Yesterday was Memorial Day, a day in which we gave solemn, heartfelt thanks to those men and women who have given of their time, energy and in many cases their lives to secure our freedoms, our way of life. Memorial Day is also commemorated with parades, speeches, services, war movies on TCM and AMC, and of course the infamous barbecue signaling the start of summer. It is also the official opening day for beaches, amusement parks and blockbuster movie premieres and the Indy 500. Yet, somewhere in all the excitement of the day a red poppy is offered to a passing pedestrian and its meaning remains elusive.
As most people did yesterday I too went to a barbecue and saw an old friend. We had worked together many years ago and laughed about old times. Than we shared all too familiar stories of what it is like to take care of a parent who slowly is succumbing to the silent and deadly foe, Dementia. Her mom was a firecracker, wild and fun loving with seductive red hair. When she entered a room all eyes were on her; she was something else. My friend cared and watched her mom dwindle before her eyes knowing that one day her mom might not even recognize her own daughter. But we didn’t talk about that, because anyone who is a caregiver knows that the end result doesn’t change. Everything else changes: the parent’s health, stamina and worst of all their memory. For the caregiver the changes are basically the same except for one major difference: our memory doesn’t forget. Each day we live through the disease and each day we watch a piece of our loved one slip away. The pain is deep and the only medicine is laughter, (forget the hot bath and the aromatherapy candles that so-called caregiver therapists suggest will ease the day’s worries away), and on occasion a nice glass of wine for me, for you out there pick your choice. Laughter doesn’t make the pain go away, it just makes it easier to tolerate.
So my friend and I laughed about the stories I have been posting on this blog and the ones I’m including in my book and she shared hers with me. It seems her mom didn’t quite get the notion that wipes are wet for a reason: to wipe clean something that needs wiping. Hence, she decided to hang the wipes up all over her house to dry and when my friend came home from work she was greeted with dried out wipes hanging from pictures, door knobs, and walls. I can imagine the simple explanation stated by this beautiful woman with the flaming red hair in a matter-of-fact manner all the while resting her hands on her hips in her Rita Hayworth stance, ‘They were wet. They needed to dry.’
I think, at times the pain of watching and waiting for this silent demon to win the battle is overwhelming. Yet, while there are many victims besides the afflicted that fall prey to this foe, we don’t have a red poppy or Memorial Day devoted to the lost because it is stories like the dry wipes and those I have written that have become their memorial and our red poppy.
This Blog is dedicated to Mae with fondest memories
Tuesday, May 31, 2011
Sunday, May 22, 2011
To Tell The Truth
For those true blue baby boomers you may remember an American television panel game show created by Bob Stewart and produced by Goodson-Todman Productions that aired from 1956 to 1968 called To Tell The Truth. There were four celebrity panelists who questioned the three challengers all claiming to be the real person in question. The celebrities got to ask each of the challengers questions and only the true challenger had to tell the truth. The other two challengers could lie. I, being a bonafide baby boomer grew up with this show and loved trying to tell who was lying and who was telling the truth. Today, in my house, I play this very same game only the contestants and the rules have changed to protect the guilty. You see, the only person who really knows what's going on is my mom and she has dementia.
Interestingly enough, she gets the truth right more than one might expect from someone suffering from loss of memory, but when she gets it wrong it's completely off the charts. For instance, yesterday mom asked me what day it was. I told her it was May 21st.
"My birthday is the 13th."
"I know, but that was in March."
"You weren't even here."
"What are you talking about. Your birthday was two months ago. All the kids were here. We even had an ice cream cake."
Her bottom lip was beginning to quiver. "No. You're lying."
Since, I was getting ready to go out to dinner I didn't want to belabor this conversation because she was going to bed and I didn't want her to get more upset. As she lay in bed I told her that we would celebrate tomorrow. She just moaned and turned her face.
I figured she would forget the next day, but I was wrong. When we were watching television in the afternoon she brought it up again. Why would she remember this conversation in its entirety? I asked her if she wanted me to do her nails and she said no because I forgot her birthday. Again, I didn't want to agitate her by insisting the opposite so I changed the subject and put a movie on that I thought we could all enjoy. Unfortunately, hallucinations and loss of memory are typical dementia symptoms, and you just never know when they are going to manifest.
Now I wonder why she couldn't remember that we did celebrate her birthday, yet only a few days ago an incident occurred which my mom had no trouble recalling. The replacement aide must have handled my mom too roughly and bruised both her forearms. My mother not only remembered which aide made the marks, but she could tell you all about how it happened. What was odd was the aide in question is so mild mannered and sweet to my mom, and the aide that my mom can't stand, who we all suspected to be the culprit, was, in fact, not the target in question.
To Tell You the Truth I honestly don't know what or whom to believe. I want to believe my mom because after all she is my mom. Yet, her memory tends to mix things up on a regular basis. Three aides, three different stories, all different from my mom's. Will the real offender please stand up!
Interestingly enough, she gets the truth right more than one might expect from someone suffering from loss of memory, but when she gets it wrong it's completely off the charts. For instance, yesterday mom asked me what day it was. I told her it was May 21st.
"My birthday is the 13th."
"I know, but that was in March."
"You weren't even here."
"What are you talking about. Your birthday was two months ago. All the kids were here. We even had an ice cream cake."
Her bottom lip was beginning to quiver. "No. You're lying."
Since, I was getting ready to go out to dinner I didn't want to belabor this conversation because she was going to bed and I didn't want her to get more upset. As she lay in bed I told her that we would celebrate tomorrow. She just moaned and turned her face.
I figured she would forget the next day, but I was wrong. When we were watching television in the afternoon she brought it up again. Why would she remember this conversation in its entirety? I asked her if she wanted me to do her nails and she said no because I forgot her birthday. Again, I didn't want to agitate her by insisting the opposite so I changed the subject and put a movie on that I thought we could all enjoy. Unfortunately, hallucinations and loss of memory are typical dementia symptoms, and you just never know when they are going to manifest.
Now I wonder why she couldn't remember that we did celebrate her birthday, yet only a few days ago an incident occurred which my mom had no trouble recalling. The replacement aide must have handled my mom too roughly and bruised both her forearms. My mother not only remembered which aide made the marks, but she could tell you all about how it happened. What was odd was the aide in question is so mild mannered and sweet to my mom, and the aide that my mom can't stand, who we all suspected to be the culprit, was, in fact, not the target in question.
To Tell You the Truth I honestly don't know what or whom to believe. I want to believe my mom because after all she is my mom. Yet, her memory tends to mix things up on a regular basis. Three aides, three different stories, all different from my mom's. Will the real offender please stand up!
Sunday, May 15, 2011
The Electric Chair
Just when I thought my well of stories might be drying up a new day dawns and a new story begins. That's the thing with caring for a person that has dementia, everyday is a new day and yesterday doesn't exist.
Today is Sunday and it rained all day. This kind of weather offers me little in the ways I can entertain my mom. Obviously I can't take her out so once again we are stuck in the house. If the sun was shining she could sit outside but not today. We are all stuck in the house in front of our new 50" TV. At times, Mom thinks she is in the movies and that works out well because it makes her feel as though she has gone out. Unfortunately, after the movie finishes she wants to leave.
"Ok, Deborah. Let's go."
"Go where Mom?"
"You know we have to go now. We can't stay here all day. I have to get home."
"Ok, mom. In a few minutes."
And than I put another movie on and so the story goes.
But, today it went a little different. First of all, I put on the Russell Crowe 'Robin Hood' and than I went out for about an hour and a half with my husband. By the time I got back Crowe was fighting the last battle of the movie and saving Maid Marion on the waterfront.
"Deborah. Deborah," she called as soon as she heard the door open and close. I honestly don't know how she could have heard the door with all that fighting going on in the movie. I like to think she has selective hearing.
"I'll be right there," and I walked into the living room to see her.
With the earnestness of a child when she discovers the surprise beneath a wrapped present she said, "This is some movie. You should see all that man does."
"I know Mom, it is a really good movie."
"Watch him." So, I sat down and caught the last fifteen minutes of Robin Hood, who happens to be my favorite outlaw.
I noticed once the credits were rolling, so was mom.
"Deborah."
"What mom?" I was putting a DVD in to keep the illusion going.
"I want to get off."
"What are you talking about," I asked with my back to her.
"I want to get down."
"Down. What are you," and than I turned to see what she was doing.
She had the remote from her chair in her hand and she was pushing the buttons up and down. She had the chair all the way back so her feet were way up in the air.
"Mom, what are you doing! Press the down button."
"I did but I don't know what happened. Here you do it."
So, I pressed the down button and she went forward till she was in a sitting position.
"Now, let's go. I'm done," she said so determined.
And she certainly was. I had to take the control from her and hide it in the pocket on the side of the chair. There will be no more rides on the electric chair for her today because the next stop just might have to be the Cyclone at Coney Island.
Today is Sunday and it rained all day. This kind of weather offers me little in the ways I can entertain my mom. Obviously I can't take her out so once again we are stuck in the house. If the sun was shining she could sit outside but not today. We are all stuck in the house in front of our new 50" TV. At times, Mom thinks she is in the movies and that works out well because it makes her feel as though she has gone out. Unfortunately, after the movie finishes she wants to leave.
"Ok, Deborah. Let's go."
"Go where Mom?"
"You know we have to go now. We can't stay here all day. I have to get home."
"Ok, mom. In a few minutes."
And than I put another movie on and so the story goes.
But, today it went a little different. First of all, I put on the Russell Crowe 'Robin Hood' and than I went out for about an hour and a half with my husband. By the time I got back Crowe was fighting the last battle of the movie and saving Maid Marion on the waterfront.
"Deborah. Deborah," she called as soon as she heard the door open and close. I honestly don't know how she could have heard the door with all that fighting going on in the movie. I like to think she has selective hearing.
"I'll be right there," and I walked into the living room to see her.
With the earnestness of a child when she discovers the surprise beneath a wrapped present she said, "This is some movie. You should see all that man does."
"I know Mom, it is a really good movie."
"Watch him." So, I sat down and caught the last fifteen minutes of Robin Hood, who happens to be my favorite outlaw.
I noticed once the credits were rolling, so was mom.
"Deborah."
"What mom?" I was putting a DVD in to keep the illusion going.
"I want to get off."
"What are you talking about," I asked with my back to her.
"I want to get down."
"Down. What are you," and than I turned to see what she was doing.
She had the remote from her chair in her hand and she was pushing the buttons up and down. She had the chair all the way back so her feet were way up in the air.
"Mom, what are you doing! Press the down button."
"I did but I don't know what happened. Here you do it."
So, I pressed the down button and she went forward till she was in a sitting position.
"Now, let's go. I'm done," she said so determined.
And she certainly was. I had to take the control from her and hide it in the pocket on the side of the chair. There will be no more rides on the electric chair for her today because the next stop just might have to be the Cyclone at Coney Island.
Monday, May 9, 2011
Mother's Day NO. 72
The Midget, my mom, was 92 this year and that makes a total of 72 Mother's Days. Seventy-two bouquets of flowers, seventy-two plus cards expressing hallmark sentiments dripping with nostalgia and sweet nothings, seventy-two days of movies about mother's. Yesterday was no exception.
I once told my children that the one nearly constant I have found in Disney movies is the fact that the mother always dies or has died already. Take a look at Bambi, tragic; The Litter Mermaid, Cinderella, Snow White (if her mother was alive would she be living in the woods with 7 little men?), Pocahontas, Beauty and the Beast, just to name a few. Do they show these movies on Mother's Day? I think not.
On the adult level we have Turner Classic Movies that dedicated yesterday's schedule to movies about mothers. These mothers have either harassed their children, given them up for adoption, abandoned them, or worse beaten them with coat hangers. Now why would TCM want to spend a day of tribute to mothers by showing Mildred Pierce a movie with an ungrateful daughter, Gypsy, a movie about a mother who pushes her daughter too hard, Stella Dallas, a movie about a mother who gives her daughter up because she is made to feel unworthy to raise her child, or Imitation of Life where the daughter resents her mother because she wants to pass herself off as white but her mother won't let her. Do you see a pattern here? Mothers and daughters and their complicated relationships brought to the forefront on television on mother's day. Why? And what happened to the sons? Oh, they became presidents!
Personally, I don't get it. On the news the other night, a newscaster reported that mothers do approximately 10 different jobs for which their salary was computed by Mom.salary.com to be between 63,472 and 115,432 depending on whether they also work outside of the home. In 2007 CNN reported that a stay at home mom's salary for motherhood would be approximately 138,095. So, not only did our salary go down but the picture the movies paint of us is pretty bleak.
I for one believe that you can't put a price on motherhood (even though men have tried), and yesterday was proof of that. My mom, has lived through 72 mother's days and yesterday was no exception except that with dementia she probably doesn't remember the other 71. Yet, for the moment it was better than a Disney movie or a TCM classic and for better or worse neither CNN nor Mom.Salary.com can attach a monetary figure to it.
I once told my children that the one nearly constant I have found in Disney movies is the fact that the mother always dies or has died already. Take a look at Bambi, tragic; The Litter Mermaid, Cinderella, Snow White (if her mother was alive would she be living in the woods with 7 little men?), Pocahontas, Beauty and the Beast, just to name a few. Do they show these movies on Mother's Day? I think not.
On the adult level we have Turner Classic Movies that dedicated yesterday's schedule to movies about mothers. These mothers have either harassed their children, given them up for adoption, abandoned them, or worse beaten them with coat hangers. Now why would TCM want to spend a day of tribute to mothers by showing Mildred Pierce a movie with an ungrateful daughter, Gypsy, a movie about a mother who pushes her daughter too hard, Stella Dallas, a movie about a mother who gives her daughter up because she is made to feel unworthy to raise her child, or Imitation of Life where the daughter resents her mother because she wants to pass herself off as white but her mother won't let her. Do you see a pattern here? Mothers and daughters and their complicated relationships brought to the forefront on television on mother's day. Why? And what happened to the sons? Oh, they became presidents!
Personally, I don't get it. On the news the other night, a newscaster reported that mothers do approximately 10 different jobs for which their salary was computed by Mom.salary.com to be between 63,472 and 115,432 depending on whether they also work outside of the home. In 2007 CNN reported that a stay at home mom's salary for motherhood would be approximately 138,095. So, not only did our salary go down but the picture the movies paint of us is pretty bleak.
I for one believe that you can't put a price on motherhood (even though men have tried), and yesterday was proof of that. My mom, has lived through 72 mother's days and yesterday was no exception except that with dementia she probably doesn't remember the other 71. Yet, for the moment it was better than a Disney movie or a TCM classic and for better or worse neither CNN nor Mom.Salary.com can attach a monetary figure to it.
Monday, May 2, 2011
Please Hold
The phrase I detest more than any other phrase besides, "Mom can I have money", is 'Please Hold'. Today it seems that these two words are at the end of almost every call I make having to do with a city, state or government agency and that's only if I can get past the recording. There are two city/state agencies that deal with home health care. If you need a home health aide for a family member you will probably deal with either the Visiting Nurses Association (VNA) or Visiting Nurses Services (VNS). These agencies find the aides and send them to your house. These aides come complete with directions on what they can and cannot not do for the patient and believe me the list of what they cannot do is endless.
Eventually after coming to your home for a period of weeks, months or even years, they assimilate into your family and I don't know exactly when it happens but their presence in your home, at the dinner table, at birthdays, holidays and barbecues erases the fine line between employer and employee. They become almost like family and that's when the fun begins. When they don't show up for whatever reason like sickness or getting arrested (I kid you not) the agency sends a replacement. I can usually set my clock by the time the aides arrive so when they don't call or show up by a certain time I know something is awry and that's when I start calling the agency.
"Please hold." I am certain that the music they play while you are on 'hold' is picked because it slowly drains you of your patience, than your sanity and than they figure you'll hang up. But not me. Oh no. It only serves to incite me more and the longer I have to wait the worse my dander gets. By the time someone answers the phone I have about ten seconds to get out what I want to say and than I hear, "Please hold." At this point I have managed to say my mother's name before the music comes back on.
The next voice I hear is different from the first and she says, "Can I help you?"
"Yes, I am calling about a replacement aide for my mom..."
"Please hold," and the music is back on.
At this point my incisors are growing like Edward's in Twilight, my nails are protruding like that of Wolverine and I am gripping the phone as if I was in the Javelin competition of the Olympics. It's lucky for them I didn't acquire the metaphysical capabilities of the invisible man or else I would have transported my self across the phone wires into their offices and broken that record!
By the time someone had come back on the line I had gotten my mom up, bathe her, dressed her and gone out for a walk! Well not exactly, but close.
I know staffing is difficult for these trying jobs. First of all, you don't have to speak English, secondly, you don't have to know anything about anything that is remotely connected with the workings of the agency, and lastly, you don't have to be responsible, you just have to know how to pass the buck and say, "Please hold!"
Eventually after coming to your home for a period of weeks, months or even years, they assimilate into your family and I don't know exactly when it happens but their presence in your home, at the dinner table, at birthdays, holidays and barbecues erases the fine line between employer and employee. They become almost like family and that's when the fun begins. When they don't show up for whatever reason like sickness or getting arrested (I kid you not) the agency sends a replacement. I can usually set my clock by the time the aides arrive so when they don't call or show up by a certain time I know something is awry and that's when I start calling the agency.
"Please hold." I am certain that the music they play while you are on 'hold' is picked because it slowly drains you of your patience, than your sanity and than they figure you'll hang up. But not me. Oh no. It only serves to incite me more and the longer I have to wait the worse my dander gets. By the time someone answers the phone I have about ten seconds to get out what I want to say and than I hear, "Please hold." At this point I have managed to say my mother's name before the music comes back on.
The next voice I hear is different from the first and she says, "Can I help you?"
"Yes, I am calling about a replacement aide for my mom..."
"Please hold," and the music is back on.
At this point my incisors are growing like Edward's in Twilight, my nails are protruding like that of Wolverine and I am gripping the phone as if I was in the Javelin competition of the Olympics. It's lucky for them I didn't acquire the metaphysical capabilities of the invisible man or else I would have transported my self across the phone wires into their offices and broken that record!
By the time someone had come back on the line I had gotten my mom up, bathe her, dressed her and gone out for a walk! Well not exactly, but close.
I know staffing is difficult for these trying jobs. First of all, you don't have to speak English, secondly, you don't have to know anything about anything that is remotely connected with the workings of the agency, and lastly, you don't have to be responsible, you just have to know how to pass the buck and say, "Please hold!"
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