One of my many facets of myself is living with Parkinson’s and not just Bipolar. This is makes it twice as hard on me to function. More specifically parenting with Parkinson’s and Bipolar as a dad. I’m realizing it’s more challenging as my symptoms continue to progress. This entry I will focus on my Parkinson’s.
When people think of or hear of Parkinson’s, especially in my case young onset Parkinson’s, their last thought to come to mind is “parenting.” More thought or attention is given to the caregiver or partner of person with Parkinson’s. It comes with focuses on their spouses burn outs from care giving, disappointments, fear of a bleak future and high divorce rates.
School’s not even almost out for the summer and the kids are excited. They’ve already laid their demands on me and proclaimed their expectations. “Why isn’t the pool up yet?” (It’s only early January!) They’re excited and can’t wait. Ready to play. Summer months means that for each of the three months I get my three kids for the first two weeks of them. My wife’s kids and my kids love it because they get to be together longer. They get to watch TV, swim, jump on the trampoline, stay up late, sleep-in. What was I thinking? Our kids don’t sleep in!
As a matter of fact on our days off, my wife and I are lucky if we’re not startled awake by some kind of domestic dispute involving any combination between any of the adolescences or younger ones. They’re not abnormal. But they’re not normal. They just get excited when you put them all in the same space and that energy has got to go somewhere.
Summer break is still a few months away, but not without my attention. It’s been on my mind for the past two months. Approaching midlife, but still considered young compared to the typical lifespan of Parkinson’s, I face one of the typically overlooked challenges not encountered by older patients, that is the parenting of young children and adolescents.
Within the last two years my own Parkinson’s has progressed dramatically, to the point of requiring dramatic changes in my daily life. To everyone who doesn’t know of my Parkinson’s certain symptoms are noticeable, but unless you know what to look for the first thought would be to think I’m drunk.
Unless I’m at home, even on a good day, there is no time I’m not medicated. Even then the more I exert myself the more it takes a toll on my body. Because it’s such a fast paced environment with countless distractions the increase of my symptoms go unnoticed. Tremors are more pronounced, I fumble to use my hands, speech is dominated with low mumbles and word jumbles, slowness gets slower, and of course fatigue dominates my body.
Fatigue is one of my predominate and most interrupting symptoms I deal with. It’s chronic and never ending. Just being a responsible parent alone is tiring enough for anyone, but combine it with Parkinson’s and it’s truly exhausting. Being a stay-at-home dad makes it all the more challenging. Being a stay-at-home-dad with bipolar and Parkinson’s is close to impossible.
The kids don’t sleep in. I’m plagued with insomnia until around between 4am to 6am. When I awake it takes my body at least 30 minutes to physically wake up from the stiffness. They want to eat. So begins the daily routine. As boring as it is for the kids that’s what it is. A routine. Almost down to the hour, but not that strict. Managing five kids while having Parkinson’s is tiring. Scheduling in rests is a must.
It’s not just about the rest, but also about preparation. Everyone fails to recognize the purpose of structure. Rightly so for my little ones. But I’m not the same from last summer. Or the summer before that. Parenting before my symptoms progressed had its own challenge just as another parent, including those of blending a new family…back then my youngest was a toddler, they were all younger. You did most things for them. They back talked, you could out wind them. They got an attitude, you could out mean them. They want to play, you want to keep up.
As my symptoms progressed things changed. Physical fatigue brings mental fatigue. The completion of the daily morning routines requires a rest. A good excuse to sit down and watch some cartoons while spending time with the kids. And I do love cartoons anyway. Having Parkinson’s is affecting the way I parent all my kids. When it comes to getting them to do things, there is no option, “I’ll do it myself.” Even more so with five of them.
Personally I can’t stand a house where every counter whether it’s a coffee table, entertainment center, end table, counter top, table, you name it, is practically a “catch all” for anything that’s laid down there just because it’s conveniently there at that moment. Clothes that are not where they belong, whether clean or dirty infuriate me. They wreak of laziness. Not to mention an attitude of taking you for granted. When there’s crap all over the floor I just want to throw it all away. On the bright side, if I allowed things to pile up on the carpet it would keep the it clean therefore eliminating the need to vacuum.
Clutter yells at me, while barely whispering to others. It’s like those hidden image picture that were popular some years ago. You know, those optical illusions you had to stare at to try to see an image that your friends could always somehow see but you never could? But more importantly I see the big picture. I see opportunities to teach responsibility and the satisfaction of a job well done.
The kids are older. They help more. Even my little one who’s five for some strange reason loves to help do chores but has a melt down when it comes to picking up her toys she’s just played with. I still do most of the household chores. That’s simply because I’m a stay-at-home dad. But I don’t pick up after the kids. I’m capable of doing the work, but I know that my body would punish me for some time. During the school year rest hasn’t been much of an issue. I have that luxury at pretty much any time I need. But I know once school is out carefully balancing rest, work and home to get through the day is going to be a challenge.
And not mention, when one of the kids gets an attitude, I simply don’t have the energy to argue or the speech for it. Although sometimes I am sucked into an argument. I get tongue tied and my words come out all jumbled. I sound like a drunk teenager having a philosophical debate who has no idea what he’s talking about.
My kids know I have Parkinson’s. My three younger ones don’t yet understand it as a disease. To them it’s just “shaky” hands. My second oldest understands it the most and seems to upset him the most out of them. Having always been a “daddy’s” boy, my weekend fatigue affects him the most. My oldest has never mentioned it.
One of my biggest worries when it comes to my Parkinson’s is how it will affect their outlook on life and even people with disabilities. A parent with a physical limitation can change a child’s outlook on life for better; especially if he or she has a positive attitude. I haven’t, and refuse to, let it get the best of me. Being an example of overcoming this disease, or any obstacle, is one the best things I can give my children. Some of my kids have positive attitudes.
However, if a child tends to have a negative attitude they can develop the wrong outlook about physical disability and people with them, or any obstacle. I try not to complain as much as I can about my symptoms to where the kids can hear. I try to not let them see them. Unfortunately, in my sons case it already affects him and tries too hard to be my caretaker instead of a son. Worse is the guilt I feel. “Let’s do ‘this’ dad”…”Let me rest for a little bit.” “Let me sit down for a while.” There’s a fear they will grow up resentful and inconsiderate.
Parenting with Parkinson’s is like a double edge sword. Research suggests that children who grow up in a household with at least one parent with a significant physical disability tend to mature more quickly and in turn lose their childhood. Somewhat similar to growing up in a struggling single parent household. My concern? With my need for the structure, the routine, the planning, the times to rest, the balancing, requiring time for meds to kick in, am I robbing my kids of their fun, any freedom, self-expression, their childhood?
But having a child share chores around the house helps teach responsibility, and yes encourages maturity. Is this so bad? I think I’m doing a pretty good balancing job when it comes to their requirements. I think they make more out of then what it is. They have come a long way. We still have some issues. Although those are out of the ordinary.
I’m constantly telling my kids, “I don’t expect you to be perfect.” And I don’t. My concern is for them to be prepared to leave our home when the time comes; prepare them for the real world. It’s not about whether or not they have dirty clothes laying on their floor or dishes to be put away. Parkinson’s is just making this harder to do.
I’ve always carried a stoic expression on my face. After my Parkinson’s progressed my face developed that “masked face.” In recent Easter pictures I noticed how much it has progressed. My kids sometimes mistake me as in a bad mood. It affects how they approach me, or don’t. And because my speech is affected it only adds to the belief. Unfortunately I fail to recognize this until later when the affective time to put them at ease has past.
There is Parkinson’s that arrives when life promised possibility instead of adaptation. Then there is Parkinson’s that arrives when possibility has become life accomplishment. Wanting to build family memories with your children before they move on is going to be entirely different than showing friends photos of them. I try not to think about my Parkinson’s as much as I can in spite of the fact sometimes I even grow sick of myself discussing it. It’s not that easy to remove one’s thoughts of an infliction that fights to take complete control of your body on a daily basis…an hourly basis….down to a minute by minute basis. Unfortunately I am guilty of sheltering the kids to some degree. Or maybe then again, to some degree, when it comes to the kids I have actually let my Parkinson’s get to me. I see how it affects my son and fear that it would burden any of others so in some overprotecting parent mode. I seclude myself in times of over exhaustion or exacerbated tremors and slowness. I keep my mouth shut when speaking is a struggle. Or am I protecting myself?
I try not to think about what I will be in five or ten years from now, as the progression of this disease. I know that it will only get harder to move, to go, and do for my kids. The harsh reality of the situation is sometimes difficult to deal with. I want my children to see that despite this disease, I remain strong and focused. I want them to learn that no matter what life throws their way I will do whatever I can for them. My whole progression of Parkinson’s has been a matter of loss and grief. Each time some ability loses some degree of function I go through a grieving process. It’s never coming back. Maybe I’m protecting myself from their perception of me.
Parenting with Parkinson’s isn’t easy. Neither is parenting with bipolar. In any case, Parkinson’s is a family disease. But that’s said about every disease. I have to make the decision every day to not live my life looking at what might happen, but on the here and now. I’ve never been fond of “what if” questions. I refuse to answer them. Being prepared is one thing, but expecting the worse is another.
That superhero dad image that can fight anything, knows all, who’s arms are stronger than all, who is safer than all….that’s the image every real dad never wants to lose. Superheroes come and go. Even they get makeovers with new costumes with image consultants. We parents have the opportunity to learn as much from parenting as their children do if they are willing to listen. Things like, hero dads are in the eyes of the beholder. There are no “cookie cutter” heroes.
While challenging, we learn that even major setbacks aren’t usually fatal and we can readily use that knowledge to teach our children to pick themselves after small catastrophes. I have the privilege applying psychology through education and from what I’ve learned through the course of my own journeys; as I continue to develop, so will my parenting.