Adventures with Toots and Noodles

Today

1. I spent all day thinking about my dad, and what it was like at his deathbed.  It was OK at the time, knowing we were doing what he wanted.   Now, it is not so OK.  I keep replaying it in my head. 

2. Noodles is truly a wonder boy.  We spent time talking tonight about the high-functioning autistic kid in his before-school care program, and how Noodles is helping hiim by letting him play and interact with the other boys.

3. Again, Toots sounded like our sweet litttle girl tonight.  It seemed as if she had a good day.  She joined the choir.  Oh, I pray and pray that WP turns out to be a positive, learning place for her. 

4. I've had far too many drinks involvingg rum and Coke.   I need to go to bed.

Toots had a bad day

1. Refused to get out of bed when called.

2. Resisted when staff members tried to get her out of bed.

3. Assaulted a staff person and had to be restrained, which has resulted in a CPS investigation.

4. Was moved to another cottage, to separate her from the staffer she went after.

5. Met with our school district's coordinator of out-of-district placements, who drove up to see her and the other girl from our town.  Talked about the bad day. 

6. Sounded like our sweet young girl when she was permitted to call tonight. 

With the help of the art therapist, she made me two squishy, soft little pillows.  They arrived yesterday in the mail.  I slept hugging them. 

What contradictions there are. 

Weekend update

Oh, right, Toots.  What’s up with Toots.

Well, she did not do so well during the wake and funeral.  Now, she has been to wakes before.  She didn’t scream, or cry, or faint.  But she did do a lot of her little poisonous “attention must be paid to me and me alone, and if you don't immediately do what I want you don't love me and I hate you” things.  I don't have the heart to go into all of them.  She got away with behaviors we wouldn't normally tolerate.  I know Lew was just trying to help me get through the funeral and not let her disrupt things too insanely.

So he took her back upstate to WP on Thursday, the 15th.  On Thanksgiving, Lew, Noodles and I drove up to visit, take her out to dinner, and stay overnight to see her again on Friday morning. 

Thanksgiving dinner was not an utter disaster, but it wasn't good.  We had done some research, and made reservations at what turned out to be an excellent restaurant.  As soon as we were seated, Toots read the table card which announced that restaurant t-shirts were available for $25.  She instantly said she wanted one.  (No matter where, no matter what, she will find SOMETHING to demand.  And, of course, this feeds into the "you must do what I want immediately or you don't love me" world view.)  I said--lightly, I thought--"No, Toots, we're not going to spend $25 on a t-shirt."  From there, things went from bad to worse.  Although Lew and I had hoped to relax and enjoy (and the food was really terrific), she rapidly gobbled her way through the courses (the dinner was served buffet-style). I was putting some vegetables on my plate when she headed for the desserts.  I said "Toots, just one dessert, honey."  (She is heavier than ever, and I get increasingly worried about the prospect of diabetes, as her home pediatrician warned.)  That did it.  Thunderclouds gathered in her face, and were ready to break.  Lew took her outside and talked with her for a long time.  Later, he told me her major theme was how much she missed her birthmother.  (More to come on that, in future posts.)  They came back inside, and he needed to go to the men's room.  She started playing with the sugar bowl--picked up a packet, pretended to open it and pour the sugar into her mouth.  I said, "Toots, don't do that, it's disgusting."  "DON'T START IN ON ME, MOM!! IT'S NOT DISGUSTING IF I'M NOT REALLY DOING IT!!"  Etc., etc.  She proceeded to take all the packets out of the bowl, say "I'm taking all these back with me", hold them in her hand where I couldn't see, pour milk into the sugar bowl, and replace the packets, laughing and smiling all the while.  Lew came back to the table, and we paid the check and got out of there as quickly as possible.  The hostess looked somewhat puzzled.  I was able to say to her quietly, "Our daughter is mentally ill.  You need to check the sugar bowl on our table, because she poured liquid into it." 

Back we drove to WP.  She went off to her cottage, and Lew and I had a fortunate chance to spend some time talking privately with her worker--the young lady was on Thanksgiving duty because she is fairly new.  We were able to clue her in on much of Toots' behavior, and told her some things she wasn't aware of (like the food issues). 

Friday morning, we went back to WP, as we hoped to spend some time with Toots walking the grounds and admiring the Hudson River view.  We waited in the administrator's office.  Another worker walked Toots over from the cottage.  She wouldn't come into the room where we were sitting.  When she finally did, she wouldn't look at us or speak to us.  As we learned in parent training, Lew said quietly, "Toots, this is your warning."  He made it clear that we expected her to be civil.  When she still wouldn't acknowledge us, he looked at me and said, "Shall we go?"  I nodded, and we left.  As we walked out, I said, "Toots, we love you.  Be good."  While we were getting into the car, she came out with the worker, crying bitterly that she hadn't even had a chance to say goodbye to her brother.  After we'd driven a few miles, Lew stopped the car and asked Noodles if he wanted to go back to give her a kiss.  Noodles said no.  We continued on down the thruway and home.

It was very, very difficult to walk out and not turn back.  But when Toots is in this state of mind she is all about controlling us, in every situation.  She wants us to dance to her tune.  We are not her slaves, and we were not going to grovel, or beg her to talk to us.   

She may be seriously disturbed, with a warped worldview, but she knows the difference between right and wrong behavior.  As I said, she got away with some stuff during the funeral  in order to keep the peace, but there are behaviors we cannot accept. 

I expect that we will be having some discussions with the WP staff this week.  They may not agree with our handling of the situation, but they have known her for only a few weeks.  After seven years, we are well acquainted with her M.O.

Lew and I are troubled in mind and sick at heart as to how to handle Christmas. 

Giving

First, a nice story.

My dad HATED losing both physical and mental capacity.  He did not enjoy physical therapy.  When he was fitted for leg braces, he threw them across the room.  He did not want to use his cane or a walker.

A few weeks before his death, at the therapist's advice, my mom bought him a beautiful, top of the line, rolling walker.  Fold-down seat, hand brakes, carrying basket, the whole deal, in shiny blue. 

It was used twice.  Once, he walked inside the house with the PT, and once he took a short walk out the front door.  He walked as far as the mailbox and back.  And that was it.

After the funeral, I brought it home with me.  As I work with disabled people, we figured I could find somebody who could use it.  At last week's staff meeting, I mentioned this to my co-workers.  One co-worker, Jen,  came up to me afterwards and said that her disabled sister-in-law needed a new walker.  I brought it to work the next day.  Jen said that it was perfect, and we put it in her car to take home.

Now, Jen had intimated that the family could not afford a walker like this one.  She told me that, when Cathy, the sister-in-law, saw it, her eyes got big and she said, "Is that for ME?"  After a little practice, she was walking well with it, and she is ecstatic. 

I'm happy about this.  My mom is happy.  I KNOW my dad is happy too.

Maybe later today I'll be able to talk about Toots and the ways in which she and we are not happy. 

Back from a trip

Lew, Noodles and I drove upstate yesterday to take Toots out for Thanksgiving dinner.

We are home now.

It was not a warm and happy family time.

More later. 

Little things that catch a person unaware

When I was a very small girl, my dad worked for Hess Oil.  Now, I am not sure how national the company has gone by now, but here in the Northeast Hess has lots of gas stations, with a green and white logo which has not changed in my lifetime.  When my dad worked there, it was still a small company.  Dad claimed that, at that time, Leon Hess was still opening all the mail.  Anyway, the company grew and grew, and Leon Hess bought a pro football team (the New York Jets) and various other things, and became a famous rich person. 

But my dad didn't stay there that long.  He had a good position--manager of trucking operations--but he wanted to do something on his own.  Enterprising guy that he was, he and a partner left Hess (I think I was about seven), to start a tank cleaning business.  My dad owned other businesses over the years, mostly in the maintenance end of the oil industry (you know all those refineries and ginormous tanks you see along the Jersey Turnpike?  They have to be cleaned out!  Frequently!).  Although he never got to the level of owning football players, he was pretty successful, and those tank cleaning trucks paid for a lot of the nice things in my life. 

Back to Hess.  It has been a tradition, for many many years, that every holiday season the company sells a toy truck, in a different (some fairly far-out) design.  A nice line extension for the brand, a passion for collectors, and a cool Christmas present for my son. 

ANYWAY.

I went food shopping yesterday afternoon, 'cause we were out of practically everything.  I felt fine.  On the way home, a radio commercial came on for this year's Hess truck.  Falsetto voices singing, "It's Christmas this year....the Hess truck's here!"

I lost it.   

Tell me this is the kind of thing that happens. 

Life goes on, as he would want it to

I went back to work yesterday, and only got weepy a few times.  Once was at 3 pm, at about the time last Friday when the doctors took out the ventilator.  My co-workers were very sympathetic, and expressed admiration of the old pictures of my handsome dad.

In case anyone's wondering, yes, Toots did go with us to the funeral.  Lew drove up to get her, then we all drove back down to New Jersey, then we drove home, then he drove her back to WP.  The poor, dear man did something like 720 miles of driving this week (which is a LOT for him). 

No, she did not behave well.  Especially the morning of the funeral.  I'm not up to talking about it.  Maybe later.

Now, it's Saturday, and lots to do as always.  Laundry all over the place.  Suitcases to put away.  A new dishwasher to go buy.  A karate tournament for Noodles, tomorrow.  We continue, with mixed sorrow and peace in our hearts. 

If you would like to help Deborah Hospital

Deborah Heart and Lung Center is involved in a contest to win a new MRI machine.  It is a well-known hospital with a long history, where no one receives a bill.  They accept the insurance coverage of patients with insurance.  Patients without insurance are treated at no charge.  If you wish to place a vote f0r this hospital, here is the link:Win an MRI.

Thanks. 

Gus II

Was this a handsome guy, or what?

High school graduation, 1948

Junior year college, 1952

Senior year college, 1953

How could my mom help falling for him?  A good-looking, smart, football hero?

For kindnesses never to be forgotten

1. The MICU staff at Deborah Heart and Lung Center, Browns Mills, New Jersey

2. D'Elia Funeral Home, Lakewood, New Jersey

3. St. Mary of the Lake Church, Lakewood, New Jersey

With the help of these good people, we were able to give my dad a dignified death and a beautiful, memorable Mass and entombment.  We are sad, but content and at peace knowing we were able to carry out his wishes.