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As we move through another remarkable year of progress and partnership, I want to take a moment to reflect on the heart of our mission: building a community where no one faces dementia alone. At CaringKind, we are Connect2Living, linking individuals and families to compassionate care, life-changing support, and the knowledge that they are not alone on this journey.

I recently moved back in with my parents to help my mom care for my dad. My dad was recently diagnosed with Alzheimer’s disease. Most of my friends are busy with their families. I cannot talk to them about this. How can I cope with all these new changes in my life?

What resonates for me most, as a Support Group Leader, is the interaction between the members of the group. I find it fascinating. They play off each other and it’s like watching a ball bounce around the room. It’s emotional and joyful. And it’s engrossing to watch the group’s involvement with one another.

My wife, Susan, was diagnosed with Alzheimer’s in 2009 and passed away from Alzheimer’s in 2021. When she was first diagnosed, we had no idea about the nature of the illness and how long the journey would be or what it would require of us. I did my best to keep my wife involved in social activities inside and outside the home. In the last few years of her life, she wasn’t able to speak, and we worked hard to ensure that she was comfortable.

Chris: When my mother, Rosie, was 77, she broke her femur. Within a year, I noticed she was different somehow. My entire life, she had never missed my birthday. She would always call me that morning to wish me a happy birthday. But that year, she didn’t. Later that year, she was diagnosed with dementia. My sister and I cared for her; I took one half of the week, and my sister the other.

The CaringKind Alzheimer’s Teen Board is a group of dynamic youth leaders dedicated to raising awareness about Alzheimer’s and dementia and caregiving. The Teen Board advocates for research funding, supports people with the disease and their families, and educates peers and future Gen Z leaders.

“My mom was living alone and she started telling us stories like how she got lost in the neighborhood and had to call a cab to find her way back home. My sisters and I thought that these stories were a little odd, but not alarming. Then she started getting a little paranoid. She said that a thief was coming into the apartment and taking things, like food and jewelry.

“Just over 10 years ago, I noticed that my husband, Ken, was often repeating himself. At the time, I figured it was just a sign of old age. I knew nothing about Alzheimer’s or dementia. When he made a trip to Hong Kong to visit his family, I received a phone call from them. They were concerned that his repetition was a sign of a deeper problem. When he returned, I scheduled an appointment for him. And that’s when he was diagnosed with Alzheimer’s.

My mom was changing in ways I didn’t know how to handle and that frustrated me. She was getting aggressive, calling me repeatedly at work, and calling the police. I had my cousin watching her while I was at work.

I realized that something was wrong when she was in assisted living. She started experiencing sundowning, and her personality changed. As a friend once told me, “Meet your new mother.” And now I just try to offer unconditional love and understanding. The changes she’s gone through are staggering.

I wouldn’t be able to get through this pandemic without CaringKind staff like Adina Segal and Nancy Hendley. I’m a New Yorker who works in the fashion industry — I didn’t know anything about Alzheimer’s caregiving. I was thrown into this with my mom who is 92 years old. I moved in with her because she didn’t want to live alone.

When our precious world is at its darkest, CaringKind is the lighthouse that continues to guide families throughout the Alzheimer’s or dementia caregiving journey. And with New York City being hit harder and earlier by Covid-19, CaringKind had the obligation to shine even more brightly. I believe we honored that obligation. But the work is far from over.

Over the past forty years, while much has changed in the world of Alzheimer’s and dementia care, CaringKind has been steadfast in our mission and our commitment to excellence. We believe that individuals and families facing a diagnosis of Alzheimer’s or a related dementia deserve the highest standard of support. Our fundamental approach is to let each client’s unique situation inform a personal care plan.

As cognition declines, persons with dementia lose the ability to process thoughts, express themselves, understand written and verbal communication, exhibit good judgement, and regulate their emotions. As these changes occur, families face devastating loss.  Eventually, a person with dementia loses the ability to function independently, to plan, to do tasks as simple as making a cup of tea or putting on a sock.

Caring for a relative or friend with dementia requires many strengths and skills. Some are transferable from other parts of our life, but others are new and challenging. Caregivers have a lot to learn, and like any other job, they need an orientation and basic education, followed by in-depth training and practice.

CaringKind supports caregivers by building a foundation of knowledge and emotional support. Our caregivers have access to both the rich resources of CaringKind and the assets of our community partners. Clients express appreciation for the guidance, education, skills and, most of all, for a staff that is never judgmental, always comforting and truly understands dementia caregiving challenges.

Spring is here at last! What a pleasure to feel the sun on my face, to take long walks and to watch the tulips and daffodils bloom. Nature has the power to heal and restore us and no one needs this more than dedicated and hardworking dementia caregivers.

Fast-forward seven years, and Susan is now one of our most loyal and committed support group members. She freely tells the story of her transformation. Susan says that the sense of community and belonging she’s found in her support group has become one of the most important cornerstones of her life. All she needed was to take the first step. Support groups are the foundation of CaringKind’s services.

Something else distinguishes our support groups from many others. These are not “drop in” sessions. Many groups meet weekly – some meet twice a month. We ask our caregivers to make a firm commitment to participate. This is a commitment not just to themselves but to their fellow group members. Every participant understands the “contract” with their other caregivers as well as the rules of the group. Respect for one another is paramount.

Over these past nearly 30 years, I have heard time and time again how important it is for people in our community to have a place to come where they are really understood, and where they can get guidance to help them navigate a very frightening landscape.

In a compelling essay, “With Every Alzheimer’s Diagnosis, the Same Bleak Conversation,” published in The Wall Street Journal in late August, Mr. Abbate laments, “Researchers have made so many breakthroughs in fighting disease over the past century that progress can seem inevitable. Ailments that once were death sentences — diabetes, HIV/AIDS, many forms of cancer — have been transformed into chronic but manageable conditions. But for Alzheimer’s, as the old phrase goes, we got nothing.”

The headaches are killing her. She’s no longer exercising. Her meals most often consist of grabbing a quick bite on the run. Her friends are worried – they see and hear from her with less and less frequency. She’s cancelled her last three appointments with various doctors and a dentist. She doesn’t remember the last time she sat down to read a good book or see a movie. Sleep is ellusive. And when she does finally pass out, she soon wakes up in a cold sweat to write down all of things she’s forgotten to do.

In 1982, 11-year-old Jeremy Abbate’s mom told him not to be surprised if Grandpa didn’t remember his name. She was hopeful, she told her son, that scientists would find a treatment for Alzheimer’s soon. Fast forward 35 years and Mr. Abbate, now Publisher and Vice President of Scientific American magazine, is saying the same things to his kids.

My mother, born before the Great Depression, was an early and avid fan of technology. As far back as I can remember, we were always the first family on the block to have new-fangled gadgets and gizmos like a television set and a telephone answering machine. Ours was the size of a small refrigerator. We had a mobile phone long before flip phones or iPhones were even fathomed and our car air conditioner was a huge success, even though it was so big, it was nearly impossible for passengers to fit in the front seat.

I recently asked a dozen people to say the first thing that popped into their heads when I said “social worker.” Not surprisingly, I got a dozen different answers: collaborative, compassionate, empowering, highly qualified, perceptive; building resilience, helping families, problem solving; advocate, counselor, educator; and coping skills.

Unfortunately, many people take the same uninformed approach to the charities they support. They give money almost blindly based on a TV commercial they like, a vague allegiance to a celebrity spokesperson, and yes, even to a charity’s color. They donate their hard-earned money not really knowing how the charity operates, the range and effectiveness of its programs, the experience and professionalism of its staff, or how it spends the money you give.

This comedy science fiction novel follows the interstellar misadventures of Arthur Dent, the last man on Earth, as he is thrown into a foreign world facing crisis after crisis, all the while trying to make sense of his new reality. While Alzheimer’s is no laughing matter, this new reality is something that family caregivers can certainly relate to.

You’re on your way home from work when your wife calls and asks you to stop at the corner grocery store to pick up some milk. You oblige. The store owner, who’s known you for years, looks puzzled. He confides that your wife has been in the store three times today—for milk.

So, we stepped back and assessed what we did best. And what we do best — where we have always excelled — is understanding the needs of New York City caregivers and providing them with the support they need to care with confidence today and, just as important, to plan for tomorrow.

A decade ago, I would get quizzical looks when the dinner host introduced me as the new President & CEO of the New York City Chapter of the Alzheimer’s Association. Inevitably, I would try to explain that Alzheimer’s was quickly becoming a national healthcare crisis, but the conversation soon turned to golf, vacations, grandkids, and other pleasantries.

Technology has revolutionized the way I live and work. I love this brave new world and welcome it into both my personal and professional life. Innovations like Fitbit, Netflix, and Facebook keep me healthy, entertained, and connected with friends from long ago. And with 24/7 internet availability and advances in telecommunications technology, the New York City Chapter of the Alzheimer’s Association is always at my fingertips.

For too long, too many members of our community have been on the sidelines watching as the number of people with Alzheimer’s has skyrocketed to more than 5 million.

There are many factors that have contributed to this explosion in program utilization at the Chapter. First, Alzheimer’s is no longer in the closet. A steady stream of national media stories about dementia has forced the public to pay attention to
our nation’s third largest killer.

Behind every Alzheimer’s statistic is a life — a family — a community — forever changed by this devastating disease. So let’s take a look at some of the faces behind
the facts and figures.

Similarly, healthcare professionals working in residential settings tell us that providing care for advanced dementia patients is one of their greatest challenges. And, as the population of dementia patients grows, their challenges will grow. But, the goal will remain the same: to establish humane and cost effective procedures that keep a patient comfortable.

We were there to lobby Congress for increased research funding; to ensure that appropriations were made for the National Alzheimer’s Project Act; and to stress the need for education and awareness programs, caregiver resources and early detection.

Her simple act of defiance on December 1, 1955, – refusing to give up her seat on a bus to a white passenger – helped changed the course of American history. Rosa Parks was diagnosed with dementia in 2004. She died in 2005.

The twelve-year-old boy is lying motionless in the middle of the football field. His
coaches, teammates, mom and dad are frightened. He was hit hard. But after a brief but anxious wait, he soon sits up, bounds to his feet and heads for the sidelines.

One striking early memory is seeing clients crammed into our tiny fifth floor lobby – many sitting on the floor. Alzheimer’s was already a crisis for too many families, and
the demand for our services was exploding. As the number of clients on our waiting lists was increasing, this much was clear: we had great new ideas, but we did not have the space or staff to implement them.

We knew then that this storm was something out of the ordinary. Next came the crash, and we ran into the living room to find a glass window panel had been blown out. Trying to contain the damage, with the wind howling and rain pouring into the room, was harrowing. But with the assistance of some duct tape and a sense of humor, we managed to fix the problem and sit out the rest of the storm unscathed.

There came a point, however, when it was necessary for me to take control of her medical care and to move her out of her home – first to assisted living in Florida and then to a New York nursing home. These were hard decisions for me, as they are for many families.

Many “cures” and “causes” touted in popular media, like those above, may not be harmful, but neither are they scientifically tested nor proven. And some suggestions – like “avoid flu shots” — can be downright dangerous. Yet they’ve all somehow become part of the conversation about Alzheimer’s. How do you know what’s good for you, and what’s just junk science?

The truth is, I didn’t know where to turn. What could I do to make my father comfortable? Was he on the right medication? My mom was a classic case of an exhausted caregiver. How could I possibly help her when she was in Florida and I was in New York juggling the demands of my own family and job?

We’d been driving around—lost—for what seemed like an eternity. My husband wouldn’t ask for directions. “Why not?” I pleaded. He replied, “I don’t need help. We’ll be fi ne.” “Typical man,” I thought. I finally pulled out my cell phone; mapped
our destination; and within minutes, we were back on track.