Sunday, April 11, 2010

Letter to my parents

Hi--it's 10:53pm and I think only The Bug and I are still awake. It's been a long day.

The Ups:
The Baby successfully used his potty for the second day in a row today, hurray! Both boys got haircuts and look good. The Baby actually got a real "little boy" short haircut that took three times as long as the Bug's trim, and looks three times better. I'll send pics at some point.

Hugh, who definitely has "sundowning syndrome," let Kathleen help him get into his pyjamas, which I've had to do the past few nights.Not having to help was very nice, for all of us.

The downs:
Kathleen's just fed up. Hugh keeps saying to her, "okay, come on, let's go", which Mike and I have figured out means that he wants to go outside to work, and he wants you to go with him. She always assumes he means "let's go somewhere else, let's go home". Her reaction is "NO HUGH. We're not going anywhere, we're staying HERE" and he replies, "Oh, okay, well, let's go" because he just wants to know?

But I let him take me "to go" this evening and while the first ten times he ended up not knowing where he was going, or what he was doing, eventually, with the rhythm of "yes, let's go", he would go into the garage and move boxes and crap around. There's a big huge plastic storage box out on top of the barbeque right now, and another one in the driveway, and everything in the garage is all moved around, and some of it for the better.

She's so persistent in what she wants, and what's bugging her that she can't realize that she's a broken record too. He says, "Okay, come on, let's go." and she replies, "No, come sit down next to me." Over and over and over. The last thing he wants to do is sit. He needs to be getting out there and working. He gets frustrated. She gets frayed. So then she wants to give him so pill--Xanax, or haldol, or a pain pill, just something to knock him out, but I think sometimes it makes him worse.

Tonight, I was making dinner, and I would go out and help him when he needed me to, so Kathleen could get a break and watch a movie with Mike and have a cocktail.  I'd go move a box, and then tell Hugh to go around the corner and check out the wood, and I'd catch up with him...then he'd come get me in five minutes.  I'd get about five minutes in the kitchen, but Kathleen was getting fifteen to twenty minutes of peace at a time.

Eventually, it started to rain harder, and his hands got colder, and he was getting winded because he'd decided to dig up big blocks of concrete from god knows where. So I brought him back inside and made a show of taking off my shoes and saying I couldn't go out again because of that. Then, I alternated from talking about shoes, and the people in the other room who were waiting for dinner, and that I had to stay to finish dinner. Sure, he kept asking and telling me to come with him, and telling me to put my shoes on, and saying that he didn't want dinner, and let's go, come on, and he thought I was his wife, but it was okay. He was in the kitchen. I was making dinner. It didn't bother me, and he wasn't getting upset.

But it bugged Kathleen that he kept saying the same things to me, over and over, so she came in and told him to sit on the couch next to her. And just like that, the spell was broken. He'd forgotten all about me. And started saying the same exact Kathleen. Who, within five minutes was yelling at him to shut up.

The Baby has quickly learned that Hugh freaks him out. Hugh wants to grab his arm and take him somewhere. Hugh gets annoyed if The Baby's hands are messy from finger painting. Hugh tells him to be quiet when he's playing. The Baby gives Hugh a wide berth now...which I think is a good thing, even though it's sad.

You know that phrase that Mom used to say to describe people having a fun time, full of wild abandonment? "It's life with the lid off!"

That's how it feels. Mike and Kathleen are sleeping well tonight as I think they got pretty well plowed. And I completely understand.

Okay--this is probably way more than you wanted or needed to know. I'm off to knit a bit (I'm working on a baby sweater for a friend's daughter), and then brush my teeth.

I'll call you Wednesday/Thursday.

Saturday, April 10, 2010

The Cost of Care

So here's the thing: no one can afford the care Hugh needs.

He needs full-time, professional care. Compassionate. Trained. Licensed. Specialized. Patient. Not here. Not his wife.

None of us here know how his brain is firing. We don't know why he'll react lucidly one moment, and quite literally babble the next. We don't know if he'll hurt someone, or himself. But we do know that this craziness has taken its toll on my mother-in-law, who looks five years older than she did five months ago.

I took a sick day on Thursday and checked out care facilities. The most expensive one was $4700+. The cheapest one was the one we're hoping to get him into. For $2,895 he'll get a shared room, round-the-clock care, and a nice garden to walk in in Dixon.

That is a huge amount of money. She's been trying to sell her house for about two years--and since it was way over-priced, and in the boonies, it didn't sell. She's brought the price down recently, so if you're looking for a well-built home in the foothills of the Sierra Nevada, here's a bargain (I bet you could knock a bunch of $$ off it).

What have I learned from all of this? If I make it to age 50 I need to invest in Long Term Care Insurance, because the VA only kincks in up to $1,500, Medicare/Medicaid chips in nada. What will she do if she doesn't sell that damn house?

Red letter day

It's been an up and down day for everyone.

Kathleen, my mother-in-law, had hoped to receive checks from Hugh's two son's in the mail today. These checks will cover the first two months of his stay in an Alzheimers/Dementia residence facility, which cost about $3,000 a month (and this is the cheap one with a shared room). The checks didn't arrive. She's at the end of her rope, so this was devastatingly disappointing news.

For me, it was a great day. The Baby finally peed in his potty. He turns three at the end of July and I had started to wonder if he would have to go into Depends if he didn't start using the damn thing soon. The cheesy Potty Training DVD from Target might have been worth the $12.99 I paid for it.

Then again, there's the flip side of the story. Earlier in the day I had to stop Hugh from peeing in the Baby's room--something new. Tonight he refused to go to the bathroom by himself. Kathleen asked me if I had rubber sheets for their bed. Unfortunately, I don't, and their bed is also our living room futon/couch.

No napkin eating tonight. Hugh slept through his dinner, and later I followed him around the house feeding him bites of cherry danish off a fork. He did move furniture and area rugs all over the place; try to pick the flowers off the couch, and was really bothered by the grout between the bathroom tiles.

The Baby had a melt-down right before naptime and screamed and cried his way to bed. Later on he ran circles around Hugh, who told him "Oh, be quiet!"

I'm quite looking forward to everyone going to bed, having a big glass of wine, and watching a cheery show like Mad Men.

Times they are a-changing

I'm turning 40 this year. I'm a working mom with two boys--a 13-year old and a two-and-a-halfer, and my husband is a stay-at-home dad. Things were crazy enough with the teenager and the toddler, but as of this week, we've added grandparents to the mix.

Yes, my in-laws have moved in to our small, ranch house. My mother-in-law, bless her 77-year old heart, has been caring for her husband who has dementia. My father-in-law, well, he's a sweet guy. But to put it bluntly--he's demented.

It's time to get him more care. It's time for her to get support and help. She called us hysterically on Tuesday after she'd just driven the 2.5 hours home from visiting for Easter. She couldn't handle it any more, she's at her wit's end. So they moved in with us on Wednesday.

Hugh does crazy stuff. Last night he was eating his napkin. He wanted scissors to cut up his shoes. He holds the baby's arm and won't let go.  He got undressed in the living room at 4pm. "It's a full moon tonight!" cried my husband.

I don't know how she managed for four long years. But she did. And I can too.

I've snuck away for 45 minutes while the baby napped, but I need to go relieve Katie for a bit. Wish me luck.