but there is just something about it that connects all of us. The littles and the very olds are up there. WWII vets and three year olds who can't stop squirming.

And of course, I work for hospice. We have the most profoundly disturbed sense of humor. I really can't share much of it here. If you do not experience death on a daily basis you don't see the humor in the moments, or understand we see the passing as a sacred moment, and our jobs as a calling, but we also have to survive the daily life we live. Those things are protected behind walls and doors and texts and emails. Medical and nursing students squirm if we are not careful at times. It was the same working for CPS. Some humor just isn't meant for mixed company. It's an us and "normal"people with sane jobs and professions contrast.

 

I was reminded of that yesterday on the plane ride home from Sacramento. We were at the gate upon arrival, but the doors were not yet ready for our hordes to zoom to the jetway. Passengers were standing, jostling for position. I always wonder why- we are all headed in exactly the same place, and the luggage won't be there. But stand we do- trying not to hit our heard on the overhead compartments. I discover that I have said what I was thinking "It's like life- there's only one way out!" The woman ahead of me looks startled, then laughs. Nervously. Does she have an axe murderer behind her? Did I check my axe? I apologize- "I'm sorry. I work for hospice. We are all a bit disturbed. It's a coping mechanism." She relaxed, laughed, and said "One of my best friends is one of you (we are a tribe) and she says stuff like that all the time. And she won't share her stories!" You betcha- tribes have secret handshakes and secret humor. Our own culture. You have to have the right pedigree to get into our inner sanctum. And you probably don't want to. At CPS there was "normal" abuse. What? In hospice we have good deaths. We have body fluids. We deal with families who in Hallmark land should have a peaceful ending where nobody allows past hurts to influence them. In real life we have all the family history coming to life but magnified.

 

 I was reminded of the impact of our humor in the wrong context when I got home tonight. I was late. I worked late and then somehow we needed milk and dish soap. Cats needed food. Like they deserved to eat or something outrageous like that. And then I opened the mail. And my mouth. Whoops.

 

I should have checked myself. I'd taken Casper with me for part of the day. She'd had a bad morning, and when I arrived home with her lunch milkshake she decided suddenly to ride along. It was 91 degrees. In the shade. Five minutes later I had the air on super cold to get her as cold as possible. Kind of like freezing a bear to get through to Spring. I got her a cold drink. I found a tree to park under. And I focused as best I could to keep my first meeting on target and task oriented, knowing I would be back tomorrow. Afterward I headed to the office to get supplies, and Casper came in. She worked there for years, but hasn't since 2011. She usually avoids it because she doesn't remember who anyone is, or if she knows them. Today she needed to, and she was bombarded by folks who regard her well but who she can't remember except for those in long term memory, however tenuous. I could see her stress when she started to freeze and have trouble with words, and looked for help. Then on the way out we were met by one of our bubbliest, warmest staff- who did not work with Casper and was not in long term memory. Oops. Big hugs, shared confidences, but Casper was completely stiff. When we cleared the building but before the door closed..."Who was that ______?" Why was she hugging you? And me? I don't like her."

 

What? She looks out for me. She works in a team with me. We talk all the time. Check that- not in long term memory. What Casper saw was a very attractive warm and bubbly woman hugging me and then her, and squeezing my arm. All friendship- except in dementia land and under stress when she can't remember her old office. I've got some 'splainin' to do. Fast. I explain who that was, why she is my friend. And Casper's. How much she helps me. "Are you sure? I thought we didn't like that one." Nope, that's a different one. This one is ours. She's my team. Derail. Talk about seeing those she can remember and misses- Maribel. Adee, Deb. Terry. Shannon.  Remind her of the others I work with now who are so much help by phone. She relaxes. I get her home so I can fly back to work. But it's a bad Parkinson's day, and her mind is as jumpy as her body and nerves. She's exhausted, she wants to sleep, but every nerve is enervated, and raw, and her mind will not quiet. When I return there is more drama at home, and that makes it so much worse. She cannot tolerate any stress on days like this. You can literally see it on her face and in her hands and neck.

 

Back to that mail pile. Partway through is a letter from church. Bless you Lori DeVoe for doing that. "I don't have a church." Yes, you do. "Okay, but why would they want to send anything to me? I'm not a member. I can't go sometimes. I don't believe the way some of them do." That would be the point. You don't have to in order to be cared about. She looked at it again and smiled. The very next piece of mail I just had to read out loud. Dumb Jill. Just dumb. Dementia makes for paranoia in and of itself. If you can't remember, how do you know people aren't making stuff up? And how many times in hospice do we see families who specifically tell us not to tell the patient they are dying and on hospice? (Yes, really. Because who might think a patient might not see they are declining, not eating, not walking, and that family is flying in from the far corners of the earth. That's all coincidence.) So I read..."Look honey, it's a cremation service. They are low cost. And it's addressed to you."

 

I know. I know. You can see what's coming. I should have too. But I forgot to separate myself from what I do. I plan funerals daily. I know how you can donate your body to science for a month and get a free funeral and biodegradable ash urn and two free death certificates to boot. I am not shy about that stuff. I get guaranteed life insurance offers for Linda ll the time. I always want to call and say "yes" with the gold sticker. I have called a couple of times and asked how soon they would pay if the guaranteed coverage person was already gone. They hung up on me. Apparently I sounded weird. But today, of all days, I should have been cautious. "Do you know something you are not telling me? Why would they send that? Did my doctor tell them something? What's going on?"

 

Whoa. Back down. I show her the barcode that says it's mass produced. It's been sent out to thousands. No, your doctor practices HIPPA. You are not dying. I am not lying. If you are declared terminal, you will know. God knows none of our hospice staff would keep that from you. They value you. They know your values. No, we are a long way from that. "But why?"

 

How do you explain mass marketing to someone who is panicked and not thinking clearly, and isn't processing. I use magazines, auto insurance, all the examples I can spot. The panic fades. But not the paranoia. Not the distrust. Not yet. Throughout the night the tremors increase. Moodiness escalates. It's a new feature we've seen only a few times. It's not my favorite. And I'm exhausted. I saw lots of very sick new patients today and very upset clients tonight. Now this. And damn it, I caused it tonight.

 

By ten we had quiet, but not sleep. That's why at midnight I'm still typing. Extra sleeping meds, extra anxiety meds, extra everything. The guardedness finally let go at 11:30. Sleep at midnight. Not good sleep- wild REM disturbance sleep. The kind nothing works on according to the literature. Not with Lewy Body Dementia. Casper is jumping, shaking, talking. I type. It's writing for mental health. Mine. Tomorrow is a demanding day. In fact, so is the whole week. So I'm using my newest mantra, plucked off Pinterest (you take what you can find where you can find it. Rule #1): "You never know how strong you are until you have no other choice." And to that I add: "You never question the fears of someone with dementia and chronic illness, you honor them and accept that they are real." And then you deal with it.

 

Tomorrow I take stock of where I have been- first social worker with Inland AIDS, CPS, Adoptions, hospice, rape crisis, domestic violence coordinator, trainer, therapist, business owner. Partner, wife, widow, wife, mom(my), daughter, sister, aunt, cousin. Political activist, church member, neighborhood activist. Caregiver. The next year, if I stop days like this one, should be an adventure. Graduation is next month for my youngest. So is her 18th birthday. There is a party to plan, and I love that part of life. The celebrations that matter so much. Hawaii is coming. More presentations. Maybe a book or two. And tomorrow I will keep my watch on, so we can all enjoy it. No snappy mom, no death jokes, no bad Jill behavior. That will be the hardest task of all.

 

How Much Do You Explain?

There's a natural rhythm that occurs over time when you travel with your spouse. Linda and I developed it over time before the kids arrived, and then honed it to a fine science to manage their needs as they grew. We knew what foods to pack, what went into the backpacks, who would hold the tickets. To be honest much of it was me because I was the travel planner, but Linda was great at managing the kidlets and at navigating airports. She loved traveling and adventure.  She also loved cruises, something I do not miss. Casper is not fond of water, which suits me just fine, thank you!

By the time Casper and I became an "us"  and had a chance to travel, her symptoms had already started. She was already beginning to have trouble with directions, navigation, and memory. There was no chance to figure out who had what strength to bring to the table (or plane) - by that time Casper was already getting lost in airports and forgetting flight information. Added to that was Casper is not a good flyer, and my flight karma is usually challenged. We make a great pair in the air!Where we were going mattered far less than that she could see me and knew what gate we were supposed to board through.

This week's trip to Sacramento became a necessity to take Casper because I was going to be gone for five days, and being gone for five consecutive hours can sometimes mean five calls asking where I am and when I will be home. Don't get me wrong- I wanted her here with me. But it was also necessary. I hoped she would come and listen to our presentation too. It's always nice to have a cheering squad, and we were missing Tracy who could not make this trip.

I requested priority boarding for Casper online, and indicated there was a neurological issue. One would think that would make its way through cyberspace to the airport ticket counter. One would be wrong to hold one's breath. Travel day is somewhat like this: pace around the house until Jill gets home; rush the luggage downstairs so we won't be late to meet Sherry and Tracy, forgetting three important meds in the process; pace while waiting for them to arrive (on time and with several texts to assure us they were en route);  worry we will be late all the way to the airport; try to manage the airport check in and security; forget to take off the belt, worry about me not being behind in the strip-you-naked-via-xray line; worry that we lost Sherry in the strip-you-naked line; tremor while trying to get shoes back on because stress makes Parkinson's worse.

Finally, we get to the gate, and get a strawberry shake so Casper can have lunch. Strawberry shakes and sweet potato fries make a totally balanced diet any day- and meet the PD taste bud specialties of sweet and salty perfectly.

Once we were at the gate I needed to get her blue card for handicapped passengers. I have to commend Southwest- unlike United and Continental, they do not require an interview with the passenger at the very public and usually crowded public counter about their medical condition. This time the staff asked about her condition, and said they needed Casper. I told them she was embarrassed, and pulled out our 2 gallon ziplock bag of medications. The clerk told me he was sorry, but some people lie. I offered to take every bottle out, and he said he would be happy to offer a blue card and early boarding. Whew!

When we made it on board and got settled in Casper started looking for Sherry. And looking. And worrying. I texted. Casper looked. I knew Sherry was number 56 in line, but Casper was certain Sherry might have gotten into the wrong line. Sherry, who flies at least monthly. Who has been my travel companion multiple times, and set this trip up so we can do a professional presentation to market our practice. Who can manage an airport in her sleep (and I suspect she sometimes does). But Casper has no reason to know that. Our history does not reach that far back. She wasn't part of all the trips to Northern California for the Heart Gallery, to see kids in adoptive homes, and long, long ago to go wine tasting in Napa or to get married in San Francisco. This is all new to her, and that makes it nerve wracking and makes the tremors worse. I can see them, but she's pushing on her legs to make them stop jumping and has her hands in her pockets to make them stay still. Finally Sherry arrives at door of the plane, and we have an hour and ten minutes of relaxation.

That's about the time I realize that our lack of travel rhythm has caused me not to take one last look around our bedroom before we left, and that three meds are still sitting on a shelf at home. Not a great realization at 30,000 feet, let me assure you. I am full aware that Casper will not sleep tonight and that I will be tired tomorrow, as we are doing our much awaited and planned presentation. Lots of thoughts, and words, run through my mind. None should appear here.

We land. I grab my phone. By the time we are in baggage claim the problem has been resolved except for details. My mom has agreed to rescue us, and the kids are lined up to help Grammy. The rhythm may not be lost- it's morphing into a new normal, with new strengths. Kids who are young adults and who are willing to help; a Grammy who now needs help to help; a mom who is traveling without kids for a new adjunct to her career and hoping it will eventually mean  enough retirement to take care of everyone depending on her. And a best friend and colleague who is having to adapt to a new normal in my travel routine.  This really is "caregiving and change" in action.

We get to the hotel, and my stress level is back up. Of course my knee is stressed too- we were squashed in a cab from the airport and my knee was having an intimate moment with the inside of the car in a most uncomfortable way. I love dents in my knee. I can see Casper trying to remember what city we are in. I know she's not sure what day it is. I know she's not really sure why we are here. A conference? We need CEU's? The details are not there. We get to our room and I make sure she unlocks the door so she will know she can. I can see she's exhausted and needs to lay down. I unpack, she checks the room, we get her down for a late nap. I check to make sure she knows to use the area code and leave her to rest while Sherry and I go to check out what we have gotten ourselves into. We are planners and need our lay of the land. In the back of my mind, always, is "What happens if Casper needs me?" I discover how blessed I am- Casper is okay, and sends us out for dinner and drinks so Sherry and I can talk with only a request for something brought back for her.

The next day I have had zero sleep. Casper shook all night. Tremors kept both of us awake. I find Sherry, and we find coffee and breakfast. The new normal. I pray Casper will sleep with the meds she's taken to stop the tremors, and that she won't wake up and need to reach me when we are in the middle of our presentation. We get through our precheck- props, computer, mic, seating. We are so set we have time for a picture with our sign. Our presentation is going well, and Sherry and I are back in our rhythm. I look up- and try not to stumble. There, in the back of the room, is Casper. What? We are in the middle of a big conference. We  are in a side room on the second floor. How did she find us? And how proud am I that she showed up to hear us do our thing? I look up five minutes later and she's gone. Now am worried- where did she go? Back on point, back to work, and a quick prayer that she'll be okay and we'll find her afterward.

This afternoon we are a day after our program. I steal Casper away for a trip to the capitol building. But where yesterday she was interested and involved, today nothing is of interest. Casper can't make her feet walk normally, and she has almost fallen four times just this morning. She isn't tracking well, and what would have been interesting before doesn't hold any interest suddenly. She's sweating profusely and her affect is flat. We barely make it across the street next to the Capitol because she is so stiff her legs won't work. An afternoon outing is cut to an hour because she just can't manage any more. I realize as we are walking that we are on day two of a medication increase, and its already past golf time for our doctors. I google the dangerous side effects. Check, check, check. Damn damn damn. Casper was just beginning to feel better and less sad with the impact of the PD meds, and now this? While we are away from home? On Friday afternoon? I use my best coping techniques and pray for the best.

Casper has been waiting since yesterday to cruise the conference exhibitor  hall for free goodies. She's asked to  go five or six times. I grab her arm and away we go. She loves the pens, the notepads, even the cheesy coffee mugs. We now have enough shopping bags to last five years. The exhibitors watch us quizzically. I have a badge on, Casper is grabbing goodies. Several times after she steps away I mouth a silent "thank you" after we clean someone out of chocolates. They can see something isn't quite right. I can't say anything. Finally we get to a vendor who sells guided imagery. I know it's got to be good since it put Sherry to sleep already! Casper listens to what it is. It's all new to her. I watch her listening. Some is making sense, some isn't.  Finally, she tells them she's got PD and chronic pain. She asks what they can do. I am amazed. Relieved. And glad that we are making our new normal something we can share, and talk about, and maybe even manage a little bit.

Tonight dinner did not taste great. We tried a southern restaurant that wasn't really southern. But they did have cobbler, and dessert was all we needed. Because we have a new normal, and it's a sweet one.

Traveling with dementia is not so very different from traveling with the kids

Having a partner with dementia and getting ready for a trip, to anywhere, for any amount of time, reminds me so much of when our kids were little. It’s uncanny.  When a child joins a family from foster care after an early life of neglect, any changes in routine make a huge difference. The world turns upside down:

“When is bedtime here?”

“Why is the sun up too late?”

“Why does the milk taste different?”

“When are we leaving?”

“When will we be home?”

“Why do I need that?”

We prepped the kids for even the smallest of trips- a day at Olvera Street, a weekend in San Diego, a run up the coast to see a mission and go to Solvang. All required seeing pictures of the hotel, snacks that were familiar, meds planned ahead, activities for the room, restaurants nearby that suited simple tastes and familiar foods and drinks available in the room. Prepping for a trip across the country or on a cruise was an entirely different process. Three times longer, more in depth and lots more work. On Kerry’s first cruise the ship did not offer milk in the dining room. It required a trip to the bar on the lower level. Our little Barbara Walters got to know our waitress in five minutes, interviewed her, learned all about Romania from her, and took her by the hand three times a day to go get three glasses of milk for her meals. So much for different restaurants on that trip- we were in the main dining room three times a day for the new routine of getting milk.

Tonight I’m getting us ready for a trip for five days to Sacramento. Mybusiness partner and best friend and I are doing a presentation for a statewide conference. I should be worried about that aspect of this trip. She’s had her hands full at home with other issues. I am far more worried on this end about the fact that Casper is coming along for the trip. Our oldest child is stressed that we are going to be gone, and Casper can’t remember why we are going or where or for how long. Tonight she thought we were driving there. Meds are packed for the eldest so she can spend the week with a great and supportive friend. Meds are packed for us so we can make this possible. The same questions arise:

“When are we going?”

“Why?”

“How come for five days?”

“How will I find you?”

“When can we come home?”

“Why do I need so many clothes?”

“Why are we going?”

“Where?”

As with the kids when they were little, I brought home new clothes to make this an experience. Sherry found a new restaurant for all of us to try. I got the luggage out. “Why are we packing so early?” (We leave in a little over 12 hours). Casper started to put meds in a planner. “No, we have to take the bottles and boxes. You need five days.” “But why? How long are we going to be gone?”

Stress makes Parkinson’s symptoms worse. The tremors are worse tonight, and the REM sleep is lots more disturbed. Casper is fighting and jumping and taking like crazy. Sleep will not be happening anytime soon for me. As I move stuff to get ready for bed she awakens for about the nine-hundredth time. “Why is luggage out? Are you going somewhere? Whose luggage is that?” (It’s ours. We bought it together last year for our last trip to Hawaii. My heart hurts).

There is a suitcase with clothes- soft, easy to wear, easy to match, easy to spot in a crowd clothing. There is another filled with survival gear PD style: three kinds of cookies, water, Diet 7-Up, crackers with peanut butter, M&M’s (both kinds), Reese’s. I called the hotel yesterday, and we will have a fridge in our room when we arrive. Five minutes later it will have stuff in it that will make it seem familiar to Casper. There will be a tablet out with my schedule, notes about how to reach me, a reminder to use area codes, and the TV remote will be ready.

I suddenly feel a kinship with Sandra Day O’Conner, who had to retire because of her husband’s dementia. He went to work with her at the Supreme Court for years with a helper, but finally could not tolerate waiting for her all day. I used to be jealous that she had that luxury- to be able to have him at work. So few caregivers can do that anywhere. Now I feel for her, and what it must have been like trying to hear cases or write opinions wondering if he was okay or upset that she was not available right now. I wonder if he used to watch the clock obsessing about the fact that she said she would be done in an hour or by 3pm, or by whenever, and then wasn’t. Did he knock on the door over and over? Or call and call worrying that she was hurt or not coming? I wonder how we are going to manage this first trip not to a beach where I am visible and nearby at all times. I make plans to sit near exits during sessions, to make sure I can get cell reception, to make sure the hotel staff is alert to her wandering. I have med lists, powers of attorney, and our Civil Union license ready to go.

I hope it is enough, and that our biggest issue will be finding ice cream nearby every night before bed. Milk- not so much. Ice cream? That will be an emergency.

What Meds Mean- reality check

We waited for this day. Or, to be absolutely correct, I was waiting for the results we got today. Casper was, secretly, in her heart of hearts, hoping for a completely different outcome. She just forgot to tell me.

We are on our way home from the neurologist’s office. It’s a long drive to the Traub Center in the desert. I love their staff: they welcome you, they have cookies (it’s that PD thing about sweets. Who knew?), they have a bathroom that has space for a caregiver to wait inside and help; they have TV documentaries about nature that are easy to see and follow. They have lots and lots of handicapped spaces. And none of it is obtrusive. It just meets all the needs of a PD family and teaches at the same time. We waited for this appointment for three weeks, and we had to get Casper through ECT before we could make it. Now it’s over, and I can tell it was not what she wanted.

When we got there she was quiet, but not tremoring too badly. I handed the staff my usual list of newest symptoms, how severe the others were, and current meds. I added a list of what I thought we needed. I asked them to make sure the doctor read it before he came in, and not to mention all of it out loud. PD has a cruel way of taking away one’s dignity in so many ways. Talking about it is too much for almost anyone, and especially Casper. She’s spent this week taking stock of how much her life has changed. She had an awareness of this appointment, but lost it in her memory over and over. She’s been feeling useless and stupid. I’ve been powerless to change that.

While we waited for our turn, Casper gave up on trying to stay focused and curled up. She fell asleep on the exam table. Then the shakes really started, and I was standing next to her to keep her on the table when the staff came in to check on us. The nurse, Sandy, looked at us as Casper slept and shook. Then she looked me in the eye and said “Things are really moving and changing fast, aren’t they?” As much as I hated to admit it, it was such a relief to see another person really truly seeing how far things have come, how fast this has progressed. Casper slept through the conversation, choking in her sleep at times.

The doctor arrived, and he watched. I woke Casper, and the routine started. Flipping hands on her leg, touching her nose and his finger, trying not to fall when pulled on (way not successful- he had to catch her), memory tests. This trip I could not help thinking about how he is a researcher, trying to stop PD, and his office is full today of folks with advancing symptoms. Does he ever feel like they are fighting a rising tide? He asks about the ECT. Apparently that team did not send a report about Casper’s “noncompliance” and her awful reactions. We say she could not tolerate it, and it had no effect.

He looks sad, and is quiet for a moment. I was expecting him to try one medication, to address either the PD or the dementia. He stares at Casper, then starts writing. I love that about this doctor- he writes out everything you need, he diagrams, he writes medication schedules out. It’s the little things that make life so much easier with a progressive, chronic illness, stress, and dementia. When the patient (or the caregiver) can’t remember the instructions, you have them, in the doctor’s writing. I can’t begin to explain how much easier that makes things when you get home. Dementia makes people paranoid, and those written statements make it so much easier. When he looks up, he has two prescriptions in his hand. He explains the two meds, one the much needed levodopa-carbidopa, which will address the missing dopamine in Casper’s brain. The other is a dementia med, which he refers to instead as “a memory aid.” I am thankful for his choice of words. Casper looks at him intently, and says “What about the depression? Isn’t this just depression?”

Time stops. He looks sad. That tide just hit the beach. I’m too far away to reach her, but his hand goes out to hers. “This is to treat the illness. It might help the depression, but that’s part of the illness. The dopamine loss causes depression. We are going to give it our best shot. You need to come back to see me so we can work on this some more.” Casper looks…I can’t tell. Her affect, as usual, is flat. PD stole her expressions a while ago. But her hands and feet are bouncing. Pill rolling. I see her force her hands between her legs to try to control them. He hands me the piece of paper with more side effects to watch out for, ones he doesn’t want Casper to even know about. I am grateful he is being sensitive to her, and heard me.

The staff hug her goodbye. Who else does that in a doctor’s office? Casper stumbles as we get to the car. Her feet aren’t obeying thoughts and commands. She’s silent, then says “So I really have Parkinson’s? That’s what he is saying? No more going back to work? Not ever?” My heart sinks, and a tiny little piece dies in sadness. “Yes, that’s what it means. I’m sorry. I wish we could change it.” We call my mom to run a couple of errands so we can drive back slowly. Bless her for always stepping up even though she is also now using a walker full time. Casino Morongo looms ahead, and we stop. Usually that brings a smile. Today it brings confusion, although we come out ahead. (Not because of me. I am not the person you want next to you on a plane or in a casino.)

On the freeway home Casper suddenly launches herself into the back seat. I am grateful she didn’t try to open the door, as she did a couple of weeks ago on a crowded freeway. She glares at the walker next to her, and curls up and falls asleep. When we get home she can hardly walk. Her feet will not do as she wants. Her balance is off. Words won’t come. Liquid won’t go down. It’s a full frontal Parkinson’s assault. We do emergency meds, and she sleeps. As Casper sleeps I call my nurse team to ask questions. The answers are not pretty, but they are honest. I gather more ideas for managing symptoms, I try to figure out what plans we need to make (I am a social worker after all, and now we need to revise again. The calendar just changed).

Casper wakes a few hours later. She’s afraid I am going to place her in a facility, or leave her. She’s seen it too many times. She even took a patient home to die once, to prevent a placement in a skilled nursing facility. She also took care of her cremation and scattered her ashes. I spend the night reassuring her. I wake feeling like I fought with an 18 wheeler, and with a list of questions to ask my support crew.

Two days later I wake her up as I head off to work, with a reminder that Hawaii is getting closer. She looks blank. “Hawaii? I want to go to Hawaii?” Yes, you do. And I do. And we will. Because if this stupid disease is going to steal your memory, it’s going to do it in a beautiful place with friendly people and shave ice you will always remember. This is apparently the beginning of the tougher next stage, but we are going to fight it with shave ice. Not holistic herbs, not organic foods. With flourescent colors, sugar, and giant cones of shave ice. Because we can.

Lessons in dementia land:

Lessons in dementia land:

ü  Never argue: the concerns being expressed are from tangled webs you cannot see. Climb into the web and ask enough questions to figure out what is really being said or asked. Do so without judgment. Watch your tone of voice.

ü  Always take concerns seriously. If they are ignored and assumed to have gone away like other memory lapses, they might have simply gone silent, to be obsessed over.

ü  Concerns tell you there is fear involved. Even if the concern isn’t a reality, the fear is a reality. It has to be taken seriously and acknowledged.

ü  Your time is different from dementia time. It might be your bedtime, but it’s fear time for your loved one. Don’t leave them alone in it. Go home from work if you need to. They need you to feel secure.

ü  Talk about the changes you are seeing. If you can see them, they are feeling them and might be afraid to acknowledge it. Reality checks are a necessity if you are going to be a team managing this.

ü  Change your activities to meet your new reality. Crowds are sometimes frightening and old faces you can no longer name who are expecting recognition are upsetting and depressing.

ü  Prep your peeps- they will not see your new reality. They will expect recognition and the same responses. Let them know beforehand things have changed and how to re-introduce themselves.

ü  Remember that if you get lost in parking lots looking for your car, your loved one will be more so. Establish a routine, and stick to it.

ü  Cell phone reminder lessons are a must. Old skills get lost. It’s terrifying to be home and to not know how to use the phone.

ü  Night lights make night less scary.

ü  Say “I love you.” A lot. Memorize the sound of the answer. You will need it on difficult days.

I Can't Remember

“I can’t remember when my grandmas died. Or my aunt.”

I know exactly which aunt we are talking about. Casper and her brothers and sisters were raised by their beloved aunt who lived with them while their parents worked too many hours to feed their large family. It’s 9pm, and suddenly the neurons are firing about family memories and holes are showing up. I am trying to catch up to patch them.

“I can’t remember them dying. How old I was. What happened to them?”

I calculate. Its three hours later in North Carolina. Everyone there in the family is probably asleep. I text anyway. Sandy answers quickly. She can’t remember either right now. My usual font of information has herself been through cancer and is also worn out. I feel guilty for asking. Jay is next on the list. He has to be up for work in only a few hours.

In moments the information is on its way. Then more questions. Clearly, this has been on Casper’s mind and something is up. I get her questions answered, grateful that Jay is so willing to wake up and help. His sister matters to him. There are only four sisters and a brother left now, and the ties that bind have gotten tighter with Sandy’s cancer and Casper’s PD. When I ask for help they always come through. I know I am lucky.

“I want to go home and visit them.”

Uh oh. My mind races ahead. We have graduation and a birthday coming; Charity’s birthday beach trip is tomorrow. When do we need to go to NC?

“Who are we going to visit?” I have learned to ask a lot of open questions recently.

“I want to go home and see my grandmas and aunt. I miss them.”

Bigger uh-oh.  What am I hearing?

“Do you want to visit their graves when we go back this year?”

“No, I want to see them.”

We sit for a bit. HGTV plays on. At least it’s not ER night on TV.

“I just wish I could remember.” She has discovered tonight that her aunt was in a nursing home. She had no recollection of that at all.

Earlier this week Casper took stock of all that has changed. In three years she’s gone from a busy hospice nurse who drove a hundred miles a day, whose patients loved her visits, who had command of her medical skills, to someone whose illness now defines her life. She has even stopped driving voluntarily- for now.

We talk about her memory loss. There is no way not to. Dementia has an ugly way of letting you know what’s missing while not letting you find it. It compounds the losses. Magnifies them.

There are times in life when you simply can’t make the bad go away. It’s there with you, sits with you, and intrudes upon your life in every way. This is one of those times. With Linda it was the ever present shortness of breath and the limits on our life- no elevations above 2000 feet, no flying, take the wheelchair and oxygen everywhere you go, take extra just in case. With Casper it’s don’t forget the meds, take water, keep an arm out to prevent falls, don’t intrude too much, listen for moments when memory fails and a rescue is needed in public, reassure whenever possible.

“We need to fix my card.” Yes, we do. This week’s big issue has been that the cell phone no longer made sense and Casper can’t remember if she can remember her ATM PIN. Did that even make sense? I have reset the phone password, we reworked the phone to make it easier, and tomorrow we will go to the bank to practice the PIN. Casper has been afraid that something will happen to me and she won’t have access to the accounts. There are things in place to protect her, but the fear remains. How can it not? What if you forget the things put in place in case you forget?

“What day is tomorrow?” It’s weekend baby. I’m home. Not a lot of work hours this weekend. You will not be alone. The house will be calm. The kids are going to the beach. They get to have fun and it will be calm here.

“You are not leaving?” When? “Not now? Not tomorrow?” Nope. I’m home, and we will stick close until we can maybe push past this bump. Dementia has hills and valleys. I think tonight we had both. But maybe flat land will show up on Saturday and stay for a while. We see the neurologist this week. Dementia meds are the first priority. We have lost ground, but we may be able to slow it down now.

“I really do need them don’t I?”

Accepting that dementia meds are needed before you are even sixty years old stinks. “Yes, you do. And we will try them all until one works. And then we go back to Hawaii.”

Back to the happy place where the whales spout and breach and the shave ice girl knows her name. And her flavors. And never ever asks what size to make. Some things dementia can’t steal.

They Gave Up On Me

“They gave up on me.”

We are driving home from Loma Linda after Casper decided not to continue with ECT. She gave it all she had, but it was just too hard on her. Every treatment left her agitated and scared. She finally called an end to it.

When we arrived for what turned out to be the end of treatment, we were met by staff that sat us in chairs, and had us wait for the doctor and anesthesiologist. As we waited we saw another patient come back from his treatment, resting quietly on his gurney, attended to by staff. The lady who went before him was fifteen minutes post treatment, and she was already being offered juice by staff. She looked tired but calm. After every treatment Casper looked like she’d run a marathon- sweating, marks on her face and arms from being held down, and absolutely frightened. There was only one time she’d not had that reaction.

The docs arrived, and sat close to us. The room is tiny, and there was not much space to talk. Casper tried to listen as her own Ambu bag was hung on the gurney closest to us.

“We need to talk about your noncompliance. Do you want this to work?”

Casper looked stunned. She was already having trouble that day. She couldn’t get the date into her head, and she could not remember the events of the last week. She was tremoring like crazy (probably not the best term to use or think in an ECT unit).

“You have missed too many treatments. I usually dismiss patients like you, but because of the circumstances I’m willing to keep you if you promise to never ever miss a day again.”

Hold up. Casper has missed one a week, always after a bad night from her PD symptoms. Days she literally never gets out of bed. “You said she could do the treatments twice a week if it was too much for her.”

“It has to be three times or it does not work. Casper, you have to decide to come in here every time with a smile on your face and to decide that it will be awful every time but it will be worth it to you in the end. If you can’t do that, then we need to talk about alternatives.”

I watch Casper’s reaction as she tries to process those words. My head is, of course, firing like rockets with reactions. I keep my face calm and say nothing.

Casper asks about alternatives. They mention meds, and then the anesthesiologist remembers that Casper has been denied PD meds until she completes this treatment. They tell us they can arrange meds.

I finally ask about the reaction to the treatment. “She had one that went well. Why can’t you get her to that again?”

The anesthesiologist tells us she did everything exactly the same on the day Casper was calm and peaceful and the following day when she was agitated again. I tell her something in that does not add up- if everything was identical, why such an opposite reaction? She denies that there was any difference, even though one time there was post treatment sedation and the second time there was not.  

Another patient arrives from his treatment- calm, peaceful, not agitated.

I mention to the doc that Casper was the only one we had witnessed having such a reaction. He tells us “everyone” has agitation. It’s a “common” reaction. I look across at the other three patients. Calm, peaceful. Not agitated. The nurses pull the curtains at his request.

I mention that the medical literature I have read indicates that only 5% of the patient population for ECT has such a reaction. He tells me it’s incorrect. (Did I mention I read the actual medical textbooks written for ECT providers? And research from Duke University, where they started this procedure? I may be only a social worker, but I can read medical journals too).

Back to “Casper, if you want this and the excellent outcome it will bring you have to smile and decide you will like it. No more playing sick.”

I am seething, but only inside. What kind of cruel irony is it that you are telling a Parkinson’s patient to SMILE? Casper can’t smile anymore. She has to force her face to comply with messages she thinks about sending to smile. Parkinson’s creates what’s known as the PD Mask. The face loses the connection with the brain to give the command to smile.

I mention that after bad nights she can’t get up, and she’s in a lot of pain.

“We all have pain. We work through it.”

I look at the doc. He is maybe forty years old. Fit, toned, and clearly in excellent health. He does not spend his nights jumping across his bed. He hasn’t soaked his bed in sweat, had dreams that are so real they are still active when awake, and jumped so much he’s fallen off the bed. And he still gets to smile.

Casper thinks it through. I can see she’s done. I am glad she finally has a say in this. We get up to leave, and he tells her he enjoyed working with her. She looks perplexed. And then asks what meds he will be giving her. Now he looks perplexed.

“You have to call your neurologist. I won’t be seeing you again.”

Casper says “But you said you could give meds to me.”

He pats her on the back and says “Good luck.”

It’s a quiet ride home. I can see there are thoughts but Casper isn’t talking. Finally, she says “I think they gave up on me.”

I tell her we will see her neurologist soon. I have already placed the calls to make it happen. She can’t remember who he is. After some memory jogs we get there. Then again…

“They gave up. They didn’t want to try to make it work. It worked one time. Why can’t they do it right?”

Later. “This is hopeless.” I keep her with me. She rides along a few hours. The neurologist’s office calls, cheerful and bright and full of hope. “We have an appointment. We’ll stay late for her. You get her in here and we’ll get things started.” Casper relaxes.

“They are going to get meds?” Yes, they are. Next adventure? And Casper is ready to try it again.