Friday, December 26, 2008

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.

Sunday, December 21, 2008

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.

Sunday, December 7, 2008


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.

Sunday, November 23, 2008

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.


Sunday, November 2, 2008


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.

Thursday, October 23, 2008

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.

Saturday, October 11, 2008

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.

Saturday, September 27, 2008


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 17th 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.

Friday, September 12, 2008

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.

Monday, August 25, 2008


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.

Thursday, August 14, 2008


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.

Wednesday, August 6, 2008

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.

Sunday, August 3, 2008

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.

Sunday, July 6, 2008


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.

Saturday, June 28, 2008


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?!?!

Sunday, June 15, 2008


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….

Friday, June 13, 2008

Beside Herself

What does it mean to be 'beside yourself?' Is it an out of body experience? Is it sort of a multiple personality thing? What is it?

Grace is 'BESIDE HERSELF' every night. She tells me this as if she were challenging me and I have no idea what to offer. The comment comes with a harsh glare. Usually this happens when the sun starts to go down. The wandering begins. Maybe she's trying to actually GET beside herself?

We have new caregivers for the evening. She hates them all. Meaner than a snake, she yells at them and yells at me. She points at them and asks me when they are going home or what are they doing there or why are they staring at her. Last night she got so mad she told me she was leaving... moving out to a motel. Sure. I'd like to see that. She can't drive, can't work a phone, can't feed herself, yet she is moving out to a motel. Maybe she can be in two rooms and truly be 'beside herself.'

I think she wants me to do something. She wants me to make it better. She thinks somehow I can put her brain back together and make things connect. Why not? It's a reasonable request. I fix everything else so why can't I fix her? I have answers for my daughters, so I certainly must have her answers.

Just not tonight. I'm 'beside myself.'

Sunday, June 8, 2008

On Her Way To Oz

She used to love the rain. The stronger the storm, the louder the thunder, the brighter the lightening, the better. And tornadoes? Pah. She's not going in any basement until she SEES Toto blow by. If the lights go out? So what. It was the closest she'd ever get to camping so let the character building begin.

Now she's afraid. Genuinely, completely afraid. And when I ask her what is scaring her, she stumbles for her words, searching and has to confess she doesn't know. I remind her that we are in good house and the plants need the rain. She doesn't care.

I can't help but think that somewhere in that disorganized brain, it isn't the rain that scares her, it is her deterioration. Her brain can't process the loss but is smart enough to know that it is bad. She is trying to organize the fear but can't make the connections. Part of her deterioration is her increasing ignorance about her deterioration. Something is wrong so she is flailing to find its cause.

Yes, it's the rain. It must be. What else could it be?

Friday, May 30, 2008

Where's Tom????

8:01 p.m.
8:04 p.m.
8:16 p.m.
8:17 p.m.
8:20 p.m.
8:32 p.m.
8:37 p.m.
8:41 p.m.
8:44 p.m.
8:53 p.m.

Wednesday, May 28, 2008


I am noticing changes in my daughters.

At first they could hardly look at her. I could see the pain in their faces as they see their grandmother deteriorated. They resented having her here but understood the choice. She was an invader disrupting our house and stealing my time.

It was similar to bringing home a new baby but without the "cute."

But they have changed and I am so proud of them. My younger one answers her questions and supports my efforts. She understands the dementia and doesn't seem angry any more. My older one stays firm without being mean; she backs me up. Their adjustment helps me. It reduces my stress.

It is so unfair to make them deal with this. So unfair to introduce this person that can get nasty, annoying and pathetic. So unfair to make them explain to their friends why Grandma is sitting on the couch with ice cream spilled all down her shirt or shuffling out in her underpants and skinny granny legs. So unfair.

But they love me anyway and put up with the injustice.

Sunday, May 25, 2008


It starts as a little shimmer out of the corner of my eye. It's like the glare off a shiny magazine page or the spot in your eye after glancing at the sun. I ignore it for a while, thinking I am wrong. It's not there. I must be mistaken.

But it grows. The shimmering creeps across my vision until the left side is lost in micro flashes and darkness.

I know what's next.

My mother used to care about this. She knew that the shimmer would stop suddenly and then the pain would grip my head and eyes for two days. Later the nausea would signal its end. The first time this happened, she knew exactly what it was.

Tonight she only got angry. "Why are you acting this way? Why are you turning out the lights? Why are you going to bed? What should I do? "

I understand what is happened but I can't believe it either. The light hurts my eyes, the sounds reverberate in my head and bang on my skull, but she is angry?? Wow.

I go through the motions, trying not to open my eyes any more than is necessary. I get her water, her sleeping pills, the dog's water... then off to bed for me. Anything just to close my eyes.

My pain doesn't matter. It is mine alone.

Saturday, May 10, 2008

what keeps me believing

Senior Sermon {exerpt}

Just as God has placed each part of the body where he wanted it, so has he placed our lives to coordinate with each other. The interactions we have with each other, even the minutest, are intentional and meaningful. The loving interactions, and especially the painful interactions.

I have lived with my grandmother for the last 10 months, and each day I watch her deteriorate at the hands of Alzheimer's. She is ripped of her memory and rational thought. I watch as she is no longer someone I can run and cry to, but more of a child that I have a difficult time keeping my patience with. Yet, I wondered, if God is in everyone, where is God in this situation. Where is God in my Grandmother, as her mind slowly fades away? She can forget the year, and where she lives, but what she has never forgotten is the most important thing of life. She knows how much she loves my family. Even if she cannot remember our names, she knows that she loves us. It is that piece of God that has let my mother continue to stress over the responsibility of her life. One late night, as I had fallen asleep on the couch I awoke because my Grandmother had fallen on me. She was groggy, and wandering in her new home, yet she fell because she had reached to give me a kiss on the cheek. She did not understand that it was four in the morning, she did not know where she was, or how she had fell, but God has kept within her a love for our family. Even though the next morning she had no recollection of our encounter, the whole time I led her to bed she told me how much she loved me. She told me how much my Grandfather loved me. God was allowing the most important part of her spirit to thank me.

Thank you God for keeping love, inside of her. God has carefully placed each part of the body exactly where he wants it. He has placed our hands, feet, eyes, ears nose, stomach, exactly so we function together. He has placed love in my Grandmother so to remind our family why we add what seems to many as an extra stress in our lives. Our Spirits are a part of the body of Christ.
We as God's Children depend on each other to function. If one part of our body hurts, every other part is involved. If one part of our body flourishes, ever other part celebrates with them. God has formed his church as his body and his apostles, prophets, teachers, healers, are what complete his body. As quoted from the message "For no matter how significant you are, it is only because of what you are a part of. An enormous eye or a gigantic hand wouldn't be a body, but a monster. What we have is one body with many parts, each its proper size and in its proper place. No part is important on its own."

As it may seem that it is difficult to find that gift that God has blessed us with, it is when we are least expecting it that we shall find it. Until then, the relationships formed as we work together as one body of Christ are fastening by the immense power of love. The love I feel from my family and friends is what allows me to smile each day. It is the same love I will take with me to guide me for the rest of my life.

God has challenged us to see the beauty when it is less obvious. Despite its difficulty it is crucial to challenge yourself to take a breath of fresh air in the mist of chaos, and see the beauty and love in everything.

Thursday, May 8, 2008

Road Trip

I had to drive my daughter back to school. It isn't far so I actually talked Grace into riding with us. I was so proud to see my daughter taking the initiative to walk her grandmother carefully out to the car. She spoke to her so patiently, reassuring every step. That kind of stuff makes my heart smile.

My daughter and I talked the whole time, while my mother clung to the door as if she were on an amusement park ride (no, I'm actually a rather conservative driver). She tried to figure out where she was and for the most part muttered. The good news is that she wasn't angry or paranoid, just tense.

On the ride home she spoke to me more. She was trying to read the signs and guess where we were going to turn next. She kept saying that if I let her out RIGHT THERE, she'd have no idea how to get home.

Then some of the false memories surfaced. As we went down one street in Evanston, she said that this is the street where her grandson met his wife. Actually they met in Canada. So she's a tad off. I just said "Oh, right." Why correct her? What's the harm?

We passed her old high school, and she didn't recognize it. Yet later we passed a much smaller school and wanted to know if that was her old high school.

I can't imagine what it's like to get in a car and have no idea where you are. It must be like those dreams I have where I'm home but it doesn't look like home and then suddenly I'm somewhere else.

Only she's never waking up. She's only falling deeper and deeper asleep.

Wednesday, May 7, 2008

Do NOT Go there. Just Don't.

When I tell people what I’m going through, I am always surprised to hear that the listener knows JUST what I’m going through. Without provocation they continue to tell me that they have a father, aunt, mother in law, grandmother, whoever with Alzheimer’s, or they have noticed changes in their father, aunt, mother in law, grandmother, whoever who is currently living on their own, or they remember as a kid….. sure.. they know JUST what I’m going through.

I think not.

I am dumb enough to even say… “I don’t think so….”

This is met with resistance and objection. “Oh no, I DO!!!”

Sorry, unless they have bathed her, been the object of her wrath, heard her question asked every 30 seconds for HOURS, held pans as she's tried to talk while throwing up, tried to coral her from walking out to see your teenagers friends without pants, listen to her sudden lectures about how I mean I am, how I ignore her… sorry, they just haven’t.

And telling me they have just belittles what I am going through. It tells me they truly have no idea, that they don’t know anything about sundown syndrome that they don’t know what it’s like to guess what THAT new word means.

They just don’t.

But when they do, if they do, I can listen.

Monday, May 5, 2008


As I drove to work, thankful for my new job, I thought I’d just better check and make sure the caregiver arrived. I left at 7:30 anticipating the 8:00 arrival. Grace was still sleeping. I left a big sign saying that someone would be there at 8:00. As long as she has that sign, she does okay. So I called the house…

Ring ring ring…

Fortunately I don’t have to worry about her wandering out of the house. I’ve seen her try to navigate the back door. She approaches it as if she were trying to cross a pit of vipers while barefoot. Carefully and cautiously, she edges toward the door, sliding her feet slowly while reaching and waving hands like someone slapping around the dark for a light switch. Nope she’s not going anywhere. Gotta be able to work the door to make your escape.

Ring ring ring…

But the stove… could she start the stove? Turn on a burner? Would she suddenly try? She could turn on the gas, not get the starter going and the house could fill with fumes… or what if she DID get the fire going? Would that be worse or better? Did I leave the knobs on the stove? Did I?!?!?

Ring ring ring…

Or maybe she’d fall. That’d be ugly. Once she’s down, that’s it. The dogs would probably lick her until she drowned. Or what if she hit something and was bleeding? Or if she broke a bone? She’d snap like a twig.

Ring ring ring…

No one was going to pick up that phone. So I called the neighbor. No car in the driveway. Nope, she WAS alone.

I KNEW what happened. The agency sent out too many schedules and too many adjustments. No dates on the schedules so no one knows what’s the latest.

No one picked up at the agency (naturally) so I called the caregiver who was home waiting to give birth. SHE CAME…YAY!!!!!

And while I’m frantic, where is Grace?


Tuesday, April 29, 2008

Out Loud

The strangest stuff comes out of her mouth. I finally realized that she is just saying anything she is thinking. Imagine that. Think of your day. What if YOU said just anything you were thinking. Standing in an elevator, suddenly you'd say...

"Can't you just WALK up one floor?"

"Boy I wish I could fart."

"Geez that's a really ugly shirt."

"Wonder what would happen if I hit all the buttons?"

"Now I remember why I never wear these socks."

She has no restraint, no understanding of what is kind and tactful, no concept of people being able to hear her or not hear her. It's like she runs entirely on impulse. Some of her comments are under her breath. She can't just think. Her thoughts leak out her mouth. Grace has no control over this nor does she care.

For us, that means we don't need to hang on every word she says. We need to determine when she is talking to us and when she is just "thinking."

Sunday, April 20, 2008

Six Pounds of Magic

Dogs are amazing. They love unconditionally and trust blindly. Grace has an ugly little dog named Blackie. He is missing teeth and should be the founding member of Fur Club for Dogs.

Blackie adores Grace. He has to be with her every minute. If the bathroom door separates them, he cries outside until she reappears. When she sits, he is in her lap. When she lays down, he is in napping next to her. At night, he slithers under the sheets to cuddle up right next to her. As she and her Alzheimer’s brain starts to wander, he is right there following. Smart enough to keep from being under foot, he looks up adoringly waiting for an indication of direction.

She is never mad at him. He can do no wrong. He is her best friend. She talks to him and he loves it. His little tiny body heaves a heavy sigh as it curls up in her boney lap. There is no medicine that does her as much good as the warmth of that little dog.

Blackie does not notice the diminished brain power. He loves her no matter what. She never seems to forget him. We take care of his physical needs and he takes care of her heart.

No one reaches her like he does. He went from a life alone with Grace, to being one of four dogs. One of our dogs is a therapy dog and we have noticed how he too can reach the Alzheimer’s patients. The ones that haven’t talked in days, suddenly look up, smile and say something to the dog.

I know how I feel when I am greeted by the wagging tails, barks, and licks. It is so good for her to have that connection. Dogs are magic.

Monday, April 7, 2008

Between a rock and a hard place

There are days she is impossible. Take tonight for example. She can't hear me so she asks me to repeat...and repeat.... I speak louder and that doesn't help. I speak slower and then she gets mad at me for talking to her that way.


It's extremely difficult for me to do anything that requires any concentration. If I arrange it so I can be near her, she can't stop talking. If I don't answer her within 3 seconds, she gets furious. She can't remember I need to concentrate so she can't stop. She has no sense of time so she doesn't know how long she waits for me to answer. If I leave the room she gets angry.

Sometimes when she really tears into me, I have to just walk away. That can evoke two responses; 1. She gets MORE furious or 2. she gets tremendously remorseful and pathetic. Neither are what I want, but I just need space and a minute to collect myself. Her anger also makes her try to strike or spit or throw things. Fortunately she does not have the strength or mass to provide any impact.

She hates the 4-8pm caregiver so it's hard for her to run interference, even though she tries. I'm probably just going to have to stay later at work to get my work done. But as far as doing things around the house like balancing financial accounts or pay bills, that's tough. I have to time it just right.

I try to be patient and remember that she is a victim of a disease that I could very well be facing someday. I try to remember that I can only expect the same care that I am willing to provide her, but it's really hard.

Thursday, April 3, 2008


The nicest part of Alzheimer's is the temper tantrums. Grace is seriously affected by the sunlight and as soon as it goes down she turns into another person.

One of our caregivers drew the short straw and is here from 4 to 8. She is a kind person with more patience than I have. Grace dislikes her. She dislikes her presence, not her. She told her tonight that the caregiver prevents her family from being around. Grace refuses to eat the dinner that she prepares, looks at her antibiotic from the oral surgeon with suspicion as if she were being poisoned. Grace makes nasty gestures at her; faces like you see in third grade from the nastiest girl in the class. She asks her over and over... "when are you leaving?"

Grace is certain that there is a plot. That we are intentionally doing things that take us away from her. That neither my husband nor me are telling the truth when we say we have work to do. If he leaves, he must be doing something other than what he said. She is suspicious of any reason we have for being out of the room. So she storms into the room I am in.

At night before she goes to bed, I go in her room. I turn up the heat, water the plant, pick up the dirty laundry and fill the dog's water bowl. Her suspicion and paranoia peak. "What were you doing in there? You were in there for a long time!!!"

Focusing on the caregiver, she yells. "I can't keep doing this!!! Something has to change!!!" How do I tell her that if she doesn't like it here, she'll have to live in a nursing home?

Right now she's yelling at my husband. She's bouncing off from one bizarre reason to another like a pinball machine. Her lines of logic are weak, random and short lived. She tells us that she is beside herself, that she is shaking, that she is going to throw up. I am certain these are all meant to evoke a response from us.

It takes everything inside me not to yell back; not to react. But honestly I don't know what to do. I can't reason with her because she can't reason. I can't explain anything to her, because she can't remember or learn. I can't change her situation and I can't make her understand. So what do I do? That pretty much exhausts my bag of tricks.

Meanwhile she yells. We're plotting, we're mean mean mean, we're terrible.

I guess we are.

Tuesday, April 1, 2008

Tick Tock

My mother has always been a slave to the clock.

Spontaneously, she announces the time. There is no reason. Suddenly she will say... it's 3:15. She does this several times throughout the day. I supposed I should be happy she can still tell time.

Despite all of her clock watching, when the doctor draws a blank clock and asks her to draw a certain time, she cannot. The effort is draining and depressing. Because she can still tell time, she can see that she's wrong, but she doesn't know what to do to fix it. Her embarrassment is apparent.

When I was a teenager, she was very specific about the time I had to be home. She would stay up and watch the minutes tick away. I knew I'd better be home on time or in a hospital. I chose punctuality over infirmary. It was easier.

She eats because it is noon, regardless of her state of hunger. She wants dinner somewhere between 5 and 6 pm. Anything else causes great stress. Dinner is a significant benchmark of every day. If I am home, she starts asking as early as 3:30 if I know what we are going to have for dinner. This is a strange question to me for two reasons. First, she eats just about the same thing every day and secondly, I am not a big dinner planner. Dinner is not the flagship of evening that it is to her.

When she eats, I make an effort to eat or at least sit with her. She doesn't like to eat alone. It also lets me encourage her to eat. With all of her stress about when dinner will be served and what will be served, she often eats very little. The post dinner ice cream is always the goal.

Now she is forgetting dinner. Tonight we ate together at around 6 and at 8 she said to me in a panic, "It's 8:00!! When are we going to eat dinner?!?!?"

Fortunately ice cream is the answer to that question. Thank goodness for ice cream.

Thursday, March 27, 2008

Chewing Aspirin

She no longer takes care of her teeth. The dentist suggested pulling them all but the irony is that since she used to take such good care of them, the roots are solid. The teeth are decaying and falling out. I can't even look at them. They are black and awful. Every couple weeks, another is missing. I used to sit with her every night and make her brush and soak them in flouride. But I got tired. What is the point really? If she doesn't care, why should I? Did I do it just to make myself more comfortable? To make it not so.. soo.. disgusting????

What amazes me is that teeth fall out and she has no pain. Well, USUALLY no pain. tonight she says it hurts. I have her point to the tooth because I know tomorrow when the pain is gone, so will her memory of it. To my horror, the tooth she points to is the 'canine' and there are no teeth behind it. They are all gone. How the heck did they disappear? Did the dogs eat them? Did she? Geesh....

She asked for aspirin and that's what I gave her. She has never been able to swallow pills and I have cringed all my life as I watched her CHEW aspirin. For the first time, the taste got her and she couldn't do it. It's just another sign to me of her slipping away.

Then she went to bed. Or so I thought. Five minutes later I hear her calling downstairs. Her tooth hurts. Can she have aspirin???

So tomorrow I will make sure she is taken to her dentist. Probably this one will be pulled. Soon her teeth will not be ugly. They will just be a memory.

Monday, March 24, 2008

A Rabbit and a Staircase

I believe the progression of Alzheimer’s is similar to the learning curve. Calling it a ‘curve’ is a misnomer. It is a staircase with steep steps that are long and irregular. It is stable for a while and then suddenly there is a step down like flat slippery stones on their way to a riverside.

Yesterday was Easter. As it was Sunday it was also shower day. I have given up having the caregivers do the shower. She likes the attention from me and is much more cooperative for me than the caregivers. Well, except Liz. She LOVES Liz. We all love Liz, but Liz has a life and can’t be here every minute. Liz’s little boy loves her too and we have to share.

Normally for the shower, I just lay out her clothes in the order they will be put on, get the bathroom heated up and get the water going in the shower. I also have been urging her gently through the steps to shower and helping her dry. Yesterday I had to do more. She was confused about undressing so I had to help a bit more. She didn’t understand the concept of putting her clothes in the laundry. And once in the shower, she was confused about how and what to wash. I had to take a much more active role. Instead of standing on the other side of a closed shower curtain, it was open and I was guiding her step by step.

She looked down at herself and had to ask me .. "Why do I only have one breast?”

How do you forget a battle with cancer?

“I had cancer?” Her face showed the surprise. It was too much to digest. We continued the shower. I know I'll be asked again.

I dried her carefully and helped her dress. Despite her original reluctance to take the shower, she seemed delighted with the attention. I promised her ice cream and her childlike eyes lit up at the prospect.

A woman called from church asking if she could bring over a lily. Our church does this for people who don’t’ get out much. She asked who had just called. At the news that someone was coming, she panicked. “I have to hide.” I asked her why and she said she didn’t know what to do when they came. What to do with the dog? What will they talk about? How will she manage the door? I told her I would be here to do all that and she didn’t have to be around, but the panic continued for 20 minutes until this young mother and her equally reticent 5 year old daughter came in with the lily. They were in and out, much to the pleasure of my mother. Now we have a lily.

“What’s that? Who’s that for? Why is it here?”

Saturday, March 15, 2008


I woke up in the night after having a disturbing dream. Most of the dream, as it typically does, slipped away. I tried to remember, but it was like trying to catch smoke with your hands. The feeling and a few snapshots remained.

I was trapped in my mother’s body. My brain was in tact, but I couldn’t move or walk with ease. I tottered and was unsteady, exhausted. I felt frustrated and trapped. Every step was unstable and tenuous. It was an awful feeling.

I couldn’t talk. I couldn’t tell anyone, I could only try to maneuver. It was like trying to run in water.

Ironically, this is not my mother’s biggest challenge. I don’t believe the physical limitations challenge her happiness as much as her brain’s betrayal. It frightens her to suddenly wonder where everyone is, to suddenly feel alone. I can reassure her but seconds later it’s gone and she is fearful again.

“Do you love me?”

She asks this daily. She is looking for a smile, some comfort, some connection. She needs to be told over and over. She is part child, part old woman, part mother, part helpless puppy.

Sunday, March 2, 2008

Working without a net

I was not a brave child. I leaned hard on my parents. It terrorized me to be lost or separated from them. I remember visiting my grandparents in Scarsdale, New York. I was very young and didn’t see them often. I woke up from a nap and my mother was in the basement of their building doing laundry. I panicked. I remember my grandfather taking me down to see her reluctantly calling me a "baby" the whole way down. I can still hear him... "Baby, baby, baby..." I have very few memories of him. Everyone else describes such a great man. I keep my mouth shut and smile.

I couldn’t even sleep over at friends’ houses. I almost never accepted invitations. On the rare occasion that I did, I just endured it. I was miserable.

As I grew up I always knew I could run back home if I needed. I did it rarely, but knowing that gave me strength. I went off to college and battled homesickness for much of my freshman year. I could call my parents at any hour and get a hold of caring listener. My mother was great. She listened and always found the words to build me up so I could go back and tackle the world.

With her encouragement, I spent a semester in France. It was an amazing experience and without her words, I don’t know if I would have had the courage. They promised to come see me and they came to Nice right around my 21st birthday. It was such a shot in my arm to see them. It made me strong.

I was always amazed at my peers that didn’t need this constant support. I still don’t understand the difference between them and me.

As a new mother, my parents continued to support me. My father came over when I had a sleepless night with a baby. He would walk the baby so I could sleep. He was amazing. Knowing that he would be there in the morning allowed me to stay up at night with sick children and be a good mother.

My father died. My friend was gone. The rug was yanked and it took a long time for me to be able to stand up again. I still feel cheated to be without him. I was a late child and another ten years with him are due me. Not fair.

My children grew and suddenly I was the source of their strength. I realized why my strength had been fed and nurtured for so long. I was training for this. It was time to pay it forward and be a testimony to the strength that they provided.

My mother needs me now. She can’t be there to listen, to tell me exactly what I need to hear. I need to pay back all the support she gave me. I need to pay it forward to my kids, my husband, my job, my dogs, my bird…

I can do this. I can do this. I can do this.

I have to.

Weekend Chores

Bathing is a challenge. I accept that and know that it is a reality. Every Saturday is “hair wash” day. She argues vehemently. She doesn’t need help. She washes it every night in the shower. She doesn’t need to wash it today. Yet the reality is that she only washes it on Saturdays. By then her hair is crying out for a little soap.

She likes to do that separately from her shower so I comply. Standing in front of the sink, she leans forward to have her short white bob washed. Next she sits while her hair is brushed and dried. Years ago, she loved to have her hair brushed. Anything you would do to it would make her very happy. Now she sits and grimaces complaining that she is being tortured.

Then Sunday is even better; Shower Day. All the cajoling and negotiations from last weekend never happened and she insists that she faithfully showers every night by herself. But she has worn the same clothes all week and when she does finally get in the shower, she is hungry for someone to be very close by to help her. The final push that convinces her is after lunch. I won’t give her ice cream until she has taken the shower. She says I’m mean, I’m not her friend, I’m not her boss and that she’d never move in here if she knew I was going to be so terrible to her. At first it bothered me a bit, but not any more. I have learned that just being matter of a fact about it is the best approach. She yells at me, swears and (my favorite) sticks out her tongue.

As my mother, none of these behaviors occurred. She never swore. Her hygiene was meticulous. Her hair was never matted or greasy, but by Saturday it starts to look that way. There are moments it’s hard to believe that she is the same person.

This has to happen for her own health. I can’t let her stay in the same clothes and never bathe. I dread the days that will come where she will have toileting issues.

Maybe I’ll be lucky.

Wednesday, February 27, 2008

Some Skills Persist

The caregiver, Grace and I will often play "Wheel of Fortune", sort of like hangman. I was surprised that Grace does pretty good at figuring out lengthy, partially completed word puzzles. She is not too sharp at selecting appropriate letters for the puzzle, but once the puzzle starts to take shape she furrows her brow in deep concentration and then BOOM - she gets it! Last week she solved The Field Museum of Natural History with just 5 or 6 letters on the board...I was amazed.

And I continue to be corrected when I make a grammatical error such as, "Where is mywife at?"

"That is not correct grammar!"

Since the onset of winter the morning greeting has always included, "I hate winter, when is winter going to be over...?" I believe we're all wondering the same thing.

Then and Now

The caregivers actually have an advantage. They don’t remember Grace before Alzheimer’s started stealing her from us.

I can still hear her laugh. My dad could bring out this laugh that starting in her toes and bubbled up for all of us to hear. She was always about two minutes behind every joke which only made it funnier. But she was patient and good natured; still able to enjoy the rapid fire humor that bounced around my childhood home.

I remember her caring for me. I remember her listening to me as I rattled on and on about my day, school, activities, and later my kids, my divorce. Blindly, she stayed on my side and built me up with kind words of encouragement. She told me I was smart, pretty and a good mother (totally unbiased, of course).

When I was pregnant, she was there. When I was sick, she was there. But she knew when to leave, too. She knew how to be in my daughters’ lives without being overbearing. She knew that if they didn’t call it was because they were busy being teenagers; not because they forgot her. She was confident in their love, in my love, in her husband’s love.

She had her girlfriends. Any week was filled with lunches and outings. If they weren’t available, she’d go out alone to lunch or a movie. One local restaurant can hardly believe that she isn’t coming back anymore… that she can’t remember what to order or how to order… that she can’t remember how she’ll get home.

She needs constant reassurance, afraid that she is unloved, forgotten…afraid that she is not cared for. Her friends used to call, but her distance and confusion made it hard for them to relate. Where was the old Grace? Who is this person?

Like a small child, she needs care. She needs to be reminded that she is loved and valued. Her fears haunt her, but they go unarticulated.

She can’t hear me; she can’t understand me. Often I have to repeat several times, but I have to keep it simple. Sometimes I have to write it down.

Most of all, I miss her smile, I miss her laugh.

Monday, February 25, 2008

Sleeping Pills

Sitting at the counter trying to figure out how to start this blog, I heard the door open tentatively. I was certain what was going to come next and I was not disappointed. She emerged with her pants off, granny panties, skinny legs, cheap slippers... "I need sleeping pills..."

I put them in her room two hours ago.

She has taken them and forgotten.


I have to hang tough. "I already gave them to you."

"I didn't take them"

"I can't help you." But I can tell by the slurred speach that she has already taken them.

She turns slowly and walks back to her room. The door closes.

It has taken months to get to this point. She used to fight me. Somehow she learned that arguing didn't help.... that I wasn't going to change my mind.

She'd accuse me of judging her, of trying to deny her the pills. She'd threaten to make notes next time and keep track. All the while I just had to hang tough because the pills were killing her. She'd take some, forget, take more, forget, take more ... then there was the call in the middle of the night and we'd have to go over and pick her up off the floor. I saved one of the phone messages in case I forget.

But what kind of life am I saving? Is she happy? Would I be happy? Is this the right thing to do?

I feel awful. She is lost in her own head. It must be terrifying to not remember what happened five minutes ago, to constantly have to wonder where everyone is and ask over and over. The insecurity must be awful.

She self medicates to make it easier. She doesn't understand why she is so sad or scared. She just knows she feels bad. She misses her husband. She misses her father. She misses where she used to live, but I really am not sure where that is.

She spends much of her day sleeping yet she is afraid that she won't sleep. But she does. And she sleeps soundly. She gratefully accepts the wine I give her saying it will 'calm her nerves' but there is no alcohol in the wine.

But it tastes good and comes in a pretty bottle