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Matt and I are ahead of the curve. It’s not a curve we want to be ahead of, but here we are. Each of our living parents are in need of ongoing care. Matt’s mom is in assisted living with her dementia, while dad and his Lewy Body live with us.

But here’s the thing–Rosemary and Dad are only in their early 70’s. Our own kids are just school age (Kindergarten, 3rd and 5th, for inquiring minds). We’re at least 10 years ahead of most of our peers, but this is our reality. So we own it.

Routine is Our Friend

Owning it, to us, is really about an innate determination to preserve business as usual in the house. We do our best to make peace with the added stress and remember that routine is our friend. Our best friend. Matt whines like a baby when he’s out of his routine, and I’d already be off the deep end without at least some order to the chaos. And the kids, too, find comfort in the routine of school and play and home. But at this point, honestly, routine is most important for Dad.

With Dad in the house now, trying to establish a routine, and then making it happen day in and day out, is not only different, it’s waaaay harder. But it’s still a routine and there’s comfort in that for all of us. I tell myself to think of it in terms of a recipe–equal parts Dad needs and kid needs.

The reality though, is that Dad needs more day to day. He’s not a difficult person, but his Lewy Body Dementia, makes him difficult. Take a look at Wikipedia and here’s what you’ll find for signs and symptoms.

Visual Hallucinations
Marked fluctuations in attention and alertness
Mood changes such as depression and apathy
Slowness of movement
Trouble walking
Rigidity

Dad presents with all of those symptoms, sometimes it seems like all at once. We’re playing the hand we’re dealt, and to do that, things need to be just right. The house can’t be too loud. We need to keep him engaged. He needs to be catered to and watched. Always. And that’s ok.

Rewarded by Focus

We focus on making sure he has what he needs and that we’re not forgetting about the kids, what they need (in terms of love, support, and care), in the process. For the most part, I don’t think the girls notice or feel any lack of attention. Am I biased here? Maybe but we talk. We care. We keep a close eye on it.

In spite of the increased degree of difficulty, there is definitely reward. One of which is his simple presence. The added bonus of all the time the girls get to spend with their Poppi–Lewy Body or not–is a gift. Circumstances be damned. It. Is. A. Gift. Days like yesterday, for example, when Lucy (the youngest) sits him down and makes him her student while they play school. Hearing and seeing them ‘make believe’ together made me want to cry the best kind of tears. Witnessing these little moments is an absolutely beautiful experience.

But it’s Still Rough

There are some hard times too.  Sometimes (ok, almost every day) the kids turn into demons between the hours of 4 – 6ish PM.  They argue and bicker and fight for no reason, or over the silliest of reasons, or for no reason at all. The volume goes way up. They complain about doing homework or what’s for dinner. Then complain that they can’t watch the iPad. Or they’ll complain that it is too sunny, too rainy, too hot and too cold, all at once. When it comes to finding things to complain or whine about, our girls are gifted. They’re kids (I still love them) and they have meltdowns. Comes with the territory.

Maybe you have school age children and can relate. Or maybe you can remember when you did and you can relate. Or maybe you can’t relate and think I’m a wacko.  In which case, here’s how Urban Dictionary defines meltdown:

Even without dad and his Lewy Body in the house, this is still stressful.  Ask any parent. A really good day is no meltdowns (rare). A good day is one meltdown.  A bad one could be meltdown city from 4PM until bedtime. Lots of times I play the good duck and it rolls off my back. I don’t feed into it and the situations are defused.

Some days aren’t as easy and I’m inches from losing my sh*# the entire time, but the clouds pass and we get through it. And then there are the other days, the days when I’m a wreck and do lose my sh*# from the get-go. “No TV. No books. Definitely no iPad. You’re up to bed straight after dinner!”  Not my proudest moments but they happen.

Our Lewy Body Reality

The fact is that these moments are harder with dad around. They’re harder and way more stressful–but I refuse to make my discipline of the kids about Poppi. Even when the real source of me losing my mind is not their meltdown, it’s that they’re melting down when Dad is around–I refuse to do it. It is part of preserving the business as usual.  Part of preserving that all important routine.

There’s enough on their precious and malleable little minds, I don’t want them associating Poppi with stress….or with me blowing my top. When the girls think of Poppi, I want the association to be positive. Of family. Of perseverance. Of caring. Of love.

Soon enough, all they’ll have is memories.  I want them to be good ones. Business as usual.

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