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?