We were sitting in a restaurant–me, my mother, and the jerk who eventually became her second husband (he was also the creep who tried to molest me under the guise of fatherly pretense). He went on and on about how much he loved my mother, that my brother and I had nothing to worry about. He promised to always take care of her, and how my brother and I would always be welcome. I seethed–I didn’t need his patronizing attitude or his grabby hands–and I silently vowed then and there that the day would come when I would be able to take care of my mother without his “help”.

In hindsight: be careful what you wish for.

Several years later, my step-father collapsed while on a business trip and died after a month in ICU.  All those promises he made turned out to be lies. He left my mother with a mountain of debt, worthless insurance policies, numerous lawsuits and a herd of squabbling relatives. Already caring for own sick, elderly parents, my mother had to start fresh. As my grandparents deteriorated, my mother promised that it would be different for me.

She swore I wouldn’t have that burden. I’d already been there, done that. No more.

Flash forward to when my youngest daughter was nine months old.  With no other resources, my mother moved in with us on what she assured me would be a temporary, short-term basis.

Twenty-four years, save for a brief spell in Florida that ended badly, Mom has been with us. She used to be thriving and self-sufficient. Now Mom shuttles from one room to the next,  constantly asking me what time it is and when I am going to sit with her for that is my job now, to entertain her.

Some days she doesn’t even know who I am. My long-suffering husband is the guy who makes her lunch.  On some level, she knows she just became a great-grandmother for the second time, but don’t ask her what the baby’s name is. One minute she’s  grumpy and petulant, the next apologetic and sobbing. If she doesn’t  get her way, she throws a tantrum worthy of a two-year-old and threatens to call the police.

She used to love to take walks and putter around the garden. Now just to get her to the doctor is a battle royale.

I have become her nurse, caretaker, her manager, her 24/7 slave. And I hate it.

When Alison asked me to write about what it’s like living with a relative with Alzheimer’s/dementia, I wasn’t sure if she was ready to hear the truth. Which is, as much as I love my Mom, and I do, she drives me crazy. I resent her for being sick. And I’m angry. Angry that she put me in this position of once again having to care for the sick and elderly, just as I did with my grandparents.

In TV and movies, seniors with Alzheimer’s are pleasantly dotty, comic relief characters.

Well, maybe some are–but the painful truth is, many are like my mother, mean, nasty and belligerent. My grandmother was the same–she once accused us of trying to poison her. She refused all medical treatment–as does my Mom.

Now you’re probably wondering–why don’t we put her in a home? Ha! The reality is, we/she can’t afford it. There are no other relatives who can pitch in ( my brother committed suicide, another sad story).  I called Social Services for help and got the old budget-cuts, no-money speech. Just to get a nurse to give us some relief, there’s a year’s waiting list. So we grit our teeth and tough it out on our own.

While Mom had always been difficult, her decline began in earnest after Hurricane Irene two years ago. I don’t know if it was because of the disruption in her routine, the two weeks without heat or electricity. Before then, she would at least be nice, bathe and dress herself. Now she can’t wash her face by herself. She wakes up at 4AM saying she’s “scared.” If she doesn’t know where I am, she has a panic attack. She wanders from room to room and mumbles to herself

But recently, when I had to be away from the house for a couple of days, lo and behold, Mom was fine! No whining, perfectly capable of dressing herself.  At least that was one worry off my back. Had we turned a corner? No. The minute I returned home, the pleading and crying jags  returned.

Yes, she’s my mother–but as a child growing up, she wasn’t very motherly to me. She dumped us on my grandparents while she led the single life in Manhattan. She would come home on the weekends, like a big sister. She made no secret of the fact that my brother was the golden child. I was second best in every respect.

At dinner, my brother would scrutinize my plate and if he felt my portion was bigger, he would harass me until I switched plates,  not once, but several times. It was humiliating, but his behavior was laughed off.  I soon learned to live with the fact that I was second best and would always be so. I still cringe and feel the shame and embarrassment when my mother told a family friend, who had asked me a question, not to bother with me because my brother was the “intelligent” one.

It’s ironic that my brother, whom she held in such high esteem, kicked her to the curb later.  And who took her back but me, which I count as one of the worst mistakes of my life.

So how do I deal with my Mom? I try not to let her get under my skin. Some days are better than others. Some days I just want to run away. And other days, there are flashes of the pleasant person she used to be.  Soon, I know, her condition will come to the point where we will have to make some hard decisions.  But for now, it is what it is.  I’m not a saint. I’m just a human being with my own issues. I wish in one of those pills she takes that there was a magic cure.

Just to be clear–aside from her brain being oatmeal, Mom is strong and healthy. She eats cookies, cakes, ice cream all day long and doesn’t gain an ounce. Her mind’s functionality is not in synch with the rest of her body. Worse are the times when she is aware of exactly how she is.

I understand all too well how some patients will outlive their caregivers–I know the stress I’m dealing with. There are times I’m ready to pop. But there are millions of families out there in the same boat–not that it makes it any easier. If it were not for me, I honestly don’t know where my mother would be. My grandmother used to say it, and it’s true–you cannot be sick, poor and elderly in this country.

She was right then and it still rings true today. There is no safety net for our sick seniors–not to mention their stressed-out families. And this is only scratching the surface of what I go through on a daily basis–some stuff, trust me, you don’t want to know.  So I trudge on. What else can I do? I am the “dutiful daughter”. Put that on my headstone in neon lights.

A question, however, looms unanswered—as a society, we freely spend money on research trying to isolate the genes that cause the disease, on the mechanics of the disease, not to mention a possible vaccine or cure. All good and needed.

Still, why can’t we spend some of that money on the care of the victims? And by victims I do not merely mean the one afflicted with the disease but also the ones heroic enough to care for those individuals—because it seems that as a whole society has tossed all of us into the trash bin.

But if society could provide a truthful dialog about the disease and the funds for the actual care of the disease, then THAT would be an instance of not only integrity but also humanity. I guess that’s too much to ask.

In the meantime,  I have to go take care of Mom. This is the witching hour, when she’s not quite sure where she is. Some nights she thinks she’s in a home and I am her nurse–other times she’s living in the past and thinks I’m her mother. I’ll bring her upstairs, put her to bed, give her a pill, if I’m lucky she won’t wish to die while she sleeps–but come morning, she won’t remember any of it. Maybe she’s the lucky one.

PJ McIlvaine is a produced screenwriter and a published journalist/author. Her original Showtime family film MY HORRIBLE YEAR was nominated for a Daytime Emmy. Her indie holiday movie went straight to DVD (no loss there). More recently, she completed a paid co-writing assignment on a biopic about the tumultuous relationship of the brutal “Don” Vito Genovese and his tempestuous wife Anna.   PJ is always working on something and is a fountain of ideas, most of them lousy. PJ makes a mean batch of pecan brownies and chocolate chip cookies that are better than sex.  PJ’s e-mail address is pjmac56@yahoo.com. 


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