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