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….

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.'

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?

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.

Unfair

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.

Aura

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.

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.

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.

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.

Frantic

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?

Sleeping…

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."

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.

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.

I want to SCREEEEEEEEEEEEEEEAM!!!!

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.

Rampage

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.

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.

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.

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?”

Smoke

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.

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.

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.

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.

Again.

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