One year ago, one of my snarky co-workers greeted me with, "You celebrate 30 years and then announce you're retiring the next day? Aren't you special?" She wasn't in the loop. (I'd given more than two months' notice, plus, I stayed on an extra four weeks at my bosses' request. We just didn't publicly share the scoop because this wasn't an easy change for me.)
This woman wasn't a close friend. Most co-workers called her Barracuda because she was always chewing out someone. Our long-distance work relationship probably was a bit of a thorn in both our sides. She was always stressed out by missed deadlines, and I was continually stressed out by missed deadlines outside of my control. She had no clue what had been going on in the Snowcatcher household the previous six months. She only knew my monthly paperwork was repeatedly late, and she probably thought I didn't care. She apologized when I spilled discreet, watered-down details, but that was the last time we spoke, and that's okay with me. I'm trying to focus on the positive now, and I am so grateful that stress is gone.
The rest was much harder to walk away from. You can't work in the same place for 30 years without developing a lot of close friendships and hard-to-break routines. And then there was that whole paycheck thing. The overwhelming fear of trying to run a household on my own with stunted social security because I had to retire early. I honestly didn't know if I could do it. The progression of Parkinson's literally had me shaking in my shoes and sleepless in the suburbs.
One year ago today, I said goodbye to my bosses, my co-workers, my brand new office, my paycheck, my weekly commute, my way of life, my ticket to weekend warrior adventures, my health insurance, my life insurance, and, by golly, those blasted monthly deadlines.
I've wanted to share at least part of the story since about Thanksgiving, which was the one-year anniversary of the train of our lives jumping track. I felt as if the train kept raging forward through the roughest terrain I could imagine, with no tracks, no refueling points and no map. It's taken me ten months to grow into this new chapter and construct a whole new recipe for contentment.
I started a new book about a week after the life change anniversary. I'd successfully completed (virtual) PTSD counseling, and I thought writing about what happened (here on my blog) and why life took such an unplanned detour would further help me heal. Plus, I love to write. Or at least I used to. I got to keep my standing desk when I retired; it was mine, not office property. So I don't sit down to type. Sometimes I think perhaps that's part of my problem when it comes to finishing electronic things. It's difficult to slow down when you don't sit down. Ha ha.
Yes, I can laugh again. And it feels good. Life is not at all what we planned, but we're adjusting and surviving. We're going to get through this. We're not going to give up.
Seven months ago, though, I still wasn't ready to "talk" about the whole Parkinson's nightmare. I mean, I did, with my counselor, my bishop, my ministering sisters, my two favorite neighbors, two of my favorite penpals, my mother-in-law, and eventually even my mom. (My dad had years earlier requested all of us kids stop telling Mom any of our problems because the worry was "killing" her.) There was still too much pain for me to begin telling "the world" about what happened. Too much loss. Too much grief. Too many wounds still too raw.
And let's face it. Parkinson's does not play nicely. Things are so much better now, but Parkinson's can be unforgivingly unpredictable. It's difficult to plan anything. It's getting easier to roll with the changes now. But Parkinson's assumed the Barracuda job vacancy in my life. Our lives. I continually remind myself there's someone in this wicked game in worse situation than me. My sweet Lizard is the one who's really suffering.
That book I started back in November has 20 pages so far. Wow, it seems like I've written so much more than that. But I just checked, and that's all she wrote. The bulk of what I write must be in my journal...
I used to tell my bosses we'd have four or five bad days, then two or three good days. Now it can be four or five bad weeks, then maybe two or three good hours. Or we might get a solid week of heaven, followed by a night that seems to have taken its cue from some of the drama or horror movies Lizard used to enjoy.
This probably is sounding a lot more like an endless maze than a clarifying explanation. But I guess that's why the book isn't going anywhere just yet. Interruptions often come every few words of typing, and it's easy to get lost in memories as well as live action.
To keep from blabbering on and on, I guess I should type what I intended to write when I turned on the computer.
In November of 2023, Parkinson's took a turn for the worse, and relentless rapid decline forced me to give notice at work in April of 2024. I wanted to make it to my 30th anniversary in June if I couldn't make it until my 65th birthday. Things got so bad so fast, I wasn't sure we could last two weeks, much less two months or... until my next birthday. All the prayers on our behalf carried us through June and an extra four weeks of employment so I could train my replacements. Yes, replacements. It took more than one person to replace me.
During my job death march, I kept thinking perhaps Lizard's neurologist would be able to prescribe something to help Lizard feel better. We communicated regularly on the patient portal, but a new medication wasn't prescribed until I was able to full time monitor (and document) any changes. Ultimately, I decided I would rather spend what pleasant time I have left with Lizard with Lizard, not distracted by work. Or, unable to meet his needs when he needs as opposed to, "Just a minute, Sweetheart; I'll help you as soon as I finish this project."
After I retired, Lizard began a new medication made specifically for Parkinson's patients experiencing hallucinations. The specialists warned me we likely wouldn't experience any relief for six to eight weeks. Two weeks into the new med, hallucinations ceased, and for about six weeks, I had my Lizard back.
Parkinson's cruelly began inching its way back into the picture, and hallucinations (and delusions) are once again an everyday thing around here. It's still better than it was a year ago. By far. Last year, he was afraid to be in our house because he thought we had 30 squatters crowding us out, and they weren't friendly. Now, he thinks there's a girl sitting in the bookcase watching me crochet, and he often thinks I have a dog with me. We have no dog. With Parkinson's, every day is a new adventure. Yesterday's hallucination was bananas all over the floor. (There are no bananas on our hardwood floor.) Today's was origami all over the floor. (There is no origami in our house.)
An adult suffering from late-stage Parkinson's can sometimes seem like a two-year-old foster child, exploring how many new different surprises they can hurl at you without warning. Yes, I am extremely experienced in that kind of life. Just when you think you've seen it all, boy, Parkinson's is trying to get someone to hold its root beer again. It doesn't stop. It's that derailed train jumping the track again and laughing the whole way.
A year ago, the plan was to obtain certification to become my own home health nursing assistant. I could get paid to be a caregiver and trade my hours for in-home care so I could finally get some sleep. By the time I retired, I could no longer commit to the two full in-person days of coursework (I would have been able to complete the majority of my classes online, or at least I thought I could), much less the two weeks of shadowing a nursing assistant. I could no longer leave Lizard alone for any amount of time.
A year ago, I feared I would have to sell our house and move us into assisted living because I couldn't get by on no sleep anymore. I had no idea how I would pay for care. Buying my own health insurance until I turned 65 added to the financial trauma. I couldn't find home health willing to help, and I couldn't afford it anyway. It got to the point I was afraid to go into the restroom alone for a few minutes. I couldn't shower for about six weeks. I heard rumors some assisted living facilities refuse to accept Parkinson's patients with hallucinations.
To top off everything, Lizard had zero quality of life, and there was nothing I could do about it.
Nothing except hang on and pray.
The absence of a work schedule enabled me to sleep when Lizard slept. He typically will fall asleep at about 6 a.m. each morning, and we both can get about three hours of really good rest at about that same time almost every day. The new med is helping with sleep, and sleep helps prevent blood-curdling hallucinations. We're both getting about five to six hours of sleep each day now. It's not always on Mountain Time, but, heck, it's always 10 p.m. somewhere, right? We sleep when we can, and that's good enough for now.
Church helped. Prayer helped. Neighbors helped more than I can ever repay. Counseling helped. Sleep helped.
I try to lead Lizard every day in speech therapy, physical therapy, occupational therapy and daily exercise. He's more cooperative now because sleep has helped so much.
I've had to let go of my Antarctic, Hawaiian and Wave dreams. We've both had to let go of bicycle tours and fund-raising. We've become a little bit shut-in because crowds and anxiety amplify Parkinson's.
I'm continually trying to come up with new goals and dreams. I try to set realistic and achievable goals now so Lizard can experience success. Sometimes the best we can do is a walk around the block. But sometimes we can squeeze in a little hike or bicycle ride. He calls me his drill sergeant, and sometimes, that's exactly what it feels like. Laughter really is the best medicine, so we try to overdose every chance we get. It doesn't happen often, but it does happen.
A year ago, I wasn't sure either of us would survive the hallucinations. Now, the most painful time is when I'm sitting with him in the evenings, when he's sundowning (yes, I learned a new word!), and he asks me to find his wife for him.
I've been able to keep up with snowflakes most of the past year, I think, and I'm hoping to sew again one day. I'm hoping digital designing and quilting will find a way back into the schedule at some point. For now, I hear my garden calling, and I don't have to wait until I get off work. Sometimes, Lizard can even help.
It's not the life we planned, and it's certainly not the life we would have chosen. But we are both survivors, and we are going to get through this. With grace. With dignity. With love. Lots and lots of love.
