Tag Archives: sandwich generation

Now, THIS is crazy!

28 Jun

Image from Zazzle.com

It’s Father’s Day. I’m sitting with my Dad on the patio.

“How are you, Dad?” I ask.

“Not very good,” he says, looking down at his hands. I’ve never seen him this sad.

“Your mother rejected me,” he says and tells me, through tears, that my mother left him.

I start to cry, not knowing which is worse, telling my father that my mother died nearly four years ago or letting him believe she’s still alive and left him.

“Dad,” I say, as gently as I can, “Mom’s dead. She died almost four years ago. She would never leave you.” He looks up, confused. He’s confused nearly all the time now.

“You took such good care of her, do you remember that?” He’s trying. “She had emphysema and you took such good care of her. She was just too sick. We had to let her go, Dad.” I wonder if he remembers making the decision ending life support. He believes me. He believes and he’s sad, but he’s calmer.

I visit my dad every week these days, but I never know where it’ll be. Last week, it was Denver. He was waiting at his hotel, while my mother and grandmother shopped for houses. They’d come to Denver for a convention, something they did a lot. Traveling to conventions, that is, not traveling to Denver. He seemed anxious about buying yet another house, but he’d never really been able to say “No” to my mother. I told him I knew the feeling.

Another visit saw us in Hong Kong, having dinner with a group of executives my dad clearly didn’t like because they’d kidnapped me. Yet another visit saw us in Rochester at a bicycle factory. There was our visit in an undisclosed location in Romania, where my dad told me he was forced to sit on a minaret to escape the men trying to capture him in Saudi Arabia. Recently, my sister married the Shah of Iraq, so we have an Arabian theme going lately.

My dad’s delusions are nothing compared to the other residents. There’s the woman who gathers all of the baby dolls and stuffed animals and arrays them on a table. She dresses them all and sets them down to sleep then complains about how she has so many babies to care for. There’s the 105-year old woman who was once a singer. She still tries to sing but it comes out as screeching wails. There’s the woman who sits quietly and, when she catches your eye doesn’t say “Hello,” but “I’m afraid.” “Afraid of what?” I asked. “Of dying,” she replied.

It’s hard not to make the leap to The Snake Pit or One Flew Over The Cuckoo’s Nest or whatever look-inside-the-loony-bin movie was popular in your particular generation. This, after all, is what crazy people are and do.

But I know better. My father and his housemates aren’t nuts. They have a terrible disease that literally eats at their brains, destroying the web that connects a lifetime of accumulated memory and leaving them with a stew of thought they continually try to make sense of.

No. They are not crazy; I am. At least, that’s what my society says. I have bipolar disorder; I am bipolar. I never know which description to use, so I use both. But no matter how I reveal my condition, I get a universal reaction, spoken or no. “That chick is crazy.” Someone even told me, “Wow. You’d never know to look at you!”

I suppose that’s a compliment; the self-harming, judgmental thoughts, over-spending and insomnia don’t show on my face. Of course, the medication helps. More likely, it’s an indication of how crazy Americans are about mental illness.

I happen to come from a family of crazies. Alcoholism, schizophrenia, drug abuse were things I learned about early. None of the crazies looked crazy. Well, ok, the schizophrenic lived in another state, so I didn’t see him very often and can’t really say he never looked crazy. Still, “you’d never know to look” at any of them that they lived with demons.

So, I don’t usually tell people I’m bipolar, though I’ve been doing it more often lately. Maybe it was the “you don’t look” it comment; maybe it’s my own growing acceptance. I’ve been more active in the blogosphere lately and the anonymity it affords makes it easier for crazies to hang out and connect with each other.

In America, you can pretty much tell who’s a flag-waving conservative by, well, the flags waving on their houses. I decided, some time ago, to take back the flag. This is my country, too, I thought, and hung the flag on our porch.

So, I’m taking back crazy. I’m a mom, a writer and a teacher. I have two great kids and the obligatory pets that go along with living in one of America’s most famous suburbs. I’m happily married.

This is what crazy looks like, people.

Advertisements

Death Becomes Dad

19 Apr

It’s the middle of the night. My dad is up from his bed, again. He does this every night, getting out of the bed for any of a number of reasons. Sometimes he just needs to pee. Sometimes something about his bed is bothering him.

“What’s going on, Dad?” I’ll ask. “Nothing,” he says. “I just have to get away from that bad environment.” I have no idea what it is about his bed that makes it a bad environment. It adjusts to make him as comfortable as possible. He can sleep with his head elevated. He can sleep with his feet elevated. He can sleep with his head and feel elevated so much that he’s almost in a fetal position.

Tonight, though, is different. Tonight, he’s not getting away from something. Tonight, he’s getting ready to go somewhere. He walks into the bathroom and washes his face then carefully combs his hair, the things he does every morning. But it’s 2 a.m., about four hours before he usually does these things. So, I ask, “What’s going on, Dad?”

“I’m getting ready,” he says.

“What are you getting ready for, Dad?”

“A meeting. I’ve got a big meeting with an architect.”

“Where are you meeting an architect, Dad?”

“Downtown,” he says, clearly agitated. Of course, the meeting is downtown. He went downtown to his office everyday for years. I should know this, he seems to be saying as he glowers at me. In his world, I’m the delusional one.

“There’s a meeting tomorrow, Dad. But it’s with your doctor. It’s Sunday, Dad.”

“Okay,” he says in a tone that indicates what I’ve said is clearly not ok. He throws his hands up in frustration.

Fast-forward two months. Dad’s in a nursing home now. His cancer is in remission. The medical kick in the teeth, though, is that he’s dying. Somehow, the chemo, the radiation, the nights my sibs and I spent tending him weren’t enough. He has dementia, pneumonia, urinary retention, leaking heart valves. He might as well have the cancer back.

I know my dad is dying because someone told me. I couldn’t figure this out on my own. That makes me feel stupid. Dying is huge; how can I have missed this? But I am a rational human. When the palliative care professionals tell us that Dad is not likely to get better than he is right now, I believe them.  At least, I believe them enough to tell them I believe them. Then I go home and do what I always do: I google “dying.”

Of course, the Kubler Ross stuff came up, but that’s not what I needed to know. Anger, denial, bargaining, acceptance. Yeah, yeah, yeah. I get it. I know where the anger is going: straight to my husband who gets to deal with me railing against whatever I am railing against at the moment. It’s never that my dad is dying. People die. Getting mad about Dad dying seems ridiculous; getting mad because my son did something bone-headed and my husband let him get away with it makes perfect sense.

I’m down with the denial, too. Dad’s not dying; he’s got pneumonia and he’ll get better. He’s got dementia but at least he thinks I’m my cousin, who has a vague resemblance to me even with that New Jersey accent. His cancer is in remission. It’s a beautiful day. Nobody dies on beautiful spring days, never mind that Mom died on a beautiful summer day.

Bargaining? Does promising myself to call more often count? Does taking the kids out of school to visit Grandpa count?

Acceptance? Getting there . . . and part of getting there is getting to know what it is I’m accepting. Before I was diagnosed with bipolar disorder, I would mysteriously become paralyzingly depressed. Then, just as mysteriously, I would feel better. A lot better. Then, out of the blue, I’d be blue. A diagnosis isn’t a cure, but at least I know what I’m dealing with now. I’m not making it up when I can’t get out of bed. I’m not a stress monkey when I can’t get to sleep. The cycles make sense and the medication makes it easier.

Getting to know death—at least what constitutes dying—has me ticking off the items on the Diagnosis: Death checklist.  Eating less. Check. Sleeping more. Check. Seeing friends and family who aren’t there. Check. Pneumonia. Check. Getting ready to go somewhere important. Check.

I’ve read that many dying people believe there is something very important they must do. Not like, “Oh, I have to apologize to the neighbor for calling him a son of a bitch for years.” Not that kind of thing. Here is how Ulla Mentzel, of A Good Dying, describes it:

A man who loves to sail might ask us to get the map. The all important map. Don’t you know? It’s in the drawer over there.

A soccer player might draw a playing field with an arrow pointing outside the field. Getting ready to leave the playing field.

A farmer might tell you that she has to take the cows into a different field. The one over the hill. It is very important to take them. Soon.

I’ve said more than once that I’d rather be shot in the head than live the way my father is now. “If I can’t walk, can’t remember who you are, drool, wet my pants, poop in my pants, forget to put on my pants,” I said, “put me out of my misery.”

I realize I am a coward and I should have known it. I call myself a Buddhist but I don’t meditate regularly and I am frequently not in the moment. Still, I know that dying is part of living. I place flowers on an altar every week or so. They bloom, they fragrance the house. I leave them in the vase. Their petals droop, then fall until there is nothing on the stem but a flower head. I leave them on the altar. Finally, when they are dry, I take them out of the vase. The cleaning lady admires them when they are fresh, then advocates their removal when they die. But I know, now, that they were dying all along.

Don’t Hold The Mayo

1 Mar

I never really liked sandwiches. I was a hot lunch kid in elementary school, although this may have had something to do with my mother’s great distaste for cooking of any kind. I still would rather eat something that requires a knife and fork than a variation on the Earl’s invention, with the exception of the exceptional BLT from Buzz Café in Oak Park.

So I am more than a little annoyed to find myself part of the Sandwich Generation, that lucky group of people taking care of aging—and often ill—parents, while still nurturing nested offspring. In the words of me, it sucks.

It wouldn’t be so bad, I think, if it just sucked for me, but it sucks for everyone involved.

Let’s take the aging, ill parent. The ham and cheese in his sandwich scenario, he’s slogging through chemo, radiation, insomnia, tremors, muscle rigidity, chemically-induced anorexia, nightly enteric feeding because of the anorexia, and boredom. He’s on a break from cancer treatment, a little physical vacation in preparation for massive reconstruction of his digestive system to remove the tumor from his esophagus.

The whole wheat and white bread holding his life together are my sister and brother, respectively. They do the heavy lifting, which often requires heavy lifting, of caring for Dad during the week. This consisted of driving him to doctors’ offices, hospitals and treatment centers, preparing his meals, coaxing him to eat his meals, and attempting to keep him awake during the day so he would sleep at night.

With the break from treatments, there is nothing much to break up the day, so now my sibs are looking for things to keep from shooting themselves in the head out of  boredom while providing a stimulating environment for Dad. My sister, an artist, has developed a homegrown art therapy program that consists of her encouraging his artistic talents through watercolor painting. My father is an engineer by training. My sister sets the stage, supplying Dad with brushes, paper and water. She encourages him, saying things like, “Dad, you really have a feel for the materials.” Dad, playing along because he’s that kind of guy, says something like, “My heart isn’t in this.” My sister then posts Dad’s artwork to Facebook, titling it “My heart isn’t in this.” Everyone’s happy-ish.

As boring as the days may be, the nights are full of activity. For the first two or three hours after hitting the hay, Dad sleeps an average of 10 minutes at a stretch, waking to do any combination of the following: readjust the sheets, walk to the center of the room then walk back to the bed, call out for confirmation that he is in the bed, or pee. These do not necessarily happen in a fortuitous sequence.

Once the initial settling in period is over, Dad will sleep for about 1 to 2 hours at a stretch. Naturally, so does the caregiver.

Obviously, no normal human could maintain this schedule for an extended period of time. My sister does a two-day shift, my brother another. Due to excellent financial planning on my dad’s part, he is able to afford a professional caregiver two nights each week.

And where do I fit? I am the lettuce and tomato in Dad’s weekly care. I’m sure everyone could get along without my assistance, but I’m really good to have around. I take the weekends. From sundown on Saturday to sundown on Sunday, Dad and I hang out together. Since I don’t paint and Dad doesn’t want to learn how to knit, we watch golf together. My dad doesn’t golf and I’d rather rub sand in my eyes, but we watch golf. My brother and sister get a break and I get to feel less guilty about them doing so much during the week.

If I’m the lettuce and tomato at Dad’s house, I’m the challah at home. And between my jobs, my kids, my pets and my husband, I’m feeling sliced pretty thin lately.

The jobs—there are three—are probably the biggest drain. See, each of them is the kind Rick Perry is so proud to have created: low pay, few hours and fewer benefits. But, hey, they don’t begin to pay the bills, so there’s that.

The kids are mostly doing ok. The son can be counted on to call Jimmy John’s or put a pizza in the oven. He can also be counted on to bring his girlfriend home from school, but that’s another blog post. The daughter is showing some signs of wear around the edges. She recently got unlimited texting thanks to her brother’s $300 worth of overage. So while I’m at Job One, I’m treated to messages every fifteen minutes. The most recent spate started with “I had a BAAAAAD day” and went through “I’m sad,” “I want to cry,” and “Why should I tell you?” until I had her dad call her to see what was wrong. “Nothing,” she replied to him.

The pets should soon be less of a drain. I think it’s only fair that with all the angst she’s added to my life, the new girlfriend appears ready to provide a home for the world’s worst cat. There is still the issue of the dog’s confounding penchant for soiling in his crate, but I can only expect so many serendipities in one lifetime, I suppose.

The husband is a wonder, which sounds sort of like something you’d say about an ugly baby, but he’s picking up what slack he feels comfortable with, trying to add skills that weren’t critical until now and, most important of all, being Mr. Good Supportive Husband. He’s even agreed that Mr. Perry can have back one of his jobs, so I’ll be saying goodbye to Stalker Boy soon.

I’m probably never going to love the life I’m living right now, but I’m reminded of one sandwich that I crave. Take two slices of white bread. Slather both with as much Hellman’s mayonnaise as they can hold without dripping on the counter. Place a slice of cold meatloaf in the middle. Enjoy. Proof of one of my life’s organizing principles: enough mayonnaise can make just about anything bearable.

%d bloggers like this: