Sunday, August 16, 2009


Complacency is an evil thing. I've been tooling along the past year thinking things with my folks were improving and that we could continue along this path for a while. It's what I wanted to believe, what my own family needed. Complacency is why I took on the board of directors position for the InHome Conference (well, that and the sheer desperation I heard from friends who needed help), why I started teaching a physics lab for homeschoolers, why I branched out looking for new opportunities for my children.

And it's why I'm smacking myself on the forehead now. Just over a year ago, my father was admitted to the hospital. His EMS ticket read "failure to thrive." One of those medical terms like when I was pregnant with Small and the nurse told me he had a condition "incompatible with life." Last year, however, my sister and I convinced my father to have a feeding tube inserted. His Parkinson's had advanced to the point that he was malnourished and dehydrated. Without the feeding tube, he would starve to death. It wasn't hard to convince him, my mother needed him. And he wouldn't abandon my mother to her dementia. Just as last week he agreed to a partial hip replacement, after a struggle, so he could help my mother continue to have some independance.

My father's Parkinson's was diagnosed 8 years ago, but he suspected a few years prior to that. I remember him being jovial when a neurologist told him there was "nothing remarkable" about his brain. That's funny for a genius. Over time the disease has robbed him of his booming voice, his ability to move predictably, and his ability to swallow. After he had the tube inserted, he became almost robust, gathering strength and a quality of life he hadn't had before. Between that and the botox treatments he receives in his cheek, he was reading, participating in daily routines, taking care of my mother and their enormous house overlooking the lake, debating politics - this frail old man left the house to vote for Obama ("the first intelligent candidate in a long time") in Indiana, a state that really counted!

A week ago he tripped over his feet and broke his hip. It has been a week of anguish and frustration, a week of struggling to get the best care possible and a week of managing my mother. There are a lot of funny things that happened too and I'll try to share them soon, not to make fun of my mother or of dementia, but to point out that there is humor in crisis.

My father and I had what I would consider to be a strained relationship for most of our lives together. Like most people, I have felt not quite smart enough to be sharing the same space with him. Now I can see he has respected me all along, I just wasn't willing to accept his love and admiration. The strain was mainly on my side, this is an unspeakable loss. Now I stand armed at his hospital bed with his DNR and the Power of Attorney, telling everyone who walks in the room that he is not deaf and has no mental impairment. The no mental impairment part often has to be repeated, nurses and doctors just assume some level of dementia in an 82 year old who cannot speak. I hand out the spread sheet of his medication and feeding schedule, translate his concerns and worries from whispers to a roar and generally become a thorn in the side of people unable to adjust their prejudices. I am my father's daughter.

It has been an incredible strain on my own family, this past week. They have rolled with the punches, done their thing, taken time off work and play to help my father out. I've missed out on a week of their lives, and will miss some more in the weeks to come as my father becomes stronger. We have been shocked out of our complacency by this horrible disease and need to become ever more vigilant. And ever more efficient in our work to accommodate for these intermittent crises. They are only going to increase as nature takes its course for both my parents.

I am grateful, however, to be homeschooling my children and including them as active participants in my parents decline and death. Already wise, they are more aware of the world around them because of our care taking role.

Monday, August 3, 2009


A week or so ago, Medium pointed out to me that she did not know what a Twinkie tastes like. We were not in a store at the time, and I don't remember how the topic of conversation came up. My first reaction was to say "You don't want to eat a Twinkie, " but I held it. I described the taste of a Twinkie, told her that I had a boyfriend in college who had toured a Twinkie factory and told me that Twinkies never see an oven and asked her if she wanted to try one. She said she did.

The next time we were in Target, we got her a package of Twinkies. Large and Small opted for Oreos in a big cup that fits into a car's cup holder. Small is still allergic to milk and eggs and amazingly Twinkies have both listed as ingredients. Also amazingly, Oreos do not. Medium did not like the Twinkie, gave the second one to Large, who ate a bite and put the rest in the composter. I now know that a Twinkie will compost.

We try to eat health, whole foods, avoiding processed foods whenever we can. But somehow it feels like snobbery to deny something like Twinkies, particularly as I was brought up on them, Ding Dongs and Ho Hos. Every lunch bag had some chemical reaction in the form of a cake inside. Zingers we discovered in High School when my brother and I had our own car and a gas card. We learned that gas stations sell food and filled up on junk until my Mom put the lid on our spending.

Junk food isn't evil, after all, and it's everywhere. My children are different enough by virtue of their homeschooling. They don't need other badges of distinction, like being denied Twinkies. They will probably never eat another one now. I remember telling Medium's Girl Scout leader that I had never been inside a Dunkin Donuts when she was wanting to take the girls to one, but wanted to clear the allergies first. I felt strange at feeling some pride at that. I have a sister who is proud of never having been in a McDonald's. It's a strange thing to be proud of. It's all wrapped up in that weird food thing we have in our family. I don't want my kids to have that.

Today we got slurpies as a special treat. Small and I have a summer cold, we didn't sleep well - when did his legs grow to the point that his toe nails can scratch my ankles when we are in the same bed? - and I had promised him a treat for skipping going out to breakfast and having to drop the other two off at the art camp in our pajamas.

I'll still cast a wary eye at junk food, chemical food. But I don't want the kids to either fear it or crave it because of my denial. The three of them had slurpies and have lived, so far, to tell the tale.