Long Time No Hear

I know it's been a while, to say the least, since I've blogged about my mom and life in Dementiaville.  I have successfully made the transition from one Home Health Agency to another.  As far as the agencies go I honestly don't think you need more than an eight grade education to run them.  I have never spoken to more incompetent people in one place than these agencies that are supposed to have your ailing parent, spouse, whatever in their best interest.  The only interest they are concerned with are their own.  The administrators should be made to do the job these aides do and the aides should be forced to go to school with structured classes on how to take care of patients.  It is a thankless job, I know because I do it when they are not around and I have lived it every day for the last two years.  The aide we have now is wonderful, and she is even teaching my dogs Spanish.  She also has my mom playing on an IPad, something the other aides would never have done, one because they don't have one and two because they probably wouldn't know how to use one.  It is some penguin game that makes sounds similar to the original Mario Brothers on the original Nintendo.  My mom has actually beaten the aide several times.

So the midget has become an IPad officiando but can't walk, barely speaks anymore and more often than not carries on the most bizarre conversations.  Just to give you an idea of what life is like at the ole' homestead of crazy, when I come home from work in the late afternoon whatever she is watching on television has become her reality.  If I don't remind the aides or my family to turn the lights on come 3:30 in the afternoon, my mom loses herself to whatever is going on on the big screen.  One day I came home from work and she called me into the living room to tell me it was raining.  Of course it was a perfectly warm Autumn day, but on the big screen it was pouring.  One day she told me to call the police because a man was hurt.  And my personal favorite was when she told me to saddle up the horse.  "Okay," I said, "but can we wait until after dinner."  She agreed.  I told the aide, "No more Lifetime movies." Although when she watched the movie, Secretariat, she asked me to place a bet and than wanted her winnings after the horse won.

I have to admit that watching her slowly go in and out of reality is difficult. Sometimes the only way to communicate is to join her in her world.  Even though the new aide is pleasant and takes care of mom better than some that have come before her I'd be lying if I didn't say that the lack of privacy in my house is wearing on my patience.  My only saving grace is that I now teach four days a week so I am not home as much during the day.  Yet, when I am home I can't get any work done, hence I find myself going to work earlier and staying later.

There are days when my mom can remember what it was like to listen to Mussolini talk in the square in Vittoria, Italy.  She told my family one day that she had to wear a box type hat with a black tassel hanging from one side as she marched with the other children from her school.  While she only lived in Italy a few years she remembers those days like they were yesterday.  But each afternoon she can't remember that she lives with me and my family in my house.

There is no telling how long or how quickly this disease will take before it closes the door back to reality permanently.  It is a silent thief that robs the victim of today and tomorrow and as it progresses it leaves but mere shell fragments of yesterday in its wake.

Hello, it's me?

Up until a few weeks ago my mom's sleep patterns were interrupted due to noise in the house, sugar in the form of dessert too close to bed time, and all around not giving her the magic pills early enough before her head hit the pillow. These waking moments of hers served as a scary yet hilarious joke on my son and his girlfriend.
Let me set the stage:

My mom's bedroom is located next to the everybody bathroom on the first floor.  So on the way to el bano, you must pass mom's room.  One night after watching a horror flick which is what these crazy kids like to do before going to sleep, in the middle of the night when nature called, D made her way to the bathroom.

Everyone else in the house was asleep; you could hear the dogs snoring in the hall.  All was quiet except for the usual noises that accompany a 30 year old house, the creaks, cracks and... suddenly...

"Hellooooo."

D stopped dead in her tracks.

"Hellooooooooo."

As she made her way towards the bathroom the sound which resembled a weak howl was heard again.

"Hellooooooo, it's me."
D froze mid-way between going into the bathroom and the hall outside my mom's room.  With her hand on the door knob she didn't know whether to run in or away.  It was dark, the noises got louder; she ran, bursting in the bedroom terrified.
Alex got up and went to investigate.
"Helloooo.  I'm here.  It's me."
Alex opened the door.
"What's up Nan?"
"Oh, what are you doing here?  I have to go now."
"Nan, where you going?  It's nighttime, you have to go back to sleep."
"What are you crazy, I have to make the coffee."
(At least she didn't say she had to make the donuts!)
The conversation continued along the same lines.  She wanting to get up and make the coffee and get things ready because her brothers (all past on) were waiting or whomever else she had envisioned being there with her at that moment.  She tried in vain to get out of bed and that is what probably exhausted her back to sleep.
And as quickly as she had awakened, she just suddenly passed out.
As for D, her night did not pass so peacefully.  D refused to return to the bathroom unaccompanied that night and continues to have trepidations about midnight bathroom runs.

You're outta the woods, you're outta the dark, you're outta the night...

Recently, I have made some changes to my mother's environment.  The aides have changed and so has the agency from which they came. Let's hope this agency will prove to be more organized.  I sometimes wonder if you need any education at all to man these agencies?  For instance, speaking English, I don't believe is a necessary requirement nor is having any organizational skills.  I know that the coordinator of these programs must put together a schedule for dispatching aides to various locations and I would think organizational skills are mandatory, but on more than one occasion an aide has not been notified to come to my house when the permanent aide has called out.  Hence, after two years of dealing with constant miscommunication I was advised to change agencies; so, I did.  Unfortunately, so did the dispatcher.  Hopefully, she did not go where I went; wouldn't that just be a kick in the head!

I took my mom to see her neurologist last week.  Doctor Gorgeous, not his real name but certainly an accurate description, is one of the kindest doctors I have met in dealing with my mom’s illness.  He makes himself accessible to me through emails which works better than taking her to visit him because she becomes disoriented when her routine is disrupted. I keep him up to date on her condition via email, not as much fun for me, but better for her.  This last visit took two days to get over because for some reason she thought she was going for a haircut and when that didn't transpire she berated me for not doing anything for her.  I wish he could have given her a little trim it would have saved me from her wrath.

As per his suggestion,  I  stopped the Seroquel but kept the Zyprexia.  Unfortunately, she has gotten up three out of five nights trying to get out of the bed.  Sometimes I think if it isn't broken than don't try to fix it.  Same thing with the changing of the aides.  Although one had to go, the other one did have a connection with my mom and my family.  Since she's gone, and the new aide who is really nice has taken over, mom doesn't really speak too much, nor does she engage in conversation like she used to.  I'm not blaming it on the aide, I think she might be depressed, I know I am.  I also think this is a natural progression of the disease and/or a reaction to change.  Am I right or does life suck?

Lately, her mouth is more often than not filled with saliva and runneth over like Niagara Falls, and her knowledge of where she is has greatly diminished which at times works to our advantage.  When we watch Secretariat she insists on placing a bet and than she wants to know how much she's won. Any movies shot in other countries or periods transports her there faster than the Concorde.  While she is able to feed herself she doesn't realize how much is going into her mouth. When you talk to her she nods, but very little conversation takes place.  If I ask her why she doesn't say anything she tells me, "What do you want me to say?" Or, "I'm not ready."  Boy, I wonder what she's going to say when she is ready?

"We're not in Kansas anymore?"

The Inmates are Running the Asylum

Frederick Loren: Once, the door is locked, there is no way out. The windows have bars the jail would be proud of and the only door to the outside locks like a vault.
House on Haunted Hill   1959

The Inmates are running the asylum: Thus begins my description of the home health aide agencies that service the five boroughs of New York.  One in particular, which shall remain nameless, services my mother’s needs on a daily basis for twelve hours a day.  She receives one aide for three days and one for four each coming with their own brand of expertise and what that is I still haven’t quite figured out after two years.  What I have realized in as many months is that the nicer you are the easier it is for them to take advantage of you and yours.
In the last two years I have had several different full-time aides come into my home, eat at my table and take part in family events and holidays.  In as many years I have had the displeasure of discharging several of them because I realized that they would rather be my friend and chit chat than take care of an old woman with Dementia and Parkinson’s.  I can’t say I envy their jobs and that is why I NEVER EVER wanted to become a nurse.  Being a caregiver for my mother was not one of my life long desires, however, it was a choice I accepted and on those days when the aides show up late and I have to bathe and take care of my mom, I do.  It is not easy, but in my house with internet, flat screen TV’s, a full refrigerator and dinner made for you, it’s not so bad.  I might also add that in most cases I do the wash and iron my mom’s clothes, I cook dinner or pay for take-out, clean and clock them in early so they can leave early.  Yet, somehow they still manage to run the show.
Just recently the aide that used to come four days now comes three and is taking the month of August off.  I asked the other aide who is on the four alternate days if she would take over the days of the other aide so I could replace the alternate days with someone who is familiar with taking care of my mom.  It would mean that instead of working Wednesday, Thursday, Friday and Saturday, she would work Sunday, Monday, Tuesday Wednesday.  I explained that if she would do this for me for one month, I would be able to have another woman who I know and can trust.  After waiting several days for an answer I asked again and was told “No.  I don’t work on Sundays.”
I suggest that I would accept whomever they send on Sundays, could she please just do the other three days.
“No,” was her final answer.  Three days later she asked me if she could bring her granddaughter to my house.  I said yes and the seven year old swam in my pool while she talked on her cell phone.  Now some might agree that I was too nice, but I know if I had said no she would have called out and who knows whom the agency would have sent.  My kitchen is under repair and the less confusion around my mother the easier it is for all concerned.  So I let this episode slide by for the moment.
The aide that is going on vacation is no longer speaking to me because she said I yelled at her.  Let me explain.  Why I even have to address this issue in the first place is one, for my own sanity; two, because anyone who is in a care giving position will learn from my mistakes.
On Saturday my kitchen tile floor was just laid down and no one could walk on it.  The following morning, Sunday, the aide called at 6:40 am to remind me to clock her in (she really is not supposed to come until eight am.)  Mistake number one: I have allowed this inconvenience to perpetuate because I thought she had my mother’s best interests at heart and I felt sorry that she had to travel from East New York to Tottenville.
“Good morning, Debbie. Can you clock me in?”
“Okay, but you can’t come in the front door.”
“What did you say?”
“You can’t come in the front door because the tile…”
“I can’t hear you the bus is making too much noise.”
Now I am yelling, “You can’t come in, just call when you…”
“What, I can’t hear you.”
“Forget it.” I hung up and figured that the door was locked anyway so she would have to call once she got here.  What I didn’t figure on was her attitude once she arrived.
She wouldn’t talk to me or to my mom.  She didn’t say more than ten words to my mom the whole morning.
“What wrong ----?”
“You yelled at me.  There was no reason to yell at me.”  I was stunned.  I tried to explain but she would hear none of it.
Later that day I came in from the pool to make dinner for my mom and her and I found my mom sitting in her wheelchair slouched over to one side amidst all the kitchen cabinets that were stacked up in the living room.  The aide was sitting in a chair about three feet in front of her watching the television.  This was not the first time I have found the aide either sitting in front of my mom or in back of her.  With the limited eyesight that my mom has left, when she can’t see anyone next to her she thinks she is by herself.
Once again I asked the aide what the problem was and she said, “You always find fault with me but not with your mother.”
“My mother is 92 years old with the latent stages of dementia and Parkinson’s and nearly blind.  What fault do you want me to find with her?  She spits too much that is a condition of the Parkinson’s.  If you would read up on her illnesses you might come to realize that she is not doing this on purpose as you have pointed out to me on as many occasions as possible, but these are symptoms of her condition.  Why I have to explain myself to you or to anyone else is beyond my understanding.  If you don’t think you can do the job or you have had enough I understand.  I realize it is not an easy job.”
All the while I’m thinking: Of course what a difficult job this is: you get to sit on your - - - and watch my Television and eat my food and talk on your cell phone, and tell me what you want from the Chinese restaurant.  Yes, I know.  This is a really hard job.

Can You Hear Me Now?

I've been away for the past two weeks hence, my absence from this blog.  While many of my casual viewers may not have realized that I've been missing, my loyal followers may have wondered, "Where did she go?"  To all of you a simple explanation of summer vacation will suffice, but to my mother no seasonal directive will do.

After being MIA for five days, hidden in a small alcove of the Hampton's, I get a harried phone call from my husband.
     "Your mother is refusing to eat her dinner or take her pills.  Just talk to her."
I knew this would eventually happen.  As soon as I go away for any length of time, longer than a few hours, my mother begins to panic.  She loses her bearings, no longer remembering her surroundings.  Her security has been tampered with and her cognitive ability to understand what everyone is saying to her diminishes into the black hole of fear.
     "Okay.  Put her on."  I know how this conversation will play out all too well.  Been there, done that.
     "Here Mom.  It's Debbie.  You know your daughter." If I had Skype I would be looking at my husband trying to hand the phone to my mother.  My mother would be putting the phone to her neck missing her ear by at least three inches.
     "Hi Mom."
      "What?"
     "Mom put the phone by your ear." I can here the rustle of material mixing with the phone. "Can you hear me now?"
     "Yes, but you know they are all lying to me these sons of bitches.  They trying to tell me you are not getting married today.  You would not believe what they are doing to me!"
     "Mom, please listen to me.  Can you hear me?"  I know the phone has fallen back down to her neck.  Why someone on her end is not monitoring this chaos I can't even imagine.  There are six people in my house and they call little ole' me to calm her down.
     "Mom, can you hear me now?"  I am practically screaming loud enough to drown out the trucks speeding down Montauk Highway.
     "I am at my friend's house with her daughter and Christina, my daughter, your granddaughter.  I will be home tomorrow."
     "So, you are not getting married today? They are all lying to me."
     I can hear the distress in her voice.  "Don't worry about it now Mom.  Tomorrow we can talk about it."
     "What?"
     "Mom, can you hear me now?"
     "Oh, yes I can hear you now.  But aren't you getting married?"
     "I am already married to Brian.  He's there with you now."
     "Yes, but you don't know what they're trying to tell me.  You were suppose to get married and then this one over here, what's her name, you know?  She take me in and took my clothes and put my pajamas on and took my teeth. Oh, why did you leave me here? I don't know what to do."
     "I know Mom.  Listen to me."
     "What?"
     "Listen to me!  I will be home tomorrow and we can talk about all of this then.  Now just relax.  You know I wouldn't get  married without you? I will see you tomorrow.  Love you. Somehow I feel like Scarlett at the end of 'Gone with the Wind', and we all know how that turns out!
      "What?" The phone went dead. Not ten seconds later my phone rings again.
     "Deb, why did you hang up," my husband asks?
     "I didn't, I thought she did."
     "Well, would you just please tell your mother to take her pills because she is still refusing."
     "Sure, put her back on."
     "Mom? Can you hear me?"
     "What?"
     "Please take your pills.  I will be home tomorrow and I will take care of everything.  Just take your pills for me.  Okay?"
     "Okay. But when you come back I'm not staying here anymore," she said emphatically.
     "If that's what you want we will talk tomorrow.  Now take your pills.  Love you.  Bye."
I could hear my husband telling her, "One more.  That's it.  Great Mom.  See that was easy."
     "Deb," my husband whispers.
     "Yes."
     "We have lift off!"
     "Thank the lord!"
About an hour later I got a text. "She is sleeping."
     Ah!



  
  

Margarita straight up with salt, PLEASE!

This past week I had three birthdays in my house to celebrate and three different birthday cakes to make or buy.  OK, so I am a bit indulgent when it comes to my kids.  In any case, the weather was beautiful and hot and it made us thirsty, even mom.

"I want one too," she ordered when she saw the margarita glasses come out and the smoothie maker motor begin its familiar summer chant. Rrrrrr, Rrrrrr roared the motor throughout the house, sounds of delight and promise to quench the thirst of a sweaty sunbather or in this case a 92 year old grandmother with nothing but time on her hands.

When the drinks were dispersed we poured some into a small brandy glass for mom.
"Why is my glass so small?  I want one of those," she said as she pointed to the colorful margarita shaped glasses.
The aide quickly replied, "Jean, that's too much for you to drink.  It has alcohol in it.  It don't go good with your medicines."
"I don't care," mom barked.  "I want what they're  having."

At first I was inclined to agree with the aide, but quickly realized that at 92 she could have whatever she wants (in moderation of course).  However, I soon came to regret my good intention.  If Ringling Brothers was looking for a new main attraction for the center ring, my dinner table last Sunday would get top billing.
"Whoopee! Whoopee!," she resounded as she waved her margarita glass in the air over and over again.  It was so comical that my son posted his dear ole' nanny on U-tube.
I guess tequila and anti-depressants actually aren't such a good idea, or are they?  Judge for yourself. Click Here
I know one thing for sure, she slept like a rock or maybe it's like someone hit her over the head with a rock.

Guess Who's Coming To Dinner?

This week has been unbearable in terms of the heat index.  The thermometer registers 95 but the heat index reads 102 and the hair on my arm fries on the walk from the front door to the mailbox.  Needless to say mom can't go outside.  She doesn't go out when it's too cold or if it is raining because she has a phobia about rain.  She can't go out if it's too hot because dehydration is a threat especially when the aides forget to give her water on an hourly basis.  Hence, this past week not only has the heat index been unbearable but so has living in my house.  There is nothing worse than being cooped up indoors with the sun shining outside.

Throughout most of the winter the dinner table, on any given night had at least five people at it, more like six or seven.  Since the heat wave began barbecues are back in fashion and once again the open door policy applies.  I think perhaps I have as much if not more traffic at my dinner table than the border guards at Tijuana.  You just never know who's coming for dinner.  Add another burger, toss another dog on the grill; what's one more person at the table other than company for mom.  And it's true, the more people around her the more alert she is and while she still gets lost in the story of a movie (I have to admit I do the same thing if it is an oldie but goodie), she still keeps up with the conversation.  Just when you think she has gone over to the other side, as the ricotta from the calzone drips down the side of her mouth and Smalls and Nathan eagerly await the droppings, she joins in on the conversation; she doesn't miss a beat, unlike the morsels that are banished in the abyss under the table.

Today had two elements which kept mom in the house: rain and heat.  These were also perfect excuses for me as well.  I very rarely get to lie like broccoli in front of the TV without interruption.  The rest of the family was away and only mom, me and the aide stayed home with the dogs of course.  It was the perfect day to get lost in a movie or several as our day played out.  We followed, unknowingly at first, a central theme that of traveling to Tuscany.  First we watched Under the Tuscan Sun about a writer who goes to Tuscany to get over her heartbreaking divorce and ends up buying a villa and setting up house.  The second movie was Letters to Juliet, another movie about Tuscany and old love revisited.  Lots of Italian was spoken during the movies but especially the first one and while my mom's eye sight is vastly diminishing her hearing is sharp as a tack and she understood every Italian word spoken.  She became our official translator (even though there were subtitles in most cases).  It was an interesting day for traveling considering we never left the living room and Mom was happily exhausted.

It's days like these when the weather outside keeps us inside forcing us to co-habitat and reminds us of   how our lives are rushed and filled with mundane urgencies that we forget to stop and smell the flowers of spring and than they are gone.  We run to the grocery store, the dry cleaners, the drug store, buy and buy and stockpile and in the end these things that we buy don't sustain us, they don't feed our intellect or our family pool.  It is days like today with the rain and the heat that force us to sit and renew our motives for getting up every morning and starting a new day.  And as long as we are unwittingly blessed with nature's excuse for a family gathering mom will continue to travel to far off distant places and wonder who's coming to dinner?

For Those We Left Behind

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 
                                                             

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!

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.

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.

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!"

Deborah doesn't live here anymore

I am so tired lately from getting pulled in all directions: my mother, the aides, contemplating redoing the kitchen, getting dinner on the table, cleaning the house, doing the laundry all the usual stuff that goes on in everyday households. There just doesn't seem to be enough time in the day for all of this and play Bridge!

Let's look at my dilemma.  The cleaning, cooking and laundry is normal, but adding my mom and the aide into the mix just about puts me over the edge.  Aides are suppose to keep the patients general area clean.  They are to bathe and dress the patient, cook and in some cases, when necessary, feed the person too.  I have taken over cooking dinner because I have family living in the house, however, sometimes my family is not around and I would be content to just eat a salad, or an omelet.  That isn't good enough for my mom.  When I try to pass off a meal like that or order out she complains about the poor food in the restaurant (my house).  Cleaning her space is the aide's responsibility, but since it encroaches on everyone else's space it's a battle not worth fighting.   However, my mom's bedroom should be the aide's responsibility, but I have learned that you fight the battles you can win and this one just isn't as important as some of the other issues like the bathing and feeding.  Forget about keeping mom engaged.  One of the problems with dementia patients is that they don't concentrate on any one thing for any real length of time.  If they like 40's music that's fine for a while, but I have put the music on in the morning and gone out and come back late in the afternoon to find them still sitting in the living room listening to the same station.  I know I would go crazy and I don't have dementia imagine a person that is locked in limbo.

I don't work full time anymore.  It seems this is a common situation for caregivers.  Statistically, more than half of caregivers either quit or lose their jobs within the first two years of taking over the care of a parent or family member.  Caring for a parent is a full-time job even if you are not the one bathing and dressing them.  There are days, however, when the aid calls out sick and a replacement is unavailable, so I have to take on the duties of the aid.  Sometimes it is just easier for me to do it because at least my mom is not always calling my name.

When my mom first came to live with me almost two years ago she always called me by my sister's name; maybe because she'd older and her visits are a big todo because she doesn't live close by. It used to make me angry because I was always doing the grunt work, yet she couldn't get my name straight.  I thought mom was just being difficult, but things have changed since she moved in with me and my family and now I want to change my name!  Familiarity is the culprit especially with someone who has dementia.  They hang on to everything and everyone because forgetting is frightening.  Be careful what you wish for it may come true and than you'll find yourself wishing your name was anything but what it is.

She calls me constantly; it doesn't matter if the aide is sitting right next to her mom will call me to come in from the next room, or upstairs, or wherever to get her a tissue which is on the table right next to her chair.
If I go out, I don't make it entirely in the front door without hearing, "Deborah.  Deborah." She can sense when I'm in the house.
I told her today, after she insisted that I come into the room and than she asked me for a tissue, that I was going to change my name.
"To what?" she asked.
"Oh no, I'm not going to tell you."
"But than how am I going to call you?"
"Exactly my point!"

I want to tell her "Deborah doesn't live here anymore,"  next time she calls my name, but I don't think she would get it.  She would probably ask me where I moved to and than I would have to explain and explain and tomorrow I would have to explain all over again when she sees me in the house.

The Midget

Today is Easter Sunday and I always put together baskets for my overgrown adolescents, their husbands, boyfriend, girlfriend and now my mom, aka The Midget.

The Midget, as she has become affectionately penned by my daughter and known to my children's friends and college buddies all over the country, got her first singing bunny rabbit and a Pez dispenser today. We listened to the big pink bunny sing and flap its ears through most the afternoon.  
She sat in her recliner in the living room with the bunny on her lap, Smalls at her feet, all the while sporting her golf visor and dark sunglasses.  She reminded me of Hyman Roth, the mob boss in The Godfather as he sat with Michael Corleone on his terrace in Miami discussing the future of gaming in Vegas.  Michael had the nickname 'The Don' and Jeanne earned the nickname 'The Midget'.  Four-foot noting, but like Hyman, you don't screw around with her.  There is definitely something eerie watching her sit with her pink bunny, her Rottweiler and her Pez dispenser offering candy from her basket to each of her grandchildren as they came into the room.
At one point she called my son-in-law over and showed him a small yellow candy egg.  "Do you want this," she asked?  "No, thank you," he answered.  So, she put the egg in her mouth.  The look on her face should have prepared him for what happened next. Her lips curled down like you do when you are about to spit your food out and that's exactly what she did, directly into his hand.  What could he do?

I don't know why he is always the target of my mom's weirdest moments; perhaps it's because he is soft spoken and seems like a push over, an easy mark.  Nevertheless, he was left to discard the yellow candy egg The Midget didn't want!  After all who is going to argue with a 92 year-old wearing a golf visor and dark sunglasses in the middle of the living room with a pink bunny on her lap?
Besides the bunny, her next favorite easter toy was her Pez dispenser.  I gave her a yellow duck.  After a few tries she got the hang of it and began pushing on the back of the duck's neck so it would tip up and a candy would pop out.  As she tipped it up she whispered, "Quack, quack," and a miracle occurred, the candy popped out.  "Wow!  It talks back." Seriously, I can't make this stuff up.  It's too rich!  Jay Leno should come to my house.  The material around here never dries up.

As I have read and researched the various things that happen as you age the one thing that keeps coming back to mind is the old adage, 'life comes full circle', and my house is living proof.  I don't have to have easter egg hunts for my kids anymore, and in their baskets they prefer lotto cards to candy (except for Reeses), but because of The Midget the Easter Bunny still lives on at my house; she has brought the child out in all of us this year.

Pizza Again!

Today I went shopping for kitchen tiles and cabinets, and also spent the better part of the evening arguing with Bell Audi over my A6 '06.  It has been in service more than 300 days in the last three years.  Even my mom who has dementia knows the service history of my car.  It is amazing that she can remember when my car is in service and she can't remember from day to day that she is sitting in my living room and not a fancy hotel where the service is good but sometimes the chef is not in so she has to eat pizza.

Yes, you guessed it.  I am the chef and tonight we ate pizza.  It's not that she doesn't like it, but she would rather eat calzone which I ordered as well.  The aid tried to cut my mom's slice, but she would have none of that.  After all my mom is Italian and more importantly a Sicilian!  Obviously, the aid is not Italian, and worse than that is not Sicilian.  I'm sure you can guess who won this argument.  Don Corleone has nothing on my mom, dementia or no dementia.  Crazy Joe Gallo wasn't half as crazy as Jeanne, my 92 year-old mother.
As we ate, Smalls, the rottie, was in the kitchen, which is not the norm, but tonight I forgot to put the gate up.  He was under the table with his head between Jeanne's legs trying to catch the morsels of food that escaped my mother's dentures.
"Can you believe this guy," my mom says.  "What does he think I have there, food?"
It was so hard for any of us to keep a straight face.  We never know whether we should laugh or cry because she is just so funny in her simple innocence.  In the meantime, Nathan, the dachshund is under the table under her chair waiting for the droppings that Smalls misses.  The scene was like watching Cirque du Soleil - The Crazy Edition.  I could sell tickets for seats at my dinner table.  It's better than the Marx brothers falling out of a closet.

Anyway, tomorrow night the dogs shall remain in the hall during dinner.  At least this way we can avoid a three ring circus from occurring under the table.

Now for a little levity

One of the side effects of some of the meds my mom is on is constipation.  We (the aids and me) have to be very careful what she eats and the aids (I relinquish this duty - no pun intended) have to keep track of how many times my mom has a BM (bowel movement) for those of you who do not have children.

So last week my mom was having a hard time (again no pun intended) having a movement.  I think you get the gist of it now.  When the moment finally occurred she or it plugged up the toilet bowl.  Thank goodness for the trusty ole plunger.  Alas, after a few pushes, of the plunger that is, all was clear and ready for use.

Well today my mom is calling my name, yelling my name.  I come running into the room, "What! What are you yelling about."

"Take me inside." 

"Inside where?"

"In the bathroom."

So naturally I tell the aid my mom needs to go to the bathroom.

"No.  I need to fix it."

I'm confused at this point.  "Fix what?"

"I have to plunge the toilet. Take me."

Laughing I said, "Mom, the toilet is fine.  You don't have to.  It's all fixed."

"Deborah, Deborah, I have to fix it.  I just want to plunge it."

I had to walk away because I knew she wouldn't stop.

My son walked in the room not two minutes later.  "Alex,

 come here."

"What Nan?"

"I have to go inside.  I have to fix the toilet."

After asking everyone is the house to take her to the bathroom so she could plunge the toilet I realized that the culprit was my husband who came home from work and asked her, "So Mom, did you clog the toilet again?" 

He left the rest of us to clean up the mess.

Just another day in the life of the ham between the bread.

The Sandwich Generation

When my mom moved to New York seven years ago I thought it would be easier to maintain her health and well-being because she was close by.  What I didn't figure on was who was going to help maintain mine?  Why is it so difficult to for a child to take care of an aged parent when a parent can take care of a house full of children?  In the past the role of a woman was to take care of her family, raise her children, maintain her house and love her man.  Today a woman has to work in the rat race of jobs, raise children in our ever declining educational system, maintain a household and somehow find time to keep the marriage alive.  Wait... that's not all.  Let us not forget the elderly parent who unless they lived in medicare housing, would not be able to live on their own.  Hence, my mom lives with me.

I remember coming home from college after being away for four years and thinking, "I can't live with my parents anymore. " It was crazy having to answer to them after being away for four years.

Well, it is just as crazy for parents to live with their children.  They can't answer to their children and their children can't answer to them, but that is exactly what happens as time wears on.  Why is this so hard?

The Sandwich Generation

What exactly does The Sandwich Generation mean?  Well, for one thing you have to be a baby boomer, born after WWII from the late forties through to early 60's.  I qualify for baby boomer status.  Secondly, you have to still have children at home and an elderly parent that lives with you.  Right again, I qualify on that point as well. So, I am sandwiched between my kids and my mother.  Like the ham between slices of bread.  On one end I have three children: 21, 24, 27 and on the other end my mom is 92.  It is more difficult to care for my aged mom than my three overgrown adolescents. To make matters worse my mom has dementia-Alzheimer's.
So I am blogging about this dilemma which is effecting everyone I know in their late 40's to early 60's.  I am writing a book to share with you.