Out of the Blue

Oh, boy. 

It has been a while since I have posted. I've realized that I cannot write when I am 'in the process.' I need time and space to heal, reflect and finally accept. 

Just after my last post in July of 2012, my mother stopped being able to walk and was fitted for a wheelchair.  

I started to recover from that in about November, but then she stopped being able to eat or chew solid food. 

I started to recover from that in February, but then she started sobbing (lucidly) every time she was bathed. 

I stared to recover from that in April, but then she stopped being able to speak. 

I started to recover from that in June, but then she started drooling (and not being able to move the saliva in her mouth). 

I stared to recover from that in July, and then he started having problems swallowing pureed food.

It's heartwrechingly painful. All my cries, all my sobs, do nothing to stop this gutwrenching disease from taking over my mother. She is shrinking like a jawbreaker. Slowly and evenly way all the way, layer by layer down through to her core.

Her disease is relentless. It is like a truck that plows through your house without mercy, breaking, shredding and tearing everything up until there is just a path of destruction in its wake.

I pick up what is left, and dust myself off.

So, what is left?  

Sometimes there is a little smile here and there. Sometimes she will reach for my necklace or bracelet and try to form a word, "Wh" - she will get out. Then she will lose her concentration. I know she is asking "where did you get this?" I tell her who it's from.  

But every time, multiple times (no joke - over 25 times per visit) she will reach out and pull whatever she can get her hands on, my hair, my jacket, my cheek to get my face close enough to hers so she can kiss me. 

And this little gesture means everything. I just kiss her over, and over, and over and over again. I smother myself in the love she has for me, and try to hold onto the moment of bliss.  

I know it won't be long before the truck is back taking that away too. 

PS: She is much, MUCH happier to see me than she appears in this photo! 

Sex Drive ~ Part Two

A few weeks later I pick my mum up at her office for an emergency road test (a test she thinks the doctor had requested). But it was me that scheduled it (and begged the road test people for the safety of all those on the road) after she pulled into three lanes of oncoming traffic and nearly killed us both. An hour prior to this incident, we were meeting at my office for lunch. She had gotten lost and parked on the other side of the city. I called the police and reported her as a missing person. That night I drove to her house stole the keys (and the car) and left a note telling her the doctor didn’t want her driving. She refused to listen. I was outsmarted. In the morning she had taken a taxi to my house and used the spare key. 

After the road test a woman calls from the Motor Vehicle's Office. My mother had failed the test. The official letter would be sent to her in the mail. I am devastated. My mother, the strong, courageous independent woman who ran her own company has lost her license. Our lives are changing at a pace I can’t keep up with. 

I vow to do everything in my power to protect her, and help her maintain her independence for as long as possible. I tell her I will find her a driver and he will drive her everywhere she needs to go. I go to bed early that night with the aid of a sleeping pill the doctor has prescribed. 

I wake up in the morning to a voicemail: 

“Hi darling it’s your mother, don’t worry about your mother, she is going to be fine, and you’re going to find me a driver and he’s going to drive me around and screw me...okay darling, bye-bye."

What? Did she really say that? I replay the message over and over again...yes, she said it. Okay. 

I call her and am careful to explain - that the person I hire to drive her will not be her sexual partner. She tells me she understands and that she will be happy with just a driver. 

The following day there is another message: 

“Hi darling it’s your mother. Have you found me a driver yet? Make sure he can get a hard-on...Okay? I love you, bye-bye”. 

Okay, in all honesty, I’m devastated, but I laugh my head off at the message. I think it is so funny I can’t believe it. This is not my mother, this is hilarious. But a few moments later, I’m heartbroken, this really is - not my mother. This is the point where her decline really begins.

Sex Drive ~ Part One

After exactly 4 years  - I am finally ready to share this story. It represents the kick off to mother's Alzheimer's. Looking back it was an indication of the craziness to come, but at the this time I didn't know it. I will post Sex Drive in four parts. The following is part one.  

June 25, 2008, 830am - My Mom’s Office

Mom: “I put an ad on the Internet for a man...”

Me: “You did??? 

I stop what I am doing and look up at her in shock. 

Me: Well, what did you say in the ad?” 

Mom: “I want to get screwed!” 

WHAT? 

I hear the words coming from my mother's mouth - but I cannot believe what they have said. 

Me: “You do? 

“Whose name did you use in the ad?”

Mom: “My own.” 

I cannot believe it - any of it. My mom has put an ad on the Internet for a man and she has just told me in a whisper, at her office that she wants to get screwed? Worse still, she put her own name in the ad? That’s not even safe to do! My mother has lost her mind, but she seems perfectly capable to tell me about it...

This is not my mother. Not only is she is the most conservative woman on the planet, never drinking, never smoking, she has only had a few sexual partners in her whole life. Where was this coming from? 

Although we had had a very strong relationship, we had never discussed sex. She grew up in the 60‘s and the age of The Cleaver’s; I in the 80‘s in the age of Madonna. She was much too shy to ever talk to me about sex, it wasn't part of her generation, and I never wanted to embarrass her. The day after I got my period I came home from school to a book lying on my bed. “Did you get the book?” That was the extent of our sex talk. 

The doctor had warned me - but I hadn’t believed her. I didn’t believe my mother would ever exhibit these symptoms.  “There is one more thing you need to know, people with this illness often lose their sexual inhibition and because of this they often exhibit sexual behaviors - in public” the doctor went on...”people with this disease have been known to take their clothes off, touch themselves, or someone else, in public.” Oh, thank god - I thought to myself, that’s one thing I don’t have to worry about - this is my mother you’re talking about. I would do something like that (with the right amount of alcohol) -  my mother? ha. She would never-ever do anything like that. Or so I thought. 

To be continued...

What my mother's 'no pants' day taught me

One day this week I dropped in to see my mom around dinner time. I found her eating happily with the other residents in a long yellow gown, bare legs and running shoes.  

What happened mummy, where did your pants go?  

“I don’t want to wear pants” she said.  

You don’t want to wear pants anymore? 

She then looked up at me innocently and said “Do you want to take me back to my room and puts some pants on me?” 

Sure I say. 

When we get back to her room I find a pair of pants on her bed. I try to put these on but she says she doesn’t want them. I realize she thinks her pants are too small - they aren’t - but she thinks they are. I pull out another pair, she accepts. 

Pants now officially on.   

On one level I find the whole situation hilarious, as funny as a two year old refusing to wear clothes. On a deeper level, it bothers me that she is no longer able to communicate in a way others understand. It’s not that she doesn’t want to wear pants, it is that she can’t articulate the reason she doesn’t want to wear those pants. 

My mother deciding not to wear pants, is just another strange incident I will add to my long list of dealing with her Alzheimer's. She has tried to use a hair brush as a toothbrush, she has watered the fake flowers, while the real ones die in her room. She has collected milk bottles from the neighbors' recycling box. It's not easy seeing your mother do things in an improper way. The actions hurt on a deep level, it's your mother, and she is supposed to know better.    

I have not always handled these incidents well. I have freaked out, gotten angry, cried, yelled, even begged for her to stop, or do something a different way.  

Now, 4.5 years into managing her illness, and nearly a year into her being in a wonderful facility, I am more calme. I am able to ask myself, does it matter? Does it matter that she not wearing pants? Had we still been at home, it might have been a problem should she have wanted to go outside. 

But in here - it doesn't matter if she is in a yellow gown, purple gown with pants or without. She is fine, she is safe, she is content. And better yet, the whole “Villa” is accepting. A month ago at a fundraiser, my mom ate a cookie from the bake sale table. When I offered to pay, the woman said, “she’s a resident, she is allowed to eat anything she wants.” They make it easier for me to just let her be. 

I no longer need to push my needs or desires on her. I do not need to correct her behavior for the sake of my feelings, or to protect my own belief of how she "should be - or how she should act." I am learning to let it go and accept her exactly where she is at. I am learning to accept that if she doesn't care about wearing pants, then neither should I. 

No pants it is. 

having a parent with Alzheimer’s is like a giant dose of grow the fuck up

When I was young I thought the true sign of being a grown-up was buying patio furniture. To me, patio furniture was was the ultimate ‘grown-up’ purchase. Patio furniture meant I would have my own home, and it would be furnished with my own things; this was the sign I would be a grown-up. Now, a giant spotlight has shined on the true meaning of being an 'adult' and it reads: “time to grow the fuck up.” 

Until just a few years ago, my life was care free and fancy free. Unlike my mother's which was ridden with tragedy from a young age - her mother died when she was 3, her sister when she was 22, and she used to tell me she witnessed her father die at her sister's funeral - I was living in my own perfect bubble. Often I spent my time gallivanting around the world with a backpack; sometimes working in remote location on a film set; and much of the time I was doing yoga and having cocktails with friends. In essence, life was good. My family was healthy, there were plenty of opportunities and I embraced them.

I was, in fact, living the Baz Luhrmann song: Don’t worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday. The only difference being I was blindsided at 4pm on a Friday.

As a kid blasting open the door, straight to the fridge, then down on the couch in front of the TV, I would see my mom crying over a commerical. Why would she cry over commercial, or on the phone upon hearing bad news about someone else’s life I would wonder. What made her so compassionate, and care so much? Why did she spend so much time helping people, or be willing to drive 6 hours to attend an uncles funeral? Okay, I got it on a human level...but there was so much empathy in my Mom's heart, I really didn't get it.  

Now, I get it. 

Having a mother with Alzheimer’s is exactly what develops ‘life experience’ for a self-proclaimed, self-centered, only child. It’s almost like growing a plant out of a white plank of styrofoam. Life experience furthers when the hearts aches. Now, compassion and empathy are emotions I seem to have too much of. I will never return to the carefree and fancy free life I lived in my prior bubble. Not unless you have been through some kind of tragedy, be it Alzheimer’s, Cancer, or any kind of life struggle, can you fully comprehend the immense gut-wrenching, psyche-bashing and all-consuming nature of the experience. 

And really, if given the choice, I wouldn't want to go back. I am now the person my mother was when she raised me. Even though I didn’t understand it at the time, I admired her compassion and caring nature toward others. 

In that respect, I am lucky to have had Alzheimer’s stuffed down my throat.