Showing posts with label living with Alzheimer's. Show all posts
Showing posts with label living with Alzheimer's. Show all posts

Friday, September 16, 2016

I"m quitting my imaginary job


This will come as a blow to those of you eager for my existential stability, but I’m bailing on the only real job I’ve ever had in 24 years.

It may help soften that blow to know it was all make believe.

Yes, I’m quitting the imaginary job I’ve held at the imaginary hardware store where I’ve been pretending to work since February.

It’s just driving me nuts. More specifically my Mom asking me about it is driving me nuts.

She has dementia. It seems to be getting worse in the last month since we took the necessary step of moving her from Pittsburgh to Latrobe. She’s now in a marvelous independent living place, but we see her every day, usually when we bring her home for lunch or dinner or just hours sitting on our porch overlooking the woods.

I know so many children of aging parents who have it far worse.

The thing with dementia is you don’t know how it’s going to play out. She’ll be 84 in December. Her father lived to be 97.

I do the math and, man, I hate doing the math.

Took her to the doctor last month. He pronounced her in excellent health.

Hallelujah.

All my petty complaints lead to momentous bouts of self-loathing because I know I should be celebrating her. But her memory is shot and I fear a future where a good son is supposed to answer the exact same question honestly about 20,000 times.

One example: It takes eight minutes to drive her home. She once during those eight minutes four times asked me the exact same question the exact same way.

“If you had your life to live over again, what would you do differently?”

The reason that one gets to me is because I’m always asking myself the very same question at about precisely the same intervals — and I’m supposed to be the rational one!

It’s just not the kind of philosophical nugget about which to banter while waiting for the traffic light at Sheetz to change.

So a while back I started giving into fantasy answers.

“I would have pursued my dream of driving an ice cream truck.”

“I’d have become a rabbi.”

“I’d have told Val about how much I enjoy wearing her frilly summer dresses when she’s not around.”

Does this make me a bad person? She didn’t remember one lie from another and it keeps me from dying of exasperation.

What’s odd is the only one she remembers is the one I told her about working in the hardware store. She responded so positively to the lie I thought, yeah, what the hell, I’m taking a pretend job there.

I began making up richly detailed stories about the regular hours, the co-worker camaraderie, and how the price of lumber was playing havoc with the profit margins.

I was really enjoying it. It felt great to be part of a team. The lie became a big part of our time together, and I knew she was telling all her friends about my new career. And, boy, you should see the wistful look on Val’s face whenever she brings it up.

And she brought it up all the time.

It became a real grind, albeit in an imaginary way. I started bitching about the hours, the tyrannical boss and how tired I was of coming up with a new acceptance speech for the seven consecutive employee of the month awards I’d earned.

So last week I told Mom I’m quitting and never going back.

I suppose it’s natural to self-demonize when you behave less than saintly towards the woman who gave birth to you. In the eyes of many, I’m something of a model son.  

But it’s difficult treading the thin line between her elusive sanities and my very own.

For the sake of our children, I try and do it with playful and, I think, harmless humor.

Still, she seemed so disappointed that I quit something that seemed so stable and promising, I had to lie about my prospects.

Now she thinks I’ll soon be driving a kosher ice cream truck!

I only hope Val doesn’t mind I’m planning on pulling together my uniform from clothes on her side of the closet.



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Thursday, June 2, 2016

Demented Mom's sweetness making me crazy




Being the primary care giver for an elderly dementia patient is like walking on a windy day with a beloved balloon at the end of a long string.

It’s there, but it’s not.

You feel like you’re being responsible by holding onto the string, but if a gust carries the balloon off to heaven, do you really care?

We just had Mom, 83, spend two nights with us over the weekend and it was wonderful. She and the girls shared so many laughs. It was so wonderful, in fact, we’re talking about the logistical possibilities of having her move in. 

I wonder if I can take it for reasons that may surprise you.

See, Mom’s so sweet it makes me crazy.

With frequent tending, she’s still fine living alone in her South Hills condo where she’s happiest.

And she’s very happy. Really happy.

I mention her dementia in my “Crayons!” presentations and someone always comes up afterwards to share their experience. Happened again two weeks ago.

“Does she have the nice dementia or the mean one?”

Oh, I said, it’s the nice one. She makes Fred Rogers seem like a sourpuss.

“You’re lucky. My grandmother had the mean one and we all wanted to kill her.”

Yes, I’m very lucky. First of all, because she is my Mom. I credit her with bestowing me with my humor and sense of wonder about life. I have no residual taint from poor parenting. I believe I’m well-adjusted and that’s mostly thanks to her.

Sure, I’m always broke, but I can blame my fun-loving Dad for that so it’s cool.

But Mom was a marvel. People her whole life have always loved her. Still do.
I think it’s because she had was genuinely funny all the time and wickedly sarcastic some of the time.

Now, the wit is gone and all that remains is the kind of sweetness so overpowering I suspect it could cause cancer in lab rats. 

Being with her for an hour is like watching a “Little House on the Prairie” marathon speeded up.

She says without any seasonal context that she believes in Santa. Then she’ll say it again. Her memory is shot and the only thing she remembers is to reflexively announce every 10 minutes how beautiful everything is.

So, clearly, creeping dementia’s not only killing her, it’s killing me. Because it’s looking increasingly like the only thing she’s bequeathing to me is her sarcasm.

Being around her for more than an hour unleashes my inner smart ass.

It’s how in July I’ll be taking the family to Minneapolis to see me accept a national award for Acme Lumber Salesman of the Year.

See, I got tired of explaining to her I’m a writer. It’s too complicated for her simple mind.

So I told her some months ago I took a job at the local hardware store. It’s respectable, easy to grasp, something concrete — and we sell concrete on aisle 6.

I’d tell Val the same thing for the same reason, but I’d hate to see her cry when I had to admit it’s all pretend.

Mom likes the idea of me working at the hardware store. She’s always asking me about it.

And it wouldn’t do for a glory hound like me to be just a regular shmoe. No, I have to be the best (I’ve been employee of the month for six straight months).

That’s why I told her about the big award. I thought it’d be fun brag about national recognition.

It is.

She’s really proud of me. 

Of course, stories like that are mostly benign.

It’s the story of the angry barber that upsets Lucy.

She’ll be 10 in two weeks — and I love telling her it’ll now take her twice as long to write her age down.

She adores Nana and hates it when I’m sarcastic.

She doesn’t want me to talk about the angry barber anymore. He’ll go down in family Christmas lore.

It was lunchtime on Christmas Day. Mom was here. The joyful morning festivities had concluded. I’d showered and was helping set the table.

Mom said, “Oh, your hair looks so nice,” (I told you she’s demented). “Did you just get it cut?”

I rolled my eyes and said, “Yes, Mom, I went and got a haircut on Christmas morning.”

“Your barber’s open today?”

I told her he hates his family and can’t stand being around them even on Christmas Day.

It would have been forgotten had I not mentioned at a wholly inappropriate manner — right during the Christmas dinner prayer. 

Heads all bowed, I said, “Thank you, dear Lord, for the feast we’re about to enjoy. Bless those who are here at this table, bless our loved ones who are scattered around the country or with you in heaven. And, please, Lord, bring peace to this sorry world so that next year my angry barber will be able to enjoy Christmas at home instead of at his barber shop.”

Josie snorted hysterically. She thinks it was one of the funniest things I’ve ever said. She thinks this because it’s both sarcastic and sacrilegious — a Christmas prayer two-fer!

I still bring it up because it makes her laugh. But I can’t do it around Lucy because it makes her mad.

“You shouldn’t be so mean to Nana,” she says.

She’s right.

I may not be a nice person, but I’m proud to be raising one.

I hope she’s one day as patient with me as she wishes I were with her beloved grandmother.

Because besides her mind, she’s otherwise robust. I wonder if she’ll live to 97, as did her father.

That means I’ll be 67 when my days of caring for Mom conclude.

I fear one day her creeping dementia will turn cruel. That the woman I so love and admire for so much will become an unrecognizable ogre that’ll leave a durable scar on a memory that even now is so precious.

My fear isn’t that if I let go of the string the balloon will float away.

My fear is it won’t.


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Sunday, May 8, 2016

A son's Mother's Day lament (from '13)

The woman sounded alarmed. She called to tell me she thinks Mom, 80, is really slipping.

“She asked me to take her to the dentist the other day,” she said. “I told her to meet me in the lobby. When I got there she smiled and said, ‘Do I know you?’ She wasn’t joking.”

That Mom’s asking people I don’t know to ferry her to the dentist alarms me.

The woman’s one of Mom’s neighbors in the condo where she’s lived the past 12 years. My second cousin’s been living there with her the past two years, but the busy girl has a boyfriend and Mom doesn’t see her much.

I sensed the kind woman wants me to move Mom out of there into someplace where she could get more care.

Mom dreads the thought. She’s comfortable where she is.

Me, I’m like a third string quarterback with a fourth quarter lead. I’m just trying to run out the clock and not make any stupid mistakes to infuriate the fans.

I didn’t tell the woman that financial considerations are in play. We are in no position to add any level of elevated care for her.

I didn’t tell her caring for her has led to a profound estrangement from my absent older brother, someone I used to lean on for advice and support. We haven’t spoken for two years and any thaw seems unlikely. It’s something I should have seen coming, I guess. 

Fifty years is a long time for a conservative to love anything.

I didn’t tell her I know I should feel more ashamed that I think it would solve a lot of problems if Mom just dropped dead of a massive heart attack. 

I didn’t tell her any of those things. Instead, I just thanked her for her call and concern.

“Sure,” she said. “I really love Rachel. I just thought I should tell you about your mother.”

Tell me about my mother?

Let me tell you about my mother.

I always think of her whenever I see Carol Burnett.

It’s too bad they never met. They would have been great friends. They had the same preposterous sense of humor. It enriches the lives of all who know her.

I’ll never forget the day Mom did a sit-up.

One.

I was probably about 15 or 16. It was the summer that she for some reason decided to take up the fitness kick.

She lay down on the floor and asked me to secure her feet. She put her arms behind her head and raised up to her knees.

Then on the reverse as she was trying to strengthen some muscles in her body, other key ones loosened. Her body became a bellows.

There, about a foot from my face, she blasted out the kind of fart that would have earned cheers in a fraternity house.

I don’t know how your mother would react, but here’s how mine did: she howled with laughter. It may not have resulted in the desired weight loss, but right there she laughed her ass off.

I did, too.

It was one of the funniest things I’ve ever seen.

She grew up in Punxsutawney, Pennsylvania. Yes, she and Groundhog Phil spring from the same ground. But unlike Phil, she’s never seen a shadow.

She’s one of the most sunny people I’ve ever known. 

A friend of mine told me it was his experience that a person with dementia becomes the opposite of what they were prior to onset. He said his once-darling mother became a mean old bitch before she died.

I don’t see that happening, and it will surely kill me if it does. If anything, she’s become even more childishly cheerful as her mental capacity is decreasing. Next to her, the late Fred Rogers was a cranky sourpuss.

Today’s not the day to write a eulogy for a woman who, if she lives as long as her 97-year-old father did, will endure until, gulp, 2030.

So today I will simply wish you and your loved ones a Happy Mother’s Day and share with you a lesson I learned at the feet of my dear, sweet mother:

Remember to try and always laugh your ass off even during the times when the situation really stinks.


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Tuesday, May 3, 2011

Mom's sad decline


I was more shocked than ashamed when the casual thought floated across my mind that I could solve a lot of our mutual problems by just pressing the accelerator and running Mom over.
Thirty seconds previous she shot me a vicious look and snarled that I was a cruel and indifferent son. She said I’d tossed a bag of sacred family treasures into the trash and just couldn’t wait for her to die.
She was only half right.
And, get this, I’m the good son. I’m the one stationed at the apartment where she’s lived alone since Dad died in 2004. I’m the one who takes her grocery shopping and to get her hair cut.
I’m the one who never loses his patience with her.
“Yes, Mom.”
“That’s right, Mom.”
“It’ll be okay, Mom.”
Two weeks after she no longer has the cognitive power to recognize it, I’ve finally become the properly mannered son she’d worked so hard to raise.
We’d spent the entire afternoon culling through stacks and stacks of papers. There were form tax letters from 1998, stacks of long expired coupons, and print outs of old e-mail jokes with punchlines involving Monica Lewinsky.
It was trash, all right.
I’ve written previously about my 78-year-old mother’s deteriorating mind. As recent as October, I accompanied her to the doctor for tests to determine if her forgetfulness was a charming aspect of her personality, as it had always been, or an indicator of something more serious.
She passed all the tests (she on her own took the same test with two other doctors) and scored no worse than 27 out of 30.
Then two weeks ago, it was like someone threw a switch. Over-night, she became obsessive/compulsive about salt shakers, paper clips, refrigerator inventory and, with an evil assist from the corporation I now loath, doing business with Verizon.
As with many seniors (and even much younger sentients) the promises and allures of our nation’s cable company advertisements can be confusing.
Verizon does them all one better. They dispatched a salesmen into the building where many old people live and had him knock on doors. It was three weeks ago when my mother’s sunny persona was still dominated by kindness and an eagerness to oblige.
He persuaded her to sign a long-term contract. Satan’s contracts for the souls of old bluesmen are less binding.
It took my brother considerable trouble to get out of it. Still, Verizon wasn’t finished. They followed up with service calls and persuaded her to set up another appointment.
They call weekly to gain access to her apartment. I tried to cancel and was asked for her confirmation number.
I explained she’s elderly, dysfunctional, and her apartment is littered with illegible notes on a thousand scraps of paper. 
“I’m sorry, we can’t cancel without the confirmation number.”
As she held steadfast to that policy and refused my request to speak to a supervisor, a red veil descended before my eyes. My voice dropped to an icy hiss.
“Do you have elderly parents?”
“Yes, I do.”
“Then you should understand the situation I’m dealing with here.”
She hung up on me.
Let me make this clear: I do not wish to kill anyone or encourage the killing of the Verizon administrators who target confused and elderly people for profit.
But if I was walking down the street and saw someone killing one of those people, I would stop to watch.
I’m not even a month into this. I miss putting my kids to bed. My income, a trickle at best, has ceased.
My grandfather, who my mother is beginning to resemble in appearance and explosive temperament, lived to be 97.
My mother is 78.
Selfishly, seeing my mother turn so bad, so quickly, is like hearing a corrupt judge in a Turkish court sentence me to prison for drug charges of which I am innocent.
I wonder what is going to happen to my life over the next month, the next year, the next five years.
As you may have guessed, I’m firmly in the pull-the-plug camp, as is my mother, who keeps stressing to me reminders that she wants her body donated to science.

My need to ensure power-of-attorney privileges and living will specifications keeps getting bumped down the agenda as I run from doctor to doctor seeking to ease her frazzled condition. I keep recalling reruns of Terri Schiavo and imagine a day when I’m besieged by yapping strangers praying for a motherly miracle.
I think of all this and know someday I’ll feel guilt about the day I thought, man, I could end her suffering and mine by just gunning the accelerator and putting the dear old girl down.
I know I’ll pay for all my iniquities.
I already am.
Not killing her is killing me.