Fun on a Couch

I walked into the living to the serene scene of Grace laying on the couch looking at the birds out the window. She smiled at me as I approached her. I touched her head gently, said hello and asked how she was doing. She brightened up, looked at me, smiled and said proudly, "I'm having a poop."

It's hard to know what to say. I don't think Emily Post covers this in her guide to manners. Here are some ideas.

• How nice?
• Do you want some privacy?
• Ever thought of using the toilet?
• Doesn't smell too bad.....yet.
• Thanks for keeping me informed.

Witnessing this, Mandy wondered out loud if it was possible to even do that comfortably while laying on your side. I'd have to agree.

The Outing

I heard a noise and looked out my window. Alicia is AMAZING. She actually got Grace to go outside.

Slip Sliding Away

This morning I came downstairs to my mother in the bathroom off the kitchen. This is mildly refreshing as she hasn’t been in that bathroom for several weeks. She wears her bathroom. The current caregivers are ambitious and actually try to put her on the toilet now and then. They also try to patiently teach her to tell them when she has to urinate, but without much luck. Memory is a key element in education.

Her slide is elusive. Certain topics elude her; others stay with her. As she was done with the toilet, I could hear the hand washing discussion. She didn’t feel it was necessary since she didn’t touch anything. Actually she didn’t remember touching anything. Same thing to her.

Leaving the bathroom, her mind finds a moment of clarity as she asks the caregiver if she should turn right or left. The clarity was brief. The next question to the caregiver was about me.

“How long have I known her?”

The caregive answered patiently. “All her life.”

Ramming Speed

Note to the caregiver agency.....

Just last month I replaced the dishwasher and they still don't know how to work it. Today I have a new washer machine to replace one that was not new, but too young to have mysteriously died.
The delivery people specifically instructed D to not run it until the manual was read; that this washer machine was tricky. D told E and E admits to hearing this. However, E completely ignored instructions and threw a load in. When I told her about this, she very sarcastically said "OH MY GOD" like I was making a big deal out of a little thing.

From this moment forward, I do not want any of your employees to use any appliances expect the blender, stove and refrigerator. I don't even want them using the disposal as I came home one day to find one of the caregivers jamming and banging a brush down it. They can through garbage out and wash dishes by hand. I have also had to pick out broken dishes from the old replaced dishwasher. That machine died because the soap dish had been chronically overloaded.

I will process Grace's laundry and leave it to them to sort. I don't want to have to keep replacing pricey appliance due to abuse.

PS... when I got home, E would not look at me nor speak to me. Guess she's mad. What she didn't know is that I prefer the silence.

Red Hair

There isn't much these days on which Grace and I connect. One thing does come to mind; my hair color. She looks at me with this wistful smile and says, "I like your hair color."

I shake my head to flip around my hair and say, "What do you mean? This is my natural color!"

She laughs.

Oddly this is the only thing I can do to make her laugh. She used to laugh a lot, but if my 'red' hair can bring a smile, then .. cool.

For all other events in her life, she is sarcastic, impatient and crabby. She tells the caregiver she wants something to eat and if they aren't back in 15 seconds, the tirade begins. She yells and tells them to hurry up. If she didn't have Alzheimer's, you'd have to take her nastiness seriously. Now, I just walk away, or start to sing.. if you're happy and you know it....

How Can I Help

My adventures are less about Grace and more about living with caregivers. The interesting thing is that I was able to share my experiences with a woman taking care of her sister and the common experiences were quite striking.

Her caregiver also talks nonstop. I think there must be some circular breathing techniques that the caregivers are taught so they can spew words perpetually. It is a fascinating skill. I think they research what topics would bore me to death and then dwell on those.

They also have a sixth sense about what I want to do. My friend had the same experience. I am convinced she sits motionless next to Grace all day until I arrive. If I open the refrigerator, suddenly it is imperative that she get into it. If I get near the sink, she MUST rinse out a dish. If I put something in the dishwasher, she needs to add a dish to the rack. If I try to cook, she needs to use the stove AND needs to quiz me about what I am preparing as well as how it is being prepared. If I go into the laundry room... well, you get the picture. I try not to scream, but sometimes it's more than I can handle.

She is also trying to feed me. After being here a full year, she still does not understand that I'm a vegetarian. She also has not caught on that I have never accepted food from her ever... not even once. I was thinking of getting a t shirt made that simply said, "no, thank you."

I had to chuckle as I heard my friend describe how her caregiver just would not stop being involved in everything. It seems like such a little annoyance, but there is no place to hide; this is my home. I stagger home from work, some days, exhausted. I have had meetings back to back; had to think on my feet every minute while processing multiple projects and conversations at the same time. I want to have peace when I come home. Not a chance.

No rest for the weary

So I made the mistake of telling one of the caregivers that I didn’t mind if she napped while caring for Grace. I mean, Grace is sleeping. She is right there next to her, nod off. Partly this was motivated by my pity for the hours she spends at a rather boring task and part of it was to spare myself the agony of listening to her talk. The woman can talk while both exhaling and inhaling. I try to make mad dashes past her to avoid the engagement into her inane prattle. I can be polite for a while but then I’m just trying to focus enough to respond semi-appropriately and make sure my eyes are not rolling.

The sleeping is actually rather fascinating. I’ve never seen a horse sleep, but she can fall asleep in any position; including standing up. I have seen her stand at the counter, taking something out of a plastic bag. She starts to paw at the bag in a strange repetitive motion and sure enough, her eyes are closed. Her hands are still moving (and accomplishing nothing) but her eyes are shut. I just step around her quietly. Another time she was putting something in the microwave and it happened again. She has her head right at the open door, leaning over to place the item, but taking a bit too long. Her eyes are closed again.

Another favorite is to see her sit in a chair with the dog in her lap. She's out. One evening, I heard a strange thump in the bathroom. She had fallen asleep while on the toilet and hit the chest of drawers. I have also caught her with her head in the refrigerator, searching for divine inspiration with her eyes closed.

When she is in the kitchen sleeping at the counter (yes on her feet), I just work around her as if she were awake and doing something that required her presence in the kitchen. Sometimes that is awkward, but waking up a person who is asleep while standing is also awkward.

Grace notices this too. She yells at her to wake up. Then she denies it.

"I'm not sleeping, Grace."
"I'm just looking at this."
"I'm just closing my eyes."
"I'm only looking down."

Fascinating.

House Sitter

I came home from work to be greeted by my mother, "Oh, what a surprise to see you!"

Me: "Oh? Why?"

Grace: "Why are you here?"

Me: "I live here?"

Grace: "No, you don't"

Me: "Oh, I see. What are you doing here?"

Grace: "I'm house sitting."

Me: "Oh, well, uh , right, uh.... can I help?"

Home Sweet Home

Recently she has been convinced there is a plot and I am the master of the deception. For some reason, she remembers a neighbor from the house where I grew up. She has decided that I have purchased their house and moved us all there. I’m not sure how, even if this were true, that this would be such a horrible plot, but she is very unhappy about it.
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She has asked a friend, as he was leaving, if he was going her way. He took notice and asked why. She wanted him to take her home. When asked where that is, she turned to me and said that I knew. When I asked, she got very angry and insisted that I knew. I tried to tell her that she lived here now. This just seemed to make her sad.
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The caregiver told me one morning she woke up convinced she was in the wrong house and that she really lived two doors to the east. This is interesting as it has reoccured and she has asked me also why we are in this house, when we live two doors (followed by a gesture to the east). When I told her of the names of the people that lived in that house, she then pointed west. Normally I try to go along with anything she thinks is true, but I would be unable to follow through with this and actually go to this house and move in (though it is a nicer house). So, I had to tell her the names of the people living there too.
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Occasionally she must think she is back in her childhood home in Evanston. She will tell us that her brother is just upstairs. We don't argue with that. Though he died several years ago, we just tell her he will be down when he is done with what he is doing.
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One morning she did not want to leave her room. She believed it was her apartment and the rest of the house was the lobby. We convinced her to come have breakfast in the lobby.
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She has asked me several times why I am here and if I live here. When I tell her that I do, she finds this hard to believe. I tell her it is my house and she says that I am "spoofing"her. She asked me when I moved her and she can't believe it was almost ten years ago.
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Home is an important place. Is a place you can relax and wear those sweat pants with the holes in them, walk around with no makeup and in the matching grungy tee shirt and bunny slippers.

What if you had no home?

And worse than being homeless, you never recognized where you were?

How terrifying would that be?

Shadows of the Past

I know she is not the woman she was. She needs help to move from her bed to the couch. She lays on the couch eating chocolate ice cream and arguing with her care givers. Even pictures and stories of just a year ago, surprise me. After all, she was driving herself not so long ago. There are pictures of her at church just two Christmases ago.

The Grace I know always says hello. She always calls me by name. She always has a smile for me. I can tell that she was raised with a certain culture, a certain class. A class that she has passed on to her children. Sure she asks many of the same questions over and she asks me to repeat what I've said. She asks what I'm doing and where I'm going. She asks how I know Edie. Yes, we work together. I can tell Grace loves her by the way she smiles when she hears Edie's name.

The Grace I know has a sense of humor. She knows when I'm kidding. She says "get out of here," and smiles. Sometimes, though, she says "get out of here" when she has lost her patience. Like when she has lost her patience with the care giver for not understanding what she's saying.

Her eyesight is amazing. She can recognize me clear across the house. If she doesn't call to me, she waves.

I know the Grace I see and interact with is not the Grace her children and her grand children knew, but I see shadows of the past. I see the class and culture she has passed on, reflected in them. I see impeccable manners and a sense of humor. I see their heritage. And, believe it or not, I see an understanding and a love.

The Shrinking World

Today she woke up and was reluctant to leave her room. After months of not wanted to stay in her room, now she has to be coaxed to leave. Her room has become her apartment; the rest of the house, the lobby.

Her brain seems to take her on trips. One day it was a beautiful wedding. Another she is back living in her house in Evanston. Today she has an apartment. I wonder when that was in her life. Throughout a single day, the days change. Yesterday it was Sunday, Monday AND Thursday. She seems to have enough left to know that it cannot be all those days at once, but her disorientation is becoming more the rule than the exception.

I woke up early to take out the dogs. I stopped in to check on her. At first she did not know me and almost panicked. WHO ARE YOU?!?!?! Then she wanted to know why I was getting back so late (yeah, I always go out in my pajamas).

The day is coming soon that she will not be able to communicate. I have trouble understanding her and asking her to repeat is risky. Repeating requires memory and often she cannot repeat what she can’t remember.

There is snow everywhere, but it surprises her every time we bring it up She isn’t as cold as she has been either. We still wrap her up and try to keep her warm, but she doesn’t ask and complain about it. She also does not appear to be cold.

When my father was nearing the end, she used to say, “He’s having a terrible death.”

I think she is too.

Fuzzy

Grace is fading. She sleeps a lot and even awake does not sit up. She is much more docile and less argumentative. Time has no meaning for her. I left for four days and instead of being lectured about my absence, she greeted me as if I stepped out to walk the dog.

She asks for the wheelchair. Before she resisted and refused. She sits slouching at the table while the caregiver coaxes her to eat with spoonfuls of pureed food. All the while she asks if she can go lay down again.

She wears a diaper and accepts it as if she it is perfectly normal. She doesn't even mind sitting in a soiled diaper so we have to be vigilant detecting any 'events.'

Her world is softening. She is in a fuzz. At times she presses for me to sit with her and hangs on to my arm as if she were falling. It is amazing what a grip can be produced by a woman who maybe weighs 90 pounds.

I have called Hospice. I expected to be told that it was too soon. Instead the intake coordinator was extremely supportive and stated that she was definitely a candidate. That very same day we received some additional equipment to help care for her and a nurse showed up to do an initial health evaluation. I feel good about having their help.

A Letter That Will Never Be Mailed

Dear Dad,

I miss you so much. I still think about you every day, think about your smile, your laugh, the way it felt when I put my arm in yours, my head on your shoulder…I remember the way you made me feel. You were so good to me. I hope I showed you how much I loved you and how much I appreciated you.

My girls miss you too. They talk about you and wish so hard you were here. They want to tell you what they are doing. You’d be so proud. They are such beautiful young women. Part of what they are today is because of the love and attention you showed them daily when they were small.

I’m doing my best to take care of Mom. She is so frail and confused, but she remembers you. She has a picture of you on the table where she sits. It’s getting harder and harder to understand her and she is having an equally hard time understanding her world, but she says something about you every day. She tells anyone who will listen what a wonderful husband she had. You blessed us all with your time here.

I love you so much.

Edie

EL EM EN OH PEEEEEEEEEEE

I love my daughters. I love them with every fiber of my soul. I feel what they feel. When they are happy, my heart sings. When they are sad, I fight the tears. I love the women they are becoming. I love listening to their stories of their days, the way they conquer their world, the way the come back fighting after the world conquers them.

I miss the little girls. I miss being able to solve all their problems. I miss being able to pick them up and hug them so tight their eyes bug.

So Grace is giving some of this back to me now. I have a little girl here. She is frightened and simple in her understanding of the world. She needs constant reassurance and can't make any decisions for herself.

This morning I came downstairs to see her already up and on the couch. I knew I had to check. Sure enough, she had wet the bed, her pants, the couch. Time to change diapers and throw everything in the wash. Not exactly the child I'd pick, but a child none the less. I told her we had to clean her up and she didn't understand why. I mean she already WENT to the 'bathroom' so why bother?

Since other caregivers have not been as diligent, I spent part of yesterday at a laundrymat washing the cushions. Through the miracle of garbage bags and duct tape, I covered the couch and placed another fabric cover over the whole couch (easier to wash). Mark down yet another use for duct tape. I just love duct tape; isn't that stuff great?!?

So explain to me how she can totally forget to use a toilet yet still be able to tie her shoes? Hm.

No place like home

As I tiptoed past Grace’s room this morning, trying to get ready for work, she called to me. I went into her room to be greeted by the same litany of questions.

“Is it time to get up?”
“Why are you up so early?”
“Where are you going?”

I keep reminding her that she is retired and ‘getting up’ is at her discretion.

She wanted to lay in bed still and I assured that was a good thing to do. She then told me that she had been at a wedding yesterday so she was a little tired. I asked her how it was and she said it was a beautiful ceremony.

No wedding.. she never left the house.

Earlier this week she woke up, was helped to her favorite couch where she looked up at me in distress…”Everything is so strange..”

I’m sure it is. If you can’t remember, you can’t get your bearings. I can’t even begin to understand how disconcerting and frightening that is. We go home everyday to be in a familiar place where we can locate everything but our car keys, generally. But if you can't remember your home, there is no place to go to get that feeling. Everyplace you go is strange and new. And if you can't remember completely who the people you live with are, then you are surrounded by strangers and acquaintances.

She wants to go home. We don't know where that is. She can't remember the place she lived just before this, but it was only for a couple years. Prior to that she lived at the same house for over 40 years. She can't remember that either. My memory doesn't go back much further. I can't find home for her.

Grace talks about her parents and she misses them. I wonder if that's the home she is looking for. I'll never know for sure.

As she gets weaker and weaker, she is losing interest in life. Sleep takes her away from the confusion of her leaky brain that tricks her daily. Home is getting closer. She will get there. Then she'll be happy. Home is with God.

Too much, too little

She’s made another slide. Two things; she hardly sits up ever and the more significant is forgetting names.

I noticed when my brother came over last she was unsure whether we were siblings and later unsure of his name. He brought his son and his granddaughters. Though they were visually entertaining for her, they were a mystery. Her memory extends past the names for them into the concept. If I explain who they are, she has two hurdles. The first is she can’t believe she has great grand children. Since that incredible fact that will not digest any easier than swallowed chewing gum, she cannot get hold of any of the other pieces of information that are key to relating to her visitors.

This morning she looked at me, said my name and then looked me and asked, “right?” That’s big.

Her fatigue is taking over too, though I vacillate between the physical and the mental cause. Her world is so disorganized and confusing that the mental effort it takes for her to just make sense out of people coming and going must be exhausting. I can see the look on her face as she closes her eyes to lay down. There isn’t the fatigue and relief that is common with finally getting to bed after a long day, it’s more of a pain of too much information to absorb. Closing her eyes cuts off the information and puts her in a place that is easier to take in. The expression is a combination of sadness, confusion and stress.

I don’t know what to do to help her. I can’t sit and explain because it only adds to the confusion. Her diminishing language skills compound with the cacophony of the day. My explanations only further confuse.

So what else can be done? Can I control the environment and slow the input? Is that really the right thing to do or is it even possible? She insists on her seat on the couch in a very busy part of the house. The activity seems to be at both times conforting and confusing.

So we continue to take it day by day. Her dog sits with her; her little angel. Her day whirls past her and when it’s too much, she just closes her eyes.

Communication

I keep my land line for the caregivers. In fact I had to change to a different plan (from the “I barely use the phone” to “ok, maybe I do from time to time”). The agency uses it as a way to verify their arrival and departure and calculate the time they spent here. When it rings, the rest of us stare at it just as someone from the 17^th century would. Why is it ringing? Who could that be? The number is unlisted and none of us give it out. Okay, I do when I’m asked for numbers when I buy something, but that’s only because I don’t want them bothering my cell number. Or if I’m forced by other’s land line paradigms and they MUST have our home number. I try to explain that no one answers it and there is no voice mail. Nope, the form says what it says, they don’t care if the data is useless, they MUST enter it.

We also do not have or keep a phone book. It is big and clunky and we have the internet. Does anyone actually use a phone book anymore? Most of the calls we make are to businesses or others’ cell numbers. The former can easily be found on the internet. The latter is certainly not in the phone book.

I understand that being a caregiver is not an exciting job. I understand that Grace is not one thrill after another. Grace sleeps, eats (barely), and asks the same questions over and over. However, when I got my last AT&T bill, I was in for a surprise; 22 calls to 411 costing over $30. In addition there were TONS of phone calls. One was almost four hours. FOUR HOURS. I talk a lot, my daughters talk a lot, but we are obviously merely rookies in the world of conversation. I took lecture classes in graduate school that were three hours and that included a break. I just can’t imagine.

I was also amazed that the battery on our phone lasted that long.

Notes to my daughters

In 2004, Grace and I took a train trip to New York. Rereading it, I see I left out the panic I saw in her periodically. It was the beginning of the slide.

March 21
Grandma and I had dinner in the dining car. It is very cool. We were seated with an interesting pair from Albany New York; a mother and son. Flossing was not a big pasttime for her as she had enough teeth missing where food could not possibly get trapped. This is good, because eating definately WAS a hobby. The mother was huge and in the booth there was not much room for her 30ish son. There were also strange growths on her face adding to her own special look. She goes to Chicago from Albany to the Cancer treatment centers in Zion and she raved about the medical care. She wore one rubber glove and complained a lot; a seasoned train rider with all the 'down' sides clearly explored. I felt sorry for her and wondered if she ever truly saw the magic in this adventure.

Tom drove us to Union Station. Mom was in awe with his exceptional navigational skills. For those of us not so gifted, they are amazing. My mother was able to pack all her needs in a suitcase that could fit in mine three times. This will just serve to be one of the many lessons I will learn. Every day makes me smarter.

We waited at a bar in Union Station where Mom and I imbided sinfully in Ginger Ales. Mom's sat undrunk. She was too nervous, checking for tickets several times. I suddenly realize that I have slipped unfairly into child behavior letting her saddle all the responsibility of the trip.
I remember being a kid with my parents on train trips. My biggest concern was how the heck I was going to get to sleep on the train as I was terrible at sleeping anywhere else than on in my own bed. Those days are delicious memories. Now it's time to take care of her.

Tom took us to the waiting room and was not allowed any further. I gave him a big hug, thanked him and told him to take care of the 'kids' but I knew they would be pampered.

The walk down to the train was pretty long. Most riders are in coach and those cars are closest to the station. I dragged my huge bag and worried about my mother the whole way down to the car tucked just behind the engine. My mother's strength continued to amaze me and she hustled behind me complaining that I was moving too slow.

Our room was different from what I imagined; not the palace that we took one trip years ago. It is a cleverly designed space with two single seats facing each other. There is a toilet and a sink and a top bunk that will come down when the room is shared by two. My mom and I are directly across from each other. I realize at this point that my bag is HUGE and managing it will be part of this adventure. But I comforted myself saying that I travel so infrequently that my inexperience is worst enemy.

I spent most of the time in my mother's room. The attendent came by and knew the two names of the occupants and tries to guess who is who. He is wrong and I said to my mom, "See? I have an old person's name." I realizes immediately how mean that was to say but the attendent's embarrassment provides a distraction. My mom seems unbothered by the comment, but I think I'll apolize tomorrow anyway.

Jeph called during dinner. I can tell he is excited to have dinner with us in NYC. My mom says he wants to show me his office. This is interesting because he has never mentioned this to me
I love you guys very much and miss you so much it hurts. But I know you need to be where you are and know you will come home with wonderful stories to tell me.

March 22
The bed on the train was very comfortable, but the starts and stops woke me a lot. After the first part of the train trip being at night, I spent the first hour after I woke just looking out the window at rural New York. The snow in the area was still pretty impressive. It looked really cold. The frame houses were sprinkled here and there. The small towns we went through could fit twice in the distance from our house to Glenbrook South.

I got dressed, washed my face and put on my makeup. The only way I could see the mirror was by standing on the toilet (seat cover DOWN). I only got mascara on my noise once, but the thing that made me the most nervous was getting the contact lenses in while the train was moving.
Breakfast was served in the dining car, but I prefered the mango and kiwi that Tom cut up for me. I wondered how Sam handled the night with mommy missing.

Grandma woke up too late for breakfast and the attendant was nice enough to bring her pancakes. After breakfast she was tired and went back to her room to nap. I continued to watch upstate New York unfold as I knit and read.

As we got closer to Albany we started to follow the Hudson River. I counted six or seven tug boats pushing or pulling tankers and barges. I really wish I'd seen a map of this area and will have to make a point to do that before we take the train back.

We pulled into Penn Station about an hour later than scheduled. Amtrak has no reason to be on time. It is government subsidized. Why try too hard? We got off the train and finding the cab stand was a challenge. Unlike Union station, the actual word TAXI cannot be seen when you leave the platform. I did notice a teeny tiny sign that had a picture that (with a certain amount of imagination) could resemble cab. I followed them with my mom lagging behind more as a result of uncertainty and skepticism rather than fatigue. I kept looking back and smiling but it was not very effective. Once upstairs I asked at an information booth and was immediately pointed to the cab stand. It was more of a walk than I would like to have subjected my mother to, but it had to be done. Remember, AMTRAK.... they don't care a whole lot and even if they did they don't have the money to show it. My mom was cold at the cab stand and I made a mental note to give her my long undies when we get to the hotel.

While waiting for the cab, I watched my mom freeze. Two fire trucks passed and I thought of 9/11. I got teary.

The cab driver took us through uptown. It really looks a lot like Chicago except I don't know where I am. I quietly give thanks for lower Wacker drive which spares Chicago of the pleasure of the many mid sized delivery trucks double and triple parked. We do miss the show of delivery men gesturing and calling to each other completely oblivious to the traffice they are blocking. The traffic accepts these delays withou a honk or gesture. One street we went down had many textile stores; something I'm not aware that we have in Chicago. I remember when Laine lived here and she took me to one of these places. There was store after store of fabrics, ribbons, hats, all specialty stores that seem to thrive only in New York.

We have connecting rooms that are a bit ragged, but comfortable. Cokes in the pop machine cost $2. Our room is $292/night. Yes, welcome to New York.

I asked Grandma for a list of sites she wanted to see and then talked to the tour lady in the lobby. It looks like we will spend tomorrow on a bus seeing Rockerfeller Center, United Nations and taking a boat out to Ellis Island. It sounds just like what she wants to do.
Tonight we are dining in the hotel.

I love you both and think about you often. I even torture strangers with brief references to my daughters. On the train I kept thinking about how I can get you both to have this experience. We would have such fun. I will need to look

March 23
After looking at the room service breakfast menu and thinking that $17 (plus $3.75 service charge) was a bit steep for pancakes, Mom and I trudged to a nearby Au Bon Pain for breakfast. Mom was immediately not thrilled that there were no waiters, but I knew it was the best we were going to get. We still had to make it to the NYC visitors center in time, so it was not a good time to be too picky. We got our goodies, sat at a table near a man carrying on a animated conversation with himself. He was able to break out of it to calmly and rationally greet all the employees by name; clearly a regular. He was well dressed, reading a paper, blended in with the working crowd nicely. The staff there were very kind to him. They spoke to him and brought him coffee. He couldn't pay.

I find myself comparing NY to Chicago. I am finding more similarities than differences, but I have never seen such welcome to a bum in Chicago. In fact, the people in this town seem different from 24 years ago. They seem nicer. Could 9/11 have had such a big impact? Could I have remembered incorrectly? Could I have just had really bad luck meeting people?

We got a cab to the visitor's center and asked the $64,000 question that haunted my mom. With the discovery of no toilet on the bus plan b had to be quickly formulated. My mom was unhappy. Of her three children, I am the one that does NOT know NY. Laine lived here. Jeph comes here on business. Not me. I did learn a few things that most other people will respond with DUH. Streets and Avenues are vastly different. Anything named STREET goes one way, AVENUES are perpendicular to STREETS. No wonder New Yorkers get lost in Chicago. Our streets are named randomly (here it's in numerical order) and there is no HINT in the street name whatsoever.

So we walked to Radio City. I had to walk slower than my usually breakneck clip, keep making sure my mom saw every curb, and did not get run over by a car. Probably she would have been fine, but I felt responsible. NY has changed from when she commuted to work from Scarsdale. I know she's feeling betrayed.

We went into take the tour of the NBC studios. While we waited, we could see where the people come with their signs to wave madly at the Today show. Not valuing a television appearance and valuing my warmth makes me a bad candidate for this activity.

Out the other window we could see the ice skating rink at Radio City. It is surrounded by flags and reminds me of Bank One Plaza in Chicago. I found a place for mom to sit and wait for the tour while I grabbed the opportunity to buy the gifts for kids and spouse.

We were taken on the tour by a woman I guessed to be about 24. Tours are conducted by NBC pages who are also assigned as assistants on productions. She clearly thought a lot of herself, had valley girl inflections in her speech pattern, but fortunately little control in the content of the tour so it was still interesting. Thirty of us were jammed into two elevators several times.

My backpack was packed for the tour we were supposed to take. I had extra clothes for my mom and me (thinking of the boat portion). The tour didn't happen so now I was lugging around this huge backpack on tiny NBC sets and elevators.

We saw the dateline set, a set used by Tom Brokow and I learned that the monitor on his desk that he glances at is actually the competing stations. He will change the order in which stories are presented in order to not be beat. That set is also used in case of a news emergency and can be set up and ready to go in 3 minutes.

Finally we saw the set for SNL which is now being used for Carson Daly's talk show. It is amazingly small. They got 50,000 requests for tickets last season and by lottery only 2,000 got ticket pairs. The show is written on Monday and Tuesday. Wednesday they order the set. Thursday it is delivered. Thursday, Friday and Saturday they rehearse.

After NBC, we had lunch in a restaurant that looks over the skating rink at Radio City. The skaters provided terrific entertainment. We had the primadonnas working on their figure skating routines. Some were very unlikely candidates given their appearances. My favorite was the 40ish male skate on hockey skates weaving in and out of the crowd and scoping the babes. He tried to get the attention of a group of three young things but even now they remain ignorant of his efforts. He eventually got conversation out of every primadonna. Brief conversation, but some success. The other point of interest was the one skater that I suddenly noticed down on the ice covered in a blanket with two people in official coats nearby. I guess he fell down. The paramedics brought a chair to drag him up to the ambulence. That's it for his skating career.

Mom was tired and wanted to go back to the hotel to lay down. She also wanted to walk back. I studied the map to be able to lead, but she was again very skeptical as she followed. The city is full of people and you have to pay attention or you'll get trampled. I tucked her behind me.
Once at the hotel, she napped while I got the refund for the tour we didn't take, and hit the treadmill.

We had dinner nearby and then went to grand central station. My Mom was in the station every day when she worked in the city and lived in Scarsdale. She made it very clear that she wanted to wander around. Despite her starting to change her mind, I felt that this was something that she would always wonder about and needed to walk in.

We arrived at about 6:30 and rush hour was still strong. The minute we walked in, my mom was awash with how much it had changed and I could tell this made her sad. I tried to convince that over time, two things can happen to a facility like this; it can die or it can live. Death means demolition. Life means change. In this case, the city felt the same way about it as she did and decided to nurture it. There are restaurants galore where there used to be none. A few things were the same and we tried to focus on that.

When I walked into Grand Central I had an entirely different experience. I happened to look up and see a portion of the ceiling in the main, grand room. It is an astrological map of the stars on a green background. I suddenly saw a 8 year old girl in a huge train station with her family and grandfather and she can't take her eyes off the fascinating ceiling. I had not thought about that ceiling in almost 40 years and the memory was so vivid.

March 24
With my mom's stress level, even hailing the cab was an ordeal. We went in front of the hotel so that the hotel dude could help, but others from our hotel had the same idea. She was awash with tension and I felt I had to make sure she did not try to muscle someone else out of a cab or start to complain because she perceived that we were being forgotten. Unfortunately, a hugh tour bus full of Japanese tourists chose just that moment to pull up and completely block that cab stand. This was not helpful to her anxiety level.

Took a cab to the WTC site. We didn't stop to walk around because my mom didn't want to. Just driving by had impact. It must have been horrible to witness first hand.
We got to Battery Park and bought tickets for the ferry. The ferry goes from Battery Park, to the Statue of Liberty, to Ellis Island and back. She had a tendancy to want to rush to get the tickets and rush to get in the line. Up until now I really have had no requests of my own. At this time I did point out that the ferries leave every 30 minutes and we had no reason to hurry. I think I convinced her that she was adding an artificial level of stress. The odd thing is that this made me notice that this may be my technique for handling my own stressful life. I think I pick and choose my battles to some degree.

My mom didn't want to get off at the Statute of Liberty, but did say earlier that she wanted to see Ellis Island. The structure itself was not that fabulous, but the tour was fascinating. The quantity of people that went through Ellis Island was amazing.

Back at our hotel, my mom wanted to rest so I went out and found soup for lunch.
My mom is finding this trip much more stressful than she expected and would probably just stay in her room if I didn't encourage her to go out and do the things that she had talked about doing while she was planning it. I don't think we'll see the United Nations, but we have hit much of it. At Ellis Island, she sat patiently while I went through a part of the museum, but was eager to get back on the boat to go back to the hotel room. She seems to lack faith that I can find a cab or find my way back, but I keep proving that I can. I don't think that'll give her faith, but it doesn't really bother me.

My mom and I took a cab to meet Jeph for dinner. This was my chance to get a glimpse of Central park as the NY Athletic Club was right across the street. My mom seems to be distrusting everyone and everything. While I very blissfully sat listening a story on public radio and looking at scenerio, she worried about bumping into other cabs and the driver's ability to get us there.

At one point she declared (correctly) that we were at Herald Square. I was able to confirm this not due to my incredible urban insight, but by my literacy. A small sign agreed. Later a much larger sign also made in unanimous and my mom said, see? I know something. I get the feelling she was proving it more to herself than me. I became aware that the NY that she knew is gone and causing her to doubt herself.

The driver let us out across the street from the NYAC, but in the middle of several horse and carriages. My goal at this point was to have my mom walk to the front of the horses rather than cut through. The animals seemed docile, but I'd like to stay out of the news. The light was against us which gave me a chance to get my peak in. My first sight were the dogs being walked and I missed my boys at home. My second thought was recognition at the number of movies that used this sight. I wasn't expecting the cement and tunnels. I was thinking more of an open space than one so carefully landscaped.

Mel and Betsy arrived soon after us and Jeph and Ellie immediately after that. The NYAC is a stuffy men's club with inflexible rules, dark wood and big furniture. The lack of cigar smoke was only a sign of the times. Women seem to be treated equally, but I can’t help but that think that attitude has been imposed on a reluctant club.

It felt darker but I couldn't decide if it was because of the time of day or decoration. i put my mother across the table from me and wormed my way next to Betsy and Mel.
I had a great time talking to everyone but particularly enjoyed my time with Betsy. She is a beautiful soul and I really adore her. Nothing escapes her watchful eye, but she is careful what she comments on. We got to talk quite a bit and even managed to escape to the Ladies' room for deeper analyses. Betsy also asked thoughtful questions of Ellie and as usual managed to come up with sweet, supportive comments.

Mel was happy to visit with Jeph and seemed to be equally happy to let Betsy and me have our time together.

March 25
We packed and went down to the lobby to check out and eat breakfast. It was around nine and sicnce the train left around noon. We caught a cab much more easily than the day before. While I was supervising the luggage, my momgot into the cab. Our cab routine was to have her let me get in first so that i am the one that has to scoot over. she again was too anxious and HAD to get in. Now she was struggling to scoot and never got past the middle. I just feel like she has totally lacked patience on this trip.

We made our way to Penn Station the was we always have been doing in a cab. i look at everything and she frets. We got out of the ab and I told her to trust me. I explained that I was busy trying to find where we needed to be. I didn't t want to have ot worry about her second guessing me and wandering off in another direction. I promised to get us ahtere and even swore that i remember where the Amtrak waiting room was. In fact upon enter the station, the signs lead us right there. Des[ite all this, my mom did not do as I asked and constantly searched about and even veared in other direcitons forcing me to check every few seconds behind me. We got the waiting room and she contined to be a ball of nerves. We sat in the waiting area and arrived so early our train was not yet posted. We could not see the monitor with arrivals and departures easily from where we sat and I asked her if she wanted to move. She said no. However within in a few minutes she was complaining that we could not see the monitor and we moved to another seat.

While we were waiting a package was left unattended and the Amtrak officials blocked off the area with seats starting to bark at anyone who came near. They brought in this beautiful German Shephard to check the area. he probably weighed about 150 pounds. He had a standard German Shepard coloring and the joy of being wth his handler just oozed from his pores. The dog found nothing.

We got on the train and I was able to talk the man across from me into letting my mom have his room in exchanage for hers. Despite everything, I wanted to kmeep an eye on her.
The scenery was fun to watch. We went through the Amish portions of Pennsylvaniaa and I fel very fortunate to catch some of the farmers in varius stages of plowing their fields, catching them in actioon. I got to see a farmer hookin g up hie horses to a plow as well as one in action later on. I also caught sight of a horse pulling a black covered buggy. I was unable to get my camera up and functioning fast enough.

This time we had dinner with a theater major from Pittsburgh just coming home from her internship in NYC. She was shallow and uninteresting.

Decisions

When I have been thankful for my health, I always thought about my physical health. After living with my Grace, I have become more and more thankful my mental health. Physical deterioration is inevitable; mental deterioration is not and I pray I will not put my children through this.

Physical pain is tough. Mental pain is worse. There are ways to discover the causes and find solutions to most physical pain. Mental pain is more complicated. We don’t completely understand depression, sadness and loss.

Grace is deteriorating on both planes. We have to decide which is more important. If we address the physical health, she will be put in situations where her mental health will slide even faster. We can make her eat what she doesn’t want to eat, make her use a walker yanking the last shadows of pride from her heart, make her brush her teeth every night by standing next to her and walking her through cleaning each and every tooth, but she will be beaten and miserable.

She has so little left to make her happy. Her dog gives her comfort. She loves sleeping with him and if he steps away, the search begins. Her friends have abandoned her. I understand why, but it is just another loss in her life.

She likes to watch the activity of the house and to know where everyone is. The birds outside the window entertain her. The sounds of my daughters’ friends make her happy and she remembers their visits long after they are gone.

It isn’t easy having her here. Don’t get me wrong. She is ornery, she is exhausting, she is contrary. She is desperate for me to talk to her but she struggles to understand me and think of something to say.

But, I can’t imagine her living anywhere else and surviving.

Hobbies

I think going to the bathroom has become a new hobby for my mother (flush optional). She must go about 10 times each hour. This is a mystery to me since she really doesn’t eat or drink hardly anything. I’m not sure what could be coming out if nothing is going in.


Sometimes she remembers to use toilet paper. Sometimes not. Whether or not she remembers, she still wipes. You do NOT want the details. Use your imagination.


She has a perfectly wonderful bathroom in her room, yet her favorite is right off the kitchen. This is fine except she has given up closing doors. So nothing like getting a glass of water and waving hi to a 85 year old woman with her pants around her ankles.


She has a favorite sink too. No, of course it’s not actually in the bathroom; it is in the kitchen. When she shuffles out of the bathroom, she expects anyone at that sink to jump away and yield to her. We have four bathrooms. Ok, two are upstairs and out of reach. But WHY do we have to duck and cover when she is coming to the sink?


The trip from the couch TO the bathroom is part of the fun. On a recent trip she got up and immediately face planted on the floor. Fortunately she was not hurt but the bruise pattern was one above the eye and one right above her lip and below her nose. Unfortunately, it looked exactly like the moustache of Adolf Hitler.

We are not mean people, but it was hard not to giggle.

Umbrella to the Picnic Theory

I love thunderstorms and we had a dramatic one Sunday night. I wasn’t sure how Grace would react. The last time it frightened her. This time she laid on her favorite couch on her back looking out the window.

Every once in a while she would ask if it was raining. It was. The lightening was nearly constant. The thunder drove the border collie into hiding. There were sirens that I hadn’t heard before or at least didn’t remember. My neighbor stuck his head out the door too with the same reaction.

We woke the next morning to no power. My personal crisis was where would I plug in the blow dryer. My larger crisis was managing Grace's food for the day. I got ready for my day.

Everytime I went into the bathroom, my brain remembered the lack of power, my hands did not and hit every light switch. My brain thinks my hands are very dumb.

Grace: “Are the lights out?”

The garage door, of course, didn’t work so I got the key for the door. We never tested this after it was built last summer and much to my pleasure the knob and deadbolt were keyed differently. No key for the dead bolt. Back inside I go

Grace: “Are the lights out?”

I went to the grocery store to get milk and bags of ice for a cooler. I also dried my hair in the bathroom there. Yeah, that’s me. I did my hair at the grocery store. Doesn't everyone? At home, I took the essentials out for the day… Ensure, Ice cream, milk, cottage cheese (she doesn’t chew) and put it in cooler with the bags of ice in front of the refrigerator. I then put a sign on the frig reminding the caregiver to use the cooler.

Grace: “Are the lights out?”

I got out a lighter for the stove since the electric start wouldn’t work, left her a cell phone and called the agency explaining that she would be unable to use our house phone to clock in.

Grace: “Are the lights out?”

I waited for the caregiver to arrive and went out to greet her. I told her that we had no power. She asked if the outlets worked. I had to ask her to repeat that question to make sure I heard it correctly.

Grace: “Are the lights out?”

As we walked in, I explained what I had set up, showed her the cell phone, and so on and just as I finished showing her how to light the stove, the power came on.

Ramblings from the couch

Her entire life is spent on the same moderately ugly flowered couch. Occasionally she gets up to go to the bathroom (and I’m excited to say that toileting is still not a huge problem), but for the most part, she lives on a couch.

Fortunately it is well situated. She catches any traffic going up and down the stairs to the second floor. And with me, that’s a lot of traffic. Just getting ready to go play soccer takes about 300 trips. I go upstairs to get my shin guards and see that there is laundry. So I grab it, come downstairs and throw it in. On my way out I notice that I left folded laundry and run it upstairs. But the dishwasher needs to be emptied so I come back down to take care of that. Meanwhile it’s getting close to when I have to leave and still need those shin guards.

Each time I pass by, though, there are questions.

“Where are you going?”

“What are you doing?”

And my very favorite….”What’s going on?”

How do I answer that? What do you MEAN ..’what’s going on?’ Do you mean current events? Upstairs? Backyard? Kitchen? My kids? What???? Usually I stop and look at her trying to think what she wants to know. I have tried different things, but haven’t found it. If you have any suggestions, I’m all ears.

I guess when you live on a couch, you have to get your news from anyone who appears to be mobile.

To mix it up, sometimes she lays down and stares out the front window. There are very popular bird feeders right outside the window covered with sparrows that double as little feathered clowns. I don’t think she sees that. I don’t know what she looks at.

This is her first destination in the morning. She comes out dressed for autumn even though it’s in the lower 90s. Hobbling to the couch, she has her shoes and wears her strange slippers. It takes quite a while to go from slippers to shoes and some mornings we wear a slipper on one foot and shoe on the other. Hey, it’s a fashion statement. It all happens on the couch.

We try to get her to go outside. No chance. We ask if she wants to sit in the other room. Uh uh.

We live on the couch.

Silence

Given a choice between music or television, I am 80/20 going to pick music. Given the choice between television or silence, I am again going with the 80/20 ratio for silence. It’s not that I dislike television. Tivo has empowered me to watch what I want, when I want and skip the stuff I don’t want.

I seem to be cursed when it comes to randomly turning on the television. We have a billion channels, but nothing appeals to me. If someone else turns on the television, somehow they are more likely to find something that interests me. Didn’t help that we changed cable service so the channels were all reassigned. In fact part of me believes that they are continually reshuffled to prevent me from knowing where anything is. Where is my iPod?

Grace loves the sound. She wants the television on all the time. It doesn’t matter what is on, though we try to tune it to shows from days she remembers (old movies, bad sitcoms). She can’t follow the action, doesn’t understand the plot, rarely even faces the television, but it must be on. I long for the silence, the sound of the world through open windows. Where IS that iPod??

As Grace aged, television became more and more important to her. She actually used to have favorite shows, watch the news, change the channel…not anymore. I think it’s just the sound. For someone who never faces the screen, she is amazingly picky about the quality of the image.

Grace’s ability to understand what we say is diminishing as I type. I don’t think it’s a hearing issue as much as a diction issue. Her brain can’t separate the words. How can she possibly understand the dialogues on television? It just isn’t happening.

So why does she need it? I really can’t be sure. But the sound is in our house from the moment she awakes to the time the caregiver leaves at 10 pm. I don’t like it and have been known to walk around the house listening to my iPod.

In the car, I take opportunities to be in as much silence as a car will allow. The wind, the engine, the traffic, yeah, it’s there. But it’s not the television.

I have to go get my iPod now.

Flushophobic

I received a text message at work ...

"i found a whole ice cream bar in your mother's toilet"

Of course this was immediately followed by...

"had to plunge out your mom's toilet...yecchhh"

All I could think of was, "wow, that was a DOVE BAR!!!"

She used to love ice cream bars. Every day she'd eat several of the little dove bars and made sure she had a huge supply in the freezer. When my kids were little, they always knew they could count on that smooth chocolate melting in their mouth. My older one always felt it important to suck out all the ice cream and then deal with the chocolate last. This of course resulted in the chocolate being more of a fashion statement than a dessert. At the age of 20, she's grown out of this.

I think.

So why Grace felt it was okay to toss this one out is the sign of a huge mental slide. Others would say that just never flushing was a big deal. Ok, yeah, that's not good. But the Dove bar. REALLY. That is pivotal.

If asked, she will tell you that she flushed, she always flushes, or (my favorite answer) she never uses THAT toilet. I particularly like the last answer when she is talking about the toilet in her bedroom or she is just emerging from a bathroom that she just used. Not only that, but the mere question evokes her new 'mean' look. Sometimes if she wants to really crank it up, she'll shuffle over to you and give the 'mean' look really close. You have to wait a bit for her to drag her wrath over to your face.

I try not to laugh. This 'mean' look from a 103 lb woman who cannot get anywhere without shuffling and nearly losing her balance has very little impact.

Man, but a DOVE bar. Can you imagine?!?!

Huh?

We have a new caregiver. In addition to missing many teeth, she seems to have a hearing problem. Already it’s a foundation for a relationship with my mother who also can neither hear nor hang on to her teeth. Just yesterday, she pulled another tooth out. She put it on the table with strict instructions to keep it. Yeah, right. It was gone in minutes.

Grace: “Are you looking at me?”
Deaf dentally challenged caregiver: “Why shouldn’t I be?”
Grace: “Don’t stare at me!”
Deaf dentally challenged caregiver: “I’m happy.”
Grace: “When are we eating dinner?”
Deaf dentally challenged caregiver: “You don’t look any thinner.:

My job is to not laugh.. out loud.

Grace: “Where should I sit?”
Deaf dentally challenged caregiver: “huh?”

…and so it goes….