"I want to go back to doing what I used to."
That started the whole crazy idea of a week in the mountains. Casper used to love to fish. When we were in Hawaii before she got sick she talked about pier fishing, and we never got around to it. I've been regretting that ever since. Being on a boat is not an option for either of us- I get seasick just floating, and she can't swim. But on a pier she can land a fish. Or used to.
"You want to go fishing? I can make that happen. We are going fishing. We'll make it our mini vacation for the year."
I texted a girlfriend, rented a family cabin, got the time off, and Casper invited my mom. We raided my mom's garage for my dad's fishing gear (and if you know that garage, that was an adventure all by itself!). Casper and my cousin Kelly put the fishing poles together the night before we we left. She couldn't remember how to tie the lures or how to load the pole itself with the tackle. We managed the sudden issue of Chloe needing to be home most of the week for an unexpected college class with a bribe of sushi out for herself and her boyfriend for their one year anniversary and the use of the car for a day while we were still in Big Bear. I worked too much to be able to be be away from work and my fledgling practice, and suddenly we were at blast off day. And boy did we blast- in a million directions.
I went to work from 8-12 that day, and the kids were supposed to drive up with Grandma. Lesson number one- make sure Grandma has her keys and purse attached to her side with surgical staples. It was well over 105 degrees as the kids were frantically pulling her house apart to find them. I came out of one session with a client to discover my text messages had blown up with frantic, then upset, then frustrated, then angry texts about Grammy. Finally- eureka! They were located. Exactly where they were supposed to be. But then a swimsuit and towels were forgotten, Chloe was sullen that she had to come home early, and it was so HOT outside. And I was still at work.
I raced home to find the kids and Grammy were making their escape, the pets were out of food, and I still hadn't packed, something I always do at least a day early. Second lesson: do not change the routine. Pack, even if in my sleep. Do NOT leave that to chance. I walked in to find Casper pacing. Really, really pacing. The bags were out, meds were in a pack, the kids were gone so we better go too. Now. Right now. Immediately. I wished I had meds for me...
"Hold on. I need to check that we have what we need, and we still need groceries. Just give me a moment." No- we need to go. Now. Did I mention that Parkinson's causes anxiety and agitation when stressed? Are you feeling it right now? Pacing, hand wringing, fingers pill rolling (imagine a pill between your thumb and forefinger and rolling it between them. It's a classic PD symptom, and one that occurs more and faster when stressed). I find myself totally unable to concentrate- and that never happens. I make sure I at least have socks and underwear, but as for the rest- well, they have stores in Big Bear, right?
The car gets loaded, but again Casper needs to take charge, so I have no idea where anything is. Lesson Three: Load the night before. We are never ever doing this again.
Off to the store. Did I mention it is now 110 degrees? In the shade? With no shade? Oh yes, and we are now driving Casper's smaller car, because she needed to drive. Heaven help me. My Sequoia would hold all our gear and a small army. Her Highlander now has her fishing pole (preloaded with tackle because she was afraid she could not do it herself) attached to her shirt and skin. Now there is blood. Hot, anxious, agitated, and blood. I need to go to church this Sunday.... "Get it out of me!" What? Oh yes, I get to unhook her and try to get the pole away. I am not about to mention that in my car this would never have happened. Emergency kit? I didn't pack the car. I can't find it.
We manage to get to the grocery store. Casper is driving. I am nervous. There we are-us and a million of our neighbors, in the heat, and more shoppers in scooters than I have ever seen before. Lesson Four- never leave the shopping to blast off day. It's too much stress. For both of us. We careen around the aisles. Casper has no concept that she is blocking traffic, leaving the cart wherever it is to go grab one thing or another. Four times- "Do we need bbq sauce?" Four times- "No- we aren't doing real bbq- we don't need it." By the time we check out we have three different bottles of sauce and Casper dives back into the store aisles looking for the molasses, pineapple, and brown sugar needed for a bbq we are not doing. We have precut coleslaw greens- and she hates coleslaw cut that way. Casper grates hers finely and makes the smoothest slaw ever. There is no way we are going to use it. There is something missing- there is no candy and there are no cookies in the basket (or the buggy- if you are Southern). I ask. "No- no candy. I am going to lose this weight." Oh yes, this will be fun. With Parkinson's sweet is one of the few things you can taste. Filet mignon? Ho hum. Lobster? Yucky texture. Reese's Peanut Butter Cups- rock on!
Checkout, load the car, run home with the pet food, get the swimsuit one of the kids has forgotten, answer their nine thousand calls asking why we have not left Riverside yet since they are now sitting at Denny's ordering lunch looking at Big Bear Lake.
"Are we ready?"
"Did you get my meds?"
Lesson Five: remember never to argue with someone who has memory loss, and never remind them they did something they cannot remember. It will only make things worse, and hurt feelings. Deeply. I, of course, completely lost it at that moment. It was hot. I was tired. There was already blood. The phone would not stop ringing. Chloe was doing a major sulk job. Casper was driving even though she was so shaky her leg made the car bounce as it bounced uncontrollably. So what did I do? "I didn't pack them. You did!!" Good job Jill. Way to make it better. We pull over. I have to take all the groceries for five days for five people off the luggage and out from under fishing poles with hooks on them, find the bag with the meds, which now have the shampoos and such on top, to make sure the meds are all there, including patches that are 2"x2". They, of course, are on the bottom of all of it. Casper never said a word. She can't remember packing that bag. I always manage the meds now. It does not make sense to her that she would have packed it. I am now a confirmed lunatic. The pill rolling is now at warp speed, and the foot is thumping as she tries to cope with the stress. This is vacation. Remember?
Lesson Six- use your friends for support. There was no way Casper was not going to drive. There was no way I could relax knowing she should not be driving. There comes a time when driving is no longer possible. We are in the grey area still. She can physically drive, there have been no accidents. And she still needs to feel independent and a complete partner. I so get that. Then there is riding next to her or worrying about her on the road. It's a balance. I pray that when the time comes I will have the right words. Casper knows it's an issue. She's been worrying about her license renewal all year. In the meantime, I lean on my friends. All the way up the mountains, all 8000 feet. Texting, Facebooking, messaging- if I can't see the curves we are taking too fast or the cliff next to me, or the car we are too close to because Casper is now impatient, it must not exist. I am a bad passenger in the best of times. These are not the best of times. We finally get to Denny's, find the kids and my mom, and get to sit. It's 30 degrees cooler.
Lesson Seven- relax, whenever you can, no matter how short a moment. Enjoy what is good. We have a bite, we find the cabin, it's accessible enough for all of us, and I watch in amazement as our kids make sure Grammy has her walker loaded and unloaded, that she has help with the stairs, and carry in her things. The things every parent is proud to see- kids have learned the important lessons. Casper notices too. She wants to crash, but suddenly there is an urgent need to go get fishing licenses. She and the kids take off with Kerry driving while I make sense of what got up the hill with us and take stock of what is missing.
Lesson Seven- enjoy the moments. Soak them in. Even if they are just moments. We had some great moments. Casper and Chloe and Kelly fishing. Kerry and Casper fishing. For ten minutes. Until Kerry was so frustrated with the seaweed and Casper was so agitated we gave up. Walking around the lake. Enjoying the cool weather. Time with all of us together. Casper making friends with some of the little kids by the lake and pool. We were away from work, from pets, from interruptions. That was magic. We were never away from Parkinson's. Of the five days we were gone, two were spent in bed all day because the tremors and agitation was so severe. One day Casper got up and almost fell down the stairs- she was late to meet her dad by the lake. She was crushed when she realized he wasn't there- and that she was having delusions again.
Vacation will not include a high altitude again for us. I will miss mountains. We had to give them up for Linda because she could not breathe and her heart couldn't function with the pulmonary fibrosis. Casper reacts badly to elevation now as well. But we will go get the poles loaded for ocean fishing, and head to a pier this weekend. And yes, we bought chocolate while in Big Bear, and last night she had ice cream at 11pm when delusions woke her up. Because this stupid disease may be taking some adventures from us, but we can make others, and ice cream still fixes everything. Even having to come home from vacation that was not always vacation.
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