What to do about anger?

I can’t bear to go through all the details of yesterday’s phone call to Mom. Suffice to say that it contained all the usual elements:

  • She was still asleep when I called in late morning.
  • She’d just woken up when I called again at noon.
  • She said back pain kept her up all night.
  • She didn’t know what day it is, and didn’t remember when I told her. Not the first time, not the 8th.
  • She was confused by the number of pills in her box, reporting 4 when there ought to have been 6 1/2. She said today’s compartment was empty, then said it did have pills in it, but not enough. She asked why Wednesday has no pills at all and what will she do then, not remembering that I’ll be back to refill the box. This exchange was repeated at least four times.

In a new twist, she took my Dad’s pills instead of her own, even though her pill box is bright purple, chosen specifically to be very distinct from Dad’s. At least that explains there only being 4 pills. (Fortunately Dad’s were only supplements; he keeps the important stuff separate.) Then she realized her error and took her own, of which there were 6 1/2, as I’d been saying all along (this is now 45 minutes into the call). She said she had been confused and in a rush because I was coming. I was never coming, and had never said I was coming, and it wouldn’t have been a reason to rush, in any case.

This is what dementia sounds like. Nothing she says can be trusted to have any consistent or correlative relationship to reality. When a normal person gets “confused,” they can be set straight. Oh, right, they’ll say. I was just confused. When a dementia patient is confused, talking them through it is like screwing yourself deeper and deeper into the marsh mud at low tide. Then the tide comes in.

All this happened while Robin and I were on the way from shopping to my friend Jolene’s house. We had the Corolla, because Aaron has “my” minivan up in New Hampshire for the weekend. I hate this reliable little car with the intensity of a thousand suns. It’s ugly, uncomfortable, cramped, loud, dirty (Aaron cares much less about keeping it clean than I do), and lacks Bluetooth. The minivan is not a luxury vehicle by any means, but neither is it any of those things, and Bluetooth makes phone calls so much safer and easier.

Robin and I had had an unsuccessful time shopping and were dashing back to pick up Jolene’s son, who’d be spending the afternoon at our house while she worked. I was cranky about the shopping trip. I was cranky about the car. I was cranky about having agreed to have a friend over. I had a headache and the beginnings of cramps. And then I had this hour-long conversation which made no fucking sense, and which, if I could have typed out a transcript, you would not even believe.

When we signed off, I screamed — screamed! — in frustration. Poor Robin. I told her that if I ever begin to do this kind of thing to her, that she should kill me. That, well, ok, obviously she could not be expected to kill me, but she should put me in a home and then move as far away as fucking possible and never look back. I will not allow her life to be sucked up by this kind of thing. I will not allow it. I will NOT.

It was at about that point that I realized my phone had not, in fact, hung up. I had thrown it into the passenger foot well when I said good-bye, but hadn’t disconnected. It is possible that my Dad–it was he on the phone at the end of the conversation–heard my whole poisonous, insane, horrible rant.

I understand that dementia is not my mother’s fault. I understand that being angry about it is normal (and so does Robin. She is a tremendous comfort). I try to keep anger about her illness from becoming anger at her for not being able to think and anger at my Dad for not being more managerial about it (he is blind, yes, but he can think, and he knows what fucking day it is, and he could help with the medicine thing).

It can feel like a lot of anger, which has never been my strong suit.

We got to Jolene’s house, and she asked how I was, and for once, I didn’t turn back the attention and say “fine, you?” I just laid it out. Empty. I’m running on empty. My parents have sucked me dry today and I have nothing left except feeling angry all the time. She listened, and she helped, and it was so good to have a friend in that moment that the stupid aggravations evaporated and the serious issues receded.

Having Josh over was fun. He and the girls played Clue, had a soccer ball punting contest in the backyard, played Wii, and watched Sherlock. Meanwhile I called my parents again, prepared to face their reaction to what they might have overheard earlier. They never mentioned it, and nothing in their demeanor suggested they heard any of it. Jolene said they had probably just put their phone right down after saying good-bye. If they heard anything at all it would only have been car noise from where my phone had lain on the floor. I’m going to assume, with relief, that she’s right.

After Jolene finished work, we all went out to dinner and talked about other things. My friends are terrific, and my girls are terrific, and I’m feeling better.

I’m still wondering what people do with their anger, though. I’m open to suggestions.

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!

 

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.

In which Dad has a mini-stroke, and we go to the hospital.

We had a bit of Emergency Room excitement in the family last Saturday.

My brother Rick was up for a visit, and we were with friends at a comedy night to benefit the terrific After Prom event that the high school PTA puts on here in Sandwich. The comedian had just wrapped up his set of relatable, parent-friendly jokes and I was just about to enjoy a rare second drink when my phone buzzed: Mom and Dad. I missed the call but hustled out to catch the voicemail, by which time Robin, my 12 year-old, was rapid-fire texting from home:

u need 2 call grandma

she thinks grandad had stroke

he can’t talk and can’t get up

i don’t know what to do

i told her call ambulance

I called Mom and we got the ambulance on its way. Headed back into the building and signaled Rick we had to leave immediately – some quick words to friends, and we were off. Called Robin to say we’d be home late, and that she was so, so right and smart for telling Grandma to call 911. (My god, I’m proud of that kid. She took a frightening call, but she’s as level-headed as any grownup and significantly more so than her poor Grandma.)

When we caught up with Dad at the hospital, his symptoms had somewhat abated. He had tests, and we waited around, unable to keep our eyes open, unable to sleep. Saturday night in the emergency room is eventful. I couldn’t help wondering what was up with the terrified young couple clinging to each other in the space next to Dad’s. Then there was an urgent call for Narcan.

At some point, my mother, fed up of waiting for news and getting ready to start snapping at nurses and aides, turned to Rick and said “this is the worst part.” “No, Mom,” he said. “The worst part is that Dad is suffering.” I wish I could say it is dementia that makes her lose perspective, but her own status has always been front and center for her.

Eventually Dad was admitted for observation and further testing. We returned Mom home and got to bed about 4:00 Sunday morning.

Dad spent a couple days being examined. It is especially frustrating for him to be in hospital, because he is almost totally blind, and his hearing isn’t great. I’ve observed over the years that there are some people who intuitively do well interacting with a blind person, and many more that don’t seem to have a sense of how to be helpful (or an inclination to be). The proportion appears to be about the same among nurses as in the general population. I’m always very grateful when someone is assigned to him who really understands that activities need to be narrated, and clearly, because it’s so frustrating for him to know something’s happening around him and not be told what it is. That said, everyone was pretty great this time around.

Discharge day was sort of a comedy of errors. The hospital had lost his pants, which had somehow never made it up from the ER. I called Mom, who by noon had bothered neither to dress nor have breakfast, so couldn’t leave to come get him for at least an hour later than we’d hoped. His pants turned up and we waited for her. Then she drained her car battery to zero by sitting at the wrong hospital entrance for another hour with everything running but the engine (where was her cell phone? at home, on the counter).

Anyway, he’s home again. It turns out that neither the CT scan nor the MRI showed evidence of stroke; yet, classic stroke symptoms did occur. Doctors conclude that he likely had a “mini-stroke,” but that even so, there’s nothing different that would be recommended medically to address it. I wish I could say he’s himself again, but whatever this episode was has taken a toll. He seems disoriented and foggy and confused.

On the other hand, he has resumed his obsession with light bulbs, so maybe all is not lost.