When It’s Time To Face The Facts About Alzheimer’s And Where To Turn

Amy Aquino first encountered dementia when she was a kid. “I had 11 aunts and uncles on my father’s side, and about half of them had Alzheimer’s or another form of dementia, so it became part of my life early on,” said the TV, screen and stage actress.

Amy’s Aunt Rose, who taught her how to garden, was “smart, curious, interested and active, like all dad’s siblings,” but started acting a little strangely when she was in her late 50s.  Her odd behavior continued for about five years, when the family began to see big changes. “She lived alone, and we’d get calls from one of her daughters that she was missing. My father would jump in the car to look for her,” Amy remembers vividly.

Aunt Rose was too young to be considered “senile,” the term that was used back in the 70s when our grandparents would become forgetful. “Everyone was completely bewildered and struggling to find out what was going on. Aunt Rose was perfectly healthy, perfectly smart, and never suffered mental illness. But, she was acting like a mentally ill person,” Amy says. Rose’s behavior, however,  didn’t have a name at the time, and her family tried everything to help her, from changing her diet to hiring a caregiver. “They were afraid she was going to get hurt,” Amy explains. “It was difficult to comprehend and accept. It was very, very painful.  Watching Aunt Rose lose her life was shocking and difficult to accept.”

Later on, Amy’s uncle Mike developed memory and cognitive issues in his early 70s, but by then his condition had a name: Alzheimer’s Disease.  “Uncle Mike was a physically healthy man who had traveled all over the world. His brain simply stopped functioning the way it should. He could no longer perform daily tasks. He didn’t recognize people,” Amy says.

When Aunt Florence, a third sibling of Amy’s dad, developed Alzheimer’s in her 80s, she never accepted that her brain wasn’t functioning properly, and she fought it. “It became extremely painful for my cousin Katherine, who was Florence’s caregiver,” Amy recalls.  Eventually, Florence had to “be tricked” into being moved to a facility that could properly care for her.

After witnessing Alzheimer’s rob the identities from her loved ones, Amy partnered with the Alzheimer’s Association, during Alzheimer’s and Brain Awareness Month, to help advance the national conversation about this horrific disease and give patients and caregivers tools for them to better deal with it.

“A stigma still is associated with Alzheimer’s, so although it’s a big challenge to put it out there and start talking about the disease and it’s signs, it’s also one of the biggest contributions the Alzheimer’s Association can make,” Amy explains. “As long as it’s stigmatized, you don’t want to say it’s happening to you, as you would with other physical illnesses. But, it’s important to recognize it is, and to make plans. After Glen Campbell was diagnosed with the disease, for example, he told us he wanted to cut his last album because he knew he wasn’t going to be able to do it forever.
“Every time my sister and I forget something, we say: ‘Is this the beginning?’ It’s terrifying because you don’t want to be helpless and a terrible burden to those around you. Your caregivers are devastated because they lose you, and yet you’re there.  They have to worry about you all the time.”

But unlike decades ago, we now have the Alzheimer’s Association to give us directions.  It’s funding and promoting the research that gives us the paths to help stave off the disease as long as possible, Amy reports. Everything is on its website, including 10 Ways to Love Your Brain, “Your brain acuity can be improved with certain activities, like exercising to get your blood flowing; making sure you stay social, so you don’t isolate yourself; pushing your mind to do something it hasn’t done, such as learning a new language. My husband got his pilot’s license, for example,” Amy adds. “Keeping your body healthy will decrease your risk of cognitive decline.”

Learn as much as you can,  the actress advises. “Call the Alzheimer’s Association 24-hour helpline –1.800.272.3900. Start having the conversation there. It can be your partner and give you direction.  Make sure you’re doing everything you can, because once it hits, there’s nothing you can do.”

Rather than guess or worry that you or a loved one has the disease, contact the Alzheimer’s Association and check these 10 Early Warning Signs and Symptoms of Alzheimer’s.  The association tries to distinguish between typical and atypical age-related changes, such as “sometimes” forgetting names or appointments, versus consistently having to rely on aids or others to remember them. Early detection and diagnosis can be beneficial because they allow you and your loved ones to plan ahead and include the Alzheimer’s patient in the process, which also takes the stress off the caregiver.

And, by all means see a doctor if you believe your concerns are real.  “Start to have a gentle, honest conversation about the signs you’re seeing,” Amy says. “You’ll want to rule out things like a brain tumor or other life threatening issue.” The person you suspect of having Alzheimer’s might instead have something as simple as hearing problems. “If you don’t accept that your hearing is going, you will become isolated and stop being engaged,” Amy adds. “That hurts your cognition.”

It’s also crucial for the caregiver to “accept for herself that the Alzheimer’s patient has a different reality,” Amy emphasizes.

“When you don’t accept this basic fact, it can make you crazy, which is transmitted to the person receiving the care,” she wisely explains.”The worst thing you can say to someone you suspect has Alzheimer’s is, ‘Come on, you remember i just told you that. We just talked about this.’  You should try to be in their world and make them comfortable. You never want to make them feel bad about what they’re doing because they can’t help it,” Amy says.”If you make them feel good, they’re more likely to function a little better.

“Just change the subject if you feel you’re going around and around in circles with someone. It won’t matter to the person.  As long as she’s safe and seems happy, that’s what counts.”

My Daughter-In-Law Said “You’ll Go To Heaven For This”

When someone is struggling to accomplish something that’s important to him or her, but doesn’t have all the resources to get there, I’ve sometimes stepped in to help. Here are two examples:

EXAMPLE #1: Rouddy owns a taxi in Turks & Caicos, an island in the Caribbean where I’ve vacationed a number of times. David and I became friendly with him on one trip many years ago, when he transported us from place to place.  On the way to the airport at the end of the vacation, Rouddy’s  van was intensely hot because the air conditioner was on the fritz. He explained that he was negotiating  to get a new van but didn’t have the entire down payment. When I asked him how much he needed, he said $1,500.  I wrote him a check, explaining it was a gift, not a loan!

On our next few visits to T&C, Rouddy chauffeured us, gratis, in his cool new van (literally and figuratively).  We also met his wife and little son.  I haven’t been to the island in years, but Rouddy makes sure to stay in touch, wishing us happy holidays, and asking how David and I are doing.

EXAMPLE #2: When Laura was released from prison after 16 years, around 2004,  I interviewed her for a magazine article about her transition into society,  and took an immediate liking to her.  We developed a friendship, and I subsequently bought Laura a new wardrobe, helped her get a rent-subsidized apartment, and guided her as she searched for a job.  After you’ve spent almost two decades in prison, it’s a struggle to be accepted by, and live in, the “outside world.”

Laura and I also have been in touch over the years. I was invited to the ceremony when she married her long-time boyfriend about two years ago, and I’ve recently helped her launch her own cleaning service.  She continues to work hard to make something of herself, although it hasn’t been a cake walk.

I am not rich, but I’ve worked hard all my adult life and earned a decent living, and I’ve  never laid awake at night wishing I had a mansion,  a swimming pool, gigantic diamonds or handbags named after Grace Kelly.  Although I do wish I could have bought Rouddy  the van outright, I’m lucky I’ve been able to help people like him and Laura, even modestly.

But doing kind things for others doesn’t always require cold hard cash. (more…)

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Recovering And Rediscovering After Loss

When Janis Clark Johnston was 52, her husband “dropped dead of a sudden heart attack” while he was mowing their front yard. He was 54. Their son had recently graduated college and their daughter had left for her freshman year of college.

“It was shattering,” remembers Janis, now 70, who earned a doctorate in Counseling Psychology from Boston University, and has spent her entire career as a therapist for children, adolescents, and adults, in schools, mental health centers, businesses, and in her own practice. Her first book, It Takes a Child to Raise a Parent: Stories of Evolving Child and Parent Development, was published in 2013.

Janis’s new book, Midlife Maze, A Map to Recovery and Rediscovery After Loss, explores the “geography of loss in midlife, the way it can affect us, and what we can do to get back on track or redirect ourselves.” (more…)

Thoroughly Modern Marge

The moment Marge walked into the birthday celebration for my former husband, Douglas, she got my attention.

Petite and slender, she wore red slacks that perfectly matched her bright lipstick, which looked smart with her lacy-sleeved white shirt, triple-strand pearl choker, pearl earrings, and nicely coiffed short, silvery gray hair. It’s easy to tell that Marge is meticulous about the way she looks.


Men Don’t Make Merry Widowers

If my mom had predeceased my dad, one of my sisters or I would have asked him to move in with us. He wouldn’t have coped well with being alone.  Emotionally or physically. I never even saw him boil water to make instant coffee, no less hold a broom or turn on the washing machine. He did use an electric knife in the 1970s, to slice roast beef, but the cord repeatedly fell out of the thing so it took longer to carve the beef than if he had used a regular knife. But that’s another story!


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The Essence Of Motherhood In 9 Words

“You’re only as happy as your least happy child!”

I’ve heard countless mothers quote this statement over the years, and although it’s nearly impossible to determine who came up with it, I think it’s one of the most insightful statements about motherhood ever uttered.

Madeline (not her real name), for example, was recently filling me in on her grown daughter and son.


Kids Do Say The Darndest Things

A man named Art Linkletter hosted a popular afternoon TV show from 1945 to 1969, House Party, and on it was a segment called Kids Say The Darndest Things. A few kids sitting at attention on the stage (as kids in the 5Os were trained to do) would field Art’s questions about everything from their parents to politics, and they’d invariably make funny, clever and insightful comments. Kids have unnerving observational skills, and, without filters, they don’t hesitate to speak their minds and unleash their creativity. (more…)

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Why Mother-Daughter Relationships Change

As a high school freshman, I’d sneak out of the house to make out with my 11th grade boyfriend in Manhattan’s Central Park. Now, as a recent college graduate, my boyfriend (a different guy) is a frequent topic of discussion and a regular visitor. I let my mom know when I’m planning to spend the night at his apartment, and find myself confiding in her more than I do in my friends, something my high school self never would have imagined. 

What’s changed in these last eight years to make stealthy getaways and off-limit topics things of the past?

I went straight to the source, my mom, to find out. “I now consider our times together as shared experiences vs. teachable moments, when I could give you perspective and values,” she told me. “At this point, I think you’ve demonstrated that you know them, so I don’t need to sit around ‘teaching’ you now, which is kind of liberating for me. You also have become my go-to person for advice on everything from sample sale shopping to book recommendations and the college application process for your younger brothers.”

Like me, mom revealed she’s been giving our relationship a great deal of thought.

Her friends have told her they’re committed to cultivating ‘best friend’ relationships with their daughters, but, previously, that didn’t feel quite right to her. I decided to find out for myself if other mothers had indeed made the transition from policewoman to pal. (more…)

Do You Know A Great Guy For Her Successful, Single Daughter?

“Do you still help set people up on your website?” asked the woman who called me one fine afternoon recently as I was driving to an appointment. She was referring to the FabOverFifty section we launched in 2010, called Date My Single Kid, created to help members of our community set up their single “kids.” (more…)

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Do You Believe You Should Have The Right To Die?

When my former father-in-law was bedridden with congestive heart failure, at 96, he asked his son (my ex) to help him end his life. Douglas contacted the Hemlock Society, a national right-to-die organization founded in 1980, to get  a blueprint on how to carry out his father’s wishes. Douglas then asked if I’d be there while he did the deed. I said “yes,” despite the fact that it made me terrifically apprehensive (as it did him.)

Douglas’ father, unbeknownst to me and Douglas, told his nurse about the plan; thankfully, the nurse wrote an email to his boss about it and copied Douglas. I say thankfully because if we had actually gone ahead with the plan, and then someone reported what we had done, we would have been charged with homicide.  

I would not be a model prisoner, nor would Douglas. (more…)

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