Blink! First day of school.

Summer flew, as summers fly. Robin did her “nerd camp” and then a volleyball skills camp. Josie, as promised, did “nothing,” which means she reread all the Harry Potter books and invented board games and wrote trivia questions and swam and did a kids’ triathlon and spent time with her parents and grandparents. Aaron worked on the house. I had a lull in my workflow. We all went to California to visit the west coast contingent of Aaron’s family and do some sightseeing.

In most years I’m overjoyed to get everyone (including me) back into a routine come September. I love it down to my bones, the new edge to the air, the earlier nightfall, the promise of all we’ll learn and do and feel when we get Back To It.

This year’s different. Robin’s starting high school, Josie middle school. I don’t have a child in elementary school any more. And it just seems like with the start of this school year, I’m one big step closer to their leaving me. I know, that’s as it should be. I know, it’s no more significant than any other sunrise in the inevitable march of time. I know, they were always going to leave, and I know, something would be wrong if they didn’t.

But yesterday nobody in our house was a high school student. Today, someone is. College is, like, tomorrow.

I have so little time left with them, and it’s hitting me kind of hard, just now.

To our bus driver, on the last day of school

Dear Ben,

I am remembering Robin’s first day of kindergarten, when she was barely 5 years old, and so serious, brave and quiet, and so focused on riding that bus. Her little frog backpack was firmly in place and her little gaze so determined. You pulled to a stop at the corner, and she marched right up the bus steps as soon as the door opened! And you could have waved and gone on, but instead you said, “oh sweetie, give your Mommy a hug first. She needs one today.” You were so kind to do that. She was a little startled that she’d forgotten, and left for school happier after that hug. And oh yes, I did need one that day.

The seasons passed and every day, Josie would come to the bus stop with us to see Robin off. She’d wave at you and show you her favorite mittens (every day, all winter long) and tell you the latest news. I have no idea if you could hear much of what she babbled over the bus engine, but you always responded as if it were the most important news you’d hear all week. One day, she announced at the top of her lungs, “I’M 4! AND I’M GOING TO PRESCHOOL! AND I CAN WIPE MY OWN BUM!” and you said, “OH, WOW!” …because, well, wow.

Those have become treasured family stories, and you’ve been a treasured presence in my girls’ young lives. I know we are only one of many families who feel this way. We are so grateful. Thank you.

Have a wonderful summer. We will see each other around town, and we’ll always wave at the bus!

 

A breakthrough, thanks to Starbucks.

Recently, Mom and I had some time to kill waiting for a prescription to be filled, so went to Stop & Shop to pick up something for dinner. Mom has her groceries delivered (hooray for PeaPod–though she does not love recent changes to your website, yo), and hadn’t been inside the grocery store for years. She was gobsmacked at how big the place is, and couldn’t manage walking the aisles. Happily, there is a Starbucks there as well, so we got coffee and sat down for a bit.

People familiar with LBD will know what I mean when I say that you never know who your loved one is going to be on any given day. On this day, I had Nice Mom. People walked by as we sat, and she smiled at them, and they smiled back. This struck her as amazing, that people seem so nice, and so happy to be smiled at. It was as if she’d never noticed that before.

Over the years I’ve learned not to talk about myself with her, nor about Aaron or any of my friends. We talk about Robin and Josie. About her granddaughters, she doesn’t twist things around, or criticize, or inject snobbish or haughty opinions. She just delights in their growth and accomplishments, or their humor, or any of their stories. So, as we sipped our coffees, I babbled on about how this or that recent event revealed some aspect of their personalities.

Last fall’s kitchen incident showcased Robin at her best. I told Mom the story from our perspective, as we came to her house thinking we were there for dinner and to fix the answering machine, but found a pretty impressive mess on arrival. I told her how scared we were, and how Josie was upset to the point of tears, and how Robin had taken care of her and handled things beautifully while I pieced together what had happened. Mom hadn’t known any of this.

I told her that Dad had been beside himself and fixated on getting her medicine adjusted as a “solution.” I reminded her that when she was diagnosed, I read everything I could find about LBD, but that there is no way for Dad to do that. I’ve told him things, but he can’t do his own research. Blindness has him quite literally in the dark. He seized on medication as the problem, but hadn’t quite come to terms yet with the progressiveness and incurability of her illness. Medicine is great at keeping some of the symptoms at bay. It won’t work forever.

I got a lot across in a very short time. Didn’t lecture, didn’t preach, didn’t rub her nose in it… just told her how it is for us, through this one incident.

She listened. Such a simple thing, but it almost never happens. She really listened. She didn’t get hostile, paranoid, defensive, or mean. She seemed, for the first time, to consider what the changes happening to her feel like for all of us. That they terrify her husband. That her grandchildren are not just aware, but coping, in their own ways. And–maybe–she came to appreciate a small fraction of what it means for me, too. That there is a real emotional cost to the increasingly managerial role I have taken in their lives. That I keep my phone within reach at all times. That there is never a day I pull into her driveway without a little nugget of fear in my gut. And, importantly, that I need her help, while she still can, to figure out the next step.

Then I listened. She told me what it feels like to have a malevolent voice in your head threatening gruesome violence and belittling your every attempt to overcome the fear of it. She told me how every day, the voice tells her it will kill her on the way to the mailbox, and every day, she tells it “fuck you” and goes to the mailbox anyway. She said that she doesn’t tell my Dad that it’s become a triumph of will just to get to the mailbox and back, but that she asks him to wait at the head of the driveway while she goes and to hug her when she gets back, and he does, and he doesn’t ask why, and doesn’t make her feel stupid for needing it. He just does it, because it’s what he can do.

It was good. Good to talk, good to hear, good to have coffee with my mother as if we were friends sharing parts of our lives. I’m going to need that Starbucks again.

In which I confirm my existence

Well, six months went by in a flash.

All is mostly well.

I’d been writing here to document my “sandwich generation” experience, sharing the humor as well as the trials and tribulations that come with having a parent with dementia. While things are still humorous (it’s life!) we did have some more on the trials and tribulations end of the scale this fall.

For one thing, there was a mishap in Mom’s kitchen. For reasons unknown, she got up at 4:30 one Thursday morning and put a plastic tray on the stove. Dad awoke to the smoke detector half an hour later. They got the stove turned off and the smoke aired out. Mom went back to bed.

Dad called her neurologist’s office, thinking that surely her medication could be adjusted, or there would be something else the doctor could do that would prevent this ever happening again. (I don’t think he’s quite come to terms with the fact that things are going to get worse.) They played phone tag that day and the next, and he became increasingly frustrated. Friday evening he called me in a total fit because he couldn’t get the answering machine to work. I said I’d bring the girls over for dinner and fix it.

We arrived with pizza in hand to find the kitchen and some of the rest of the house coated with greasy black soot. He’d told me nothing about the kitchen incident — I thought I was going to solve the answering machine problem. I would never have brought the girls, let alone food, into that setting had I known.

Josie’s eyes got huge and filled with tears. “I don’t like this, Mommy. There is something wrong here and I’m scared.” Robin went instantly into “cope” mode, in which she is totally amazing. She comforted her sister, found a relatively clean place for us to eat, loaded and ran the dishwasher.

Meanwhile I pieced together the story from Dad, and went in to the bedroom to talk to Mom about it. “Mom,” I said. “You had a lot of smoke in the kitchen, I see.”

Her response? “Really? Wow!” And, later, “am I supposed to be feeling somehow responsible for this?” (Days later, to me, “you know, your father hasn’t been himself lately. I think he had something to do with what happened in the kitchen.” If by that you mean saving things from being much worse, Mom, then yes. Yes, he did.)

Long, long story short: the house was cleaned by specially trained professionals in a process that took two weeks. The stove could not be salvaged. Insurance company hassles were minimal, but not zero.

Also: my mother has been admonished by her doctor not to consume a bottle of Chardonnay along with her medication in the evenings. This falls in the category of “things you don’t think you’d have to say out loud,” but evidently it was necessary. She’s been pretty good about it since, as far as I know.

Rick and I are doing our utmost to convince them to sell their house and move to an assisted living community. Stay tuned.

 

Summertime — and the living is… different.

Our first week of summer was sort of disorienting, with no particular reason to know what day it was and no specific time to have to get up or go to bed. We had a holiday weekend, a full moon, a sleepless night with Dad in the emergency room (he is fine, and more about that later), and an intense storm complete with tornado warning thrown in just to keep things feeling weird.

Robin’s first week at “nerd camp” coincided with Josie’s interlude between school and musical theater camp (lord help me), and my time between work projects. A few days adrift hasn’t been a bad thing, but now I need a new rhythm. For one thing, my nascent exercise routine will have to be nascent all over again.

While Robin had a terrific week living in a dorm, piloting an ROV, and studying “Strength of Materials” and other things, Josie had a terrific week being an only child at home. We had a shopping day and got her sneakers, socks, shorts, a new watch, and a new bike helmet. As usual, she chose “boys” sneakers and “boys” socks. She used to get all pissed off that the stuff she likes best usually says it’s for boys. If a salesperson asked if we needed help, she’d tell them exactly what she thought of it. Now resigned to society’s stupidity about gendering stuff, she just goes for the colors she wants without much grumbling. However, if there is ever a price difference between “boy” socks and “girl” socks, I have a feeling we’ll be speaking to the store manager.

We also stopped in a store called Five Below (like the Dollar Store, only everything below $5). I had never been in and was curious. Josie was up for checking it out. We went in, and each drifted around to whatever caught our eye. Pretty soon Josie was back at my elbow. “Mommy, we need to get out of here. What kind of store sells fake poop?!”

On the way home from our errands, I looked over at her in the passenger seat and thought, OK, a 6th grader. Not little anymore. Right. It’s not like I just realized how old she is, but she just did one of those jumps that kids do. Same kid… same kid… same kid… new kid. All of a sudden her little-kid-ness isn’t on the surface anymore. She’s big.

Robin just did the same thing – the teenager emerging where the big kid used to be. Not just in the sighing, in the way she says “…okayyyyyyyy…” when asked to do any little thing around the house, but in her long limbs, her posture, and the way she hugs me. She’s giving those hugs, not reaching up to indulge them. We went to the beach for July 4th fireworks. I told the girls to put on long pants and a sweatshirt. Robin came downstairs in a panic: “Mommy! All my pants are too small!” She’s grown two inches. When? When did this happen? These pants fit her a month ago. I guess that explains where the pancakes go.

I know I’m boring you. Every parent says the same stuff. But still.

In case you are still reading, I shall close with a rant about social media:

People have been Tweeting and Facebooking about Cape Cod summer holiday weekend traffic as if it is some kind of horrifying new and unforeseen phenomenon. Some of these people have brains in their heads, but they are acting like morons. It is July 4 weekend. Yes, westbound traffic on Sunday is terrible. Remember Thursday and Friday, when eastbound traffic was terrible? That was your clue that westbound traffic would be terrible Sunday and Monday.

You might as well be surprised when the sun rises every day. “OMG, look at this giant ball of fire in the sky! This picture was taken facing EAST at 5:30 AM.” Comments following: “OMG. Awful.” “When I looked, the fireball was getting HIGHER!!!” “Someone should do something about that. Giant balls of fire in the sky are just stupid.” “Thanks, Obama.” For the love of Pete, Cape Codders, knock it off. You are smarter than this.

And now to the summer schedule. Jumpstart that exercise routine, hit the lake for swimming and sailing, get in some campfires at the beach, avoid left turns when possible, lie low on weekends. Life is good!

In which Robin hates everything except her friends, then doesn’t, then does, then doesn’t, and goes to nerd camp.

Yesterday, we brought Robin to Advanced Studies and Leadership camp at the Massachusetts Maritime Academy. It’s a terrific program, serving about 200 7th and 8th graders from public school districts on Cape Cod. For three weeks (coming home on weekends), they’ll do a mix of STEM-related classes and activities, a humanities course, team games, music-making, and all kinds of other stuff.

Robin and her friends call it “nerd camp.” They couldn’t be happier or more excited. They’re living in dorms, and assigned roommates not from their own town so that everyone gets to know as many new kids as possible. It’s right on the Cape Cod Canal. A dorm is a dorm, but the view from this one is pretty cool.

I am so proud of her and thrilled for her to have this opportunity. It’ll be the first time she’s been away from home longer than overnight, so a major step for our family, and particularly for her sister. The girls have been fighting lately, which is unusual for them.

Robin can be bossy (first child…), and her emotions can get out of proportion when people don’t behave as she wants them to. Josie can just shut down and refuse to engage. They each get how they get, and know when to give each other a wide berth. But lately, Robin’s been picking fights, and overreacting to things even by 12 year-old girl standards. And the mood swings… omg. Yesterday she was screaming and crying about how she hated everything and nobody understands or listens to her. Ten minutes later she made us all oatmeal cookies. Today, she picked the same fight with Josie as yesterday — ending in the same screaming and crying and self-indulgent wallowing outrage as yesterday, saying how she’s DONE. DONE! with having a sister. Then she asked if they could watch a TV show together.

I think (warning: amateur psychology ahead) that a lot of their fighting has to do with getting ready to be apart and miss each other. It’s easier to be OK with a separation if they’re not feeling so happy together, sure. But more than that, both girls are at developmental stages where each is beginning to see and define herself in the world apart from her family, and apart from her sister in particular: I am like this. You are like that. I am not like that. It is OK for me to be away from that. In fact, I don’t even like that very much, so there.

All normal, I think, but it’s exhausting.

As much as we’re going to miss Robin and the house will feel incomplete while she’s not home, we could all use a break from the whole tween psycho routine. I have whiplash from following the mood swings too closely. I can’t wait to hear how nerd camp is going when she comes home for the weekend, by which time I hope to be out of my neck brace.

Hot flashes (no, not mine) and other things for the birds.

On the way to visit my parents this week, I picked up a rotisserie chicken at BJs for their dinner. If they like it, I will do that more often. It’s quick and easy for me, and considering they mostly eat prepared or frozen meals, it’s relatively inexpensive for them ($5 for a whole cooked chicken? You can’t beat that with a stick). I threw in some of the ginger snaps they love from Trader Joe’s. (I don’t know if my parents ever eat any vegetables but that’s one of the things I file under “not my problem.” If my 85 year-old Dad never wants to eat another vegetable again, I’m not gonna make him.)

When I entered their house, Dad was sitting with his head down on the kitchen table, complaining of a “hot flash.” He said he’d woken during the night and the heat had been turned on. He knew Mom did it, and he kept trying to get her to say that she’d done it. Mom, never a big fan of admissions of truth, denied it and kept trying to get him not to obsess over how it had happened. It was certainly warm in the house. She said she’d turned it “back down” to 72F. Great. I got Dad an ice pack, and set the thermostat to 70F. The a/c came on: sweet relief.

I put the chicken in the fridge, and spied a bag of Romaine lettuce that had been left out since whenever they’d had groceries delivered. “Shall I put the lettuce away, Mom?” “Sure, in the bottom crisper.” The bottom crisper was already occupied by a sad, tough loaf of white bread dated December 7, possibly of 2013. That is where things go to die. So I’ll give the lettuce a couple of weeks, then retrieve it and compost what I can’t use.

I paid the bills, then at Mom’s request, tried to help renew her driver’s license online. Turns out the RMV won’t let her do it. In fact, they’re planning to revoke her license if she doesn’t attend a driver retraining class. Evidently she’s racked up an unacceptable number of moving violations. Mom is a terrible driver — not due to age or illness, but for as long as I can remember. I’ve been nervous about her driving since I was 6, and have never allowed my children in her car. So, she’ll go to driving school this Saturday. Maybe the instructor will remember her from last time.

The December 7 bread came home with me, along with a tote bag full of books about Writing Your Spiritual Autobiography and other such nonsense. Mom has always liked buying books about doing stuff more than actually doing stuff. Week by week, I’m chipping away at this lifetime’s accumulation of worthless print via my local library’s donation shelf. I hope they’re making some money off it at the weekly book sale.

Josie took the bread when she got home from school, and happily threw it (“like Frisbees!”) to the crows in the woods. “Did that come from Grandma’s?” she asked. “Of course it did. Where else would you still find bread from December,” replied Robin.

Where, indeed.

Visiting Mom and Dad

I spend a few hours each week at my parents’ house, usually on Mondays. (For someone with a memory disorder, routine is key.) This week I went on Tuesday, because Mom and Dad had back-to-back dentist appointments on Monday. All I can say about that, folks, is FLOSS. FLOSS WHILE YOU’RE YOUNG. The more you “hate the dentist,” the more you should care about flossing. Go floss. I’ll wait.

OK? OK.

When I visit, I bring my parents lunch, pick up prescriptions, pay the bills, change light bulbs and batteries, and fix whatever random things needs fixing. (It’s a mystery to me why there is almost always at least one light bulb or battery that needs replacing. In decades of home ownership, I don’t think I’ve replaced as many bulbs and batteries as I have since I started doing it at my parents’ house.) And, of course, I hear what’s been going on with them, and help where I can.

Mom’s been having auditory hallucinations again — she is convinced that the next door neighbor’s son is watching her every move, and she hears him narrate everything she does. She says he killed his “gay lover” in the backyard, and now he’s going to kill her and my Dad. She says he watches her with stolen binoculars. In real life, this is a nice kid who just graduated from college and wants to be a priest. Mom has, on occasion, called the police to report his evil plans. The police check in with the neighbor. The neighbor calls me, understandably beside herself. I try to calm everyone down.

The hallucinations are so real to Mom that she does not feel safe on that side of the house. She relates them as if they are real: “he said,” not “I heard him say.” When I point out that he can’t see through walls, and there’s no way she would be able to hear him speak, she can perceive that it’s her brain doing this to her. But, it still does it to her. Her psychiatrist has instructed her to double her dose of the medicine that’s supposed to keep the hallucinations at bay.

In the meantime, she said, she came to the kitchen this morning and saw a skillet in the sink that had obviously been used to cook scrambled eggs. She said she had no memory of having cooked or eaten the eggs — the whole experience was a blank. “Well,” said Dad,”you should probably add that last night also included you drinking an entire bottle of Kendall Jackson Chardonnay and singing along to Burt Bacharach’s Best during the PBS on-air fundraiser.”

So, yeah. There’s that. I hadn’t the heart to tell them that based on the empty carton in the trash, the sell-by date on those eggs was in February. The damage, if there was any, had been done.

Most weeks, I end up bringing something home from my parents’ house. This has become kind of the fun part — you never know what it might be (especially if I’m making progress cleaning out the kitchen). For a long time, it was garden hose. My Dad had an astonishing amount of garden hose stored who knows where, which he parceled out to me in 25′ lengths over a period of about 6 months. Aaron and I were pleased at first, because our own hoses were wearing out, and Dad’s arrived just in time to save us buying new ones. As more hose appeared week after week after week, we went from delighted to baffled to mildly inconvenienced to actively trying to pawn it off on our lovely neighbors, who are enthusiastic gardeners who know other enthusiastic gardeners and seem to find homes for such things.

There have also been countless little cardboard boxes filled with tiny things about which Dad says, hopefully, “maybe Aaron can use these?” Fittings and connectors and adapters and washers and bearings and screws… the detritus of a lifetime’s puttering around a workbench. Aaron, fortunately, is just the guy to sort through all this stuff and put a lot of it to use. To say he’s handy is the understatement of the century. To say he’s frugal is also inadequate. Best, though, and what makes me proudest to be married to him, is that he understands. He makes a point to tell Dad when one of the little thingamajigs has served some critical function without which we would all have been lost for sure. This makes my Dad very, very happy. We are making those moments happen whenever we can.

Today’s haul included a Canon printer/scanner/fax machine, which Mom says was “broken.” As near as I can tell, whenever Mom’s computer stuff doesn’t work for any reason, her “computer guy” advises her to buy new stuff, and she does. All I ask is that she not give her computer guy the old stuff, because often there is nothing whatsoever wrong with it. I fully expect the Canon to be humming away productively in our home office as soon as I plug it in. That would be cool.

I also brought home open containers of All Bran cereal from the year 2000, instant coffee from 2009, and Quaker oats from 2003. It was Josie’s turn to take out the compost, and she was not thrilled.

And they’re off.

The girls just left for school.

Robin goes first, about 7:30. Packing up her things, she was talking about an art project she’s working on at school, a watercolor painting. She was telling me about how she experimented with different dry/wet brush techniques and how they affected the intensity of the colors she’s using and how she did something that she imagined would have a particular effect but it didn’t, instead it made some of the colors look sad, which isn’t a bad thing, it’s actually kind of cool, it’s just not what she thought she was after, but now that the painting has that look, she’s actually happy about it because it gives her a more complicated feeling when she looks at it. In real life, that sentence went on for probably 12 minutes and ended in the front yard with “…and I should probably stop talking now BYE!”

Josie leaves later, especially if the weather’s good for walking — the way her bus route is, it takes longer to ride the bus than to walk the mile to school. Today, she’s walking. She put on raincoat with hood up, rain boots with pants tucked into them. I looked outside at the sunshine. Looked back at her. “I don’t care!” she said. Okey dokey, kid. Off ya go.