Parky Life, Parky Wife
I originally wrote this in 2013 on another platform. It still holds true. Yes, I'm aware it's not about soap or candles or lotion or body scrubs.
I have identifiers of my life that I use, whether publicly or privately. I'm a Mom, a Grandma, a wife, a chandler (candle-maker) and a soap-maker. I consider myself intelligent, funny, sometimes irreverent, sometimes bawdy, often spiritual, seldom religious. I am patriotic, determined and tougher than I appear, gentler than I seem, and all that means absolutely squat some days.
Right now, the main identifier in my life is...spouse to someone with Parkinson's Disease...a Parky wife.
Parky wives have specific rules that we learn only by stumbling over them like shoes left where they're not supposed to be. We don't get the guidelines upfront, but must trek along, until we're brought up short by "Hey! Don't do that!". Yeah, it's that fun.
See, here's what some people don't get. We get to go through every single thing our husbands go through...only instead of getting to struggle through the hardships and travails alone, we get to watch those we love the most suffer through them. It's something like I imagine it would be to have an attacker saying "Do this...or we'll hurt the one you love the most". Then watching them torture and harm him, even when we do as we're told. There's just no winning sometimes.
Anyway, back to the rules. Never, ever, under any circumstance, no matter how frustrating, painful or even annoying it is, offer help, or worse, take over a task without being asked. That one simple thing, though it was considered thoughtful and caring before the PD diagnosis, is considered emasculating and insulting.
Always let your Parky "drive" his own situation (not the car), no matter how many stupid potholes he hits, no matter how many times he forgets to signal, no matter how much he drives under or over the speed limit. Until he's actually endangering himself or others--that includes financially (and oh yes, it happens), don't try to take the wheel or assume control. One aspect of PD is that it robs the person with it of self-esteem, confidence and dignity. Don't hasten that. If it bothers you to watch him stubbornly struggle with something, look away. And if / when he finally asks for help, do try to avoid snarking on him. You're going to need more patience and more empathy now than you've perhaps ever needed before in your life.
Know every single symptom he's dealing with, the medication it responds to if any, the side effects, indications, contraindications. This will help you deal with your own frustration, and also keep track of his condition.
Learn when to assume control. Absolutely vital in case of emergencies. Being in the passenger seat when a Parky has an hallucination is not where you want to be. Hell you don't even want to be in the neighborhood when it happens, but you're going to be. Hallucinations and mental aspects of PD don't hit everyone, so you may luck out and never experience them. But know what you're going to do IF they occur.
Be prepared to become not only an armchair quarterback and expert about Parkinson's, but also about insomnia, constipation, mood swings, weakness, nausea, dry mouth, drooling, occasional incontinence, anxiety, depression, nutrition, skin cancer, fire safety and prevention, balance issues, mobility issues, loneliness, loss of companionship...just be prepared for anything and everything.
Learn what fiber bars give the best results, learn how to manipulate him into complying on those off days when all he wants to do is be a creep.
If you're not already managing the household expenses and bills, learn. Get it figured out and either discretely overseen or taken on now. Some drugs cause "fun" little side effects such as a lack of impulse control, so your rock can easily become the pebble in your shoe when he impulse shops or gambles.
Oh this is going to piss off my own personal Parky, but in two respects; eating and pooping, you're taking on a sort of "Mom" role again. Parkies can lose their appetites, and need not only to be urged (to the point of tantrums) to eat, but you also need to make sure he's eating the right things. Overfeed cheese and see how happy either of you are. Neglect fiber and your entire conversational range will be "Gotta poop; can't poop; really need to poop; GOD! I wish I could poop!; hey, I pooped and how am I going to poop tomorrow?" And when trying to please the Parky palate, don't say "What would you like for dinner?". *Nothing* sounds good, so give choices. "Do you want chicken or fish tonight?" should be the whole degree of choice. Trust me, you'll be glad you do this.
So why the blog post on Parkinson's? Especially on a business page about soap and candles and body products? Because for us, they all go hand-in-hand. Within the limits of what he's able to do, he's involved in this too. Some days, his involvement is just emotional support, sometimes it's delivering something for me, sometimes it's helping select a fragrance oil that he's never going to smell. It's life, and it might be that someone who needs to read it, will read it. If you're not "that person" who needs to read it...consider sharing it. You might know someone who's that person, without being aware of it.
