Run Across Illinois for Alzheimer’s
Run Across Illinois is a 158 mile relay run that starts at the Mississippi River and ends at the Indiana border. This year more than 25 runners covered the state wide relay over a 28 hour time period on September 17 and 18. With the help of numerous supporters we raised more than $19,000 for the Alzheimer’s Association this year. Our two-year grand total is over $38,000 to date. Watch the Run Across Illinois team in action!
Family caregivers spend a large amount of their income on care costs
A large portion of a caregiver’s salary goes to the health needs of their family members, a new study shows. According to the AARP Research report, family caregivers spend 20 percent of their income on out-of-pocket costs related to caregiving. The Alzheimer’s Association also reported earlier this year that Alzheimer’s disease and other forms of dementia hit caregivers’ pocketbooks especially hard.
Volunteer Spotlight – Anne McEnroe
I volunteer for the Alzheimer’s Association as a tribute to my mom. She was diagnosed with Alzheimer’s in 1993 just before her 68th birthday and lived with the disease for six years. It was a difficult road for me and my family watching the disease progress and seeing her change so drastically right before our eyes. Having lived through my mom’s illness and oftentimes feeling helpless, I wanted to contribute in some way
Anne McEnroe lives in the Lincoln Park neighborhood of Chicago and really enjoys being close to the lake, the park and the zoo. Originally from New Jersey, she moved to the Chicago area when she was nine and considers herself a Chicago native. There are two “Jersey things” she has carried with her through the years – a great love for the New York Yankees and an equally great love for the Jersey shore. A retired chief financial officer, Anne spends her time running, doing yoga, volunteering and traveling. She says, “My fabulous husband Pat and I love taking long walks along the lake front and exploring city neighborhoods. We love Chicago and try to take advantage of all the wonderful things it has to offer.” They have 14 nieces and nephews and almost as many great-nieces and nephews.
What led to your involvement with the Alzheimer’s Association?
I lost my mom to Alzheimer’s. She was diagnosed in 1993 just before her 68th birthday and she lived with the disease for six years. It was a difficult road for me and my family, watching the disease progress and seeing her change so drastically right before our eyes. Unfortunately, I know first-hand what it is like to see someone live with Alzheimer’s. Although my mom ultimately did not speak, I think that she always knew me on some level…or at least knew that I was someone who loved her and was there to take care of her. After I retired, I knew that I wanted to devote more of my personal time to doing volunteer work. The Alzheimer’s Association was an organization that I sought out immediately. Having lived through my mom’s illness and oftentimes feeling helpless, I wanted to contribute in some way. Although monetary donations are extremely important, I wanted to take it a step further by devoting my time to specific projects that were important to the organization.
What kind of volunteer work do you do for the Association?
I started volunteering for the Alzheimer’s Association in November 2015, so I have not been at it too long! Since that time, I have been verifying (or sometimes gathering) information relative to the 24/7 Helpline community database. This project finished up at the end of June which means we have been at it for about eight months because the database houses so many resources. When my mom was diagnosed with Alzheimer’s in the ‘90s, finding help was nearly impossible. There just were not as many resources around then as there are today. I really enjoy the verification process because with each phone call or fax, I am grateful that there is one more resource out there that can help someone. The vast database continues to amaze me, and I feel proud to be a tiny part of something that can assist so many in need. This month, I will be starting a new project assisting care consultants by entering intake information.
Why do you choose to volunteer with the Alzheimer’s Association?
Volunteering with the Alzheimer’s Association is my own small way of making a contribution and giving back. The Alzheimer’s Association provides so much assistance to so many; my volunteer work is how I support the Association and its many wonderful initiatives. My belief is that the Alzheimer’s Association will be at the forefront of finding a cure for this debilitating disease. In the meantime, I hope my volunteer work helps those affected and their loved ones deal with Alzheimer’s. Also, I volunteer as a tribute to my mom, whom I miss every day.
Why do you think others should volunteer with the Alzheimer’s Association?
The Alzheimer’s Association is a great organization to volunteer for. The volunteer program is extremely organized and all of the people that I have worked with have been extremely kind, helpful and appreciative. Even the people I haven’t worked with, but pass by in the hallway or see in the lunch room say, “Thank you for volunteering!” I find this work very rewarding. Although I’m not saving lives, I do feel that I am making a difference, even if it’s just one phone call at a time. The Alzheimer’s Association does a great job of utilizing volunteers and has a variety of jobs and projects for volunteers to assist with.
Read more volunteer stories or view various ways you can become involved. The work of volunteers is critical to achieving our vision of a world without Alzheimer’s disease.
News anchor tries to find joy in father’s Alzheimer’s disease
Richard Lui, a news anchor for NBC and MSNBC, is a long-distance caregiver for his father, who’s living with Alzheimer’s. Every week, Lui travels from New York to San Francisco to be with his family. He says he tries to find joy during his trips home: “Through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.”
e sat down to talk with Richard Lui, news anchor for NBC and MSNBC and long-distance caregiver for his father, who is living with Alzheimer’s. Every week, Richard travels coast-to-coast to be with his family.
Tell us about your father Steven’s Alzheimer’s diagnosis and how it came about.
It began with a diagnosis of dementia. The interesting part is my Dad never had a great memory – it was something we joked about. However, what started to happen was much more extreme.
Dad is one of 13 children in his family, and at Christmas, his youngest sister Fannie pulled me aside and said, “I’m concerned, Steve is forgetting our names.” He agreed he should get tested. This was about five years ago, and it resulted in a diagnosis of early signs of dementia. It wasn’t until about a year and a half after that that he was diagnosed with Alzheimer’s.
I’ve always traveled back to San Francisco from New York for family gatherings. During these visits, I was able to see moments in time — snapshots of my Dad, if you will — and I began to notice the differences in him. It was probably more nuanced for my mother, who lives with him, but I saw it, and now make the 5,000-mile round trip to see him once a week most months.
As a caregiver, how do you make this long-distance, long-term travel work with your schedule as an anchor and reporter?
The practice of consistently going back and forth helps me gather the information I need in a short amount of time. I try to stay with my parents when I come back so I can observe the nuances and changes…how it’s difficult for Dad to brush his teeth or walk down the block to get a haircut. Sometimes it’s hard to put on a strong face, but I do what I can to help my Mom, who is Dad’s primary caregiver.
From a professional standpoint, I am so thankful my supervisor understands the situation I am going through. When we sat down to talk about changing my work schedule, I found out she was also a long-distance caregiver who traveled to take care of her mother. She knew I had to start thinking about options immediately. Like a good journalist would do, she brainstormed options, and six months later our strategy was in place. My boss has been absolutely supportive of my need to go back west, having four to five days off and working two and a half days a week. That is very uncommon for very practical reasons of the way journalism works but NBCUniversal has been nothing short of amazing.
Your mother was born in China, and your father in San Francisco’s Chinatown. Have there been difficulties or cultural barriers in finding a support system or talking about the disease?
We are a multigenerational Asian American family, and each of us assimilates differently, just as any American family does in their community, city and social circles. When it comes to the way we handle my father’s diagnosis, each brings individual strengths. More broadly, Asian American and Pacific Islander (AAPI) families like ours take on responsibility of caregiving without thinking twice – an unwritten and sometimes unspoken practice that family is number one. But interestingly, despite this core family strength, few talk about it, nor share best practices openly. That said, my Dad doesn’t fit the stereotype. He was always open to whatever had to be done when he was sick and the same is true with his Alzheimer’s.
One decision we made as a family was my Mom and Dad’s living situation. Instead of moving because of my childhood home’s dangerous stairs, we decided to remodel their house so my Dad wouldn’t be shocked by a strange living situation which could cause more loss of memory. Instead, we created a stairless ranch level apartment in their tall “Full House” type San Francisco home we all grew up in that would help Mom and Dad’s long-term living needs.
Interestingly, these are not topics we would typically talk about…long-term care, planning ahead…but because my father is so open, we were able to talk about it bluntly.
How has your profession helped you handle your father’s Alzheimer’s?
Taking a plane is second nature to me; it’s like walking out the front door. That is why, despite having the most demanding travel schedule of my siblings, going back once a week to help my parents is not a big deal. And as a journalist, I learned years back that in order to tell good stories I had to emotionally access parts of who I am that I wouldn’t have had to otherwise if I was not a journalist. I feel comfortable asking difficult questions about care facilities, financial planning and other sensitive topics. I don’t want to do it, but we need to.
How did growing up with a close family help you face the challenge of being a caregiver?
We’ve always been a tight-knit extended family. Twice a year, my father’s side of the family would go to the cemetery and burn fake money and leave food for my grandfather, along with his favorites – whiskey and cigars. At Christmas, we would have 90 people together – cousins, aunties and uncles all celebrating the holiday. From road trips à la the “Vacation” movies where we piled into the station wagon to see my Mom’s family in L.A., to gathering for Ching Ming, it was never explicitly said “you have to take care of your family” – it was simply understood. We were close, and we will always be close. It’s just how we are. Caregiving is an extension of that.
What are the tough moments you’ve faced since your father’s diagnosis?
There have been many emotional moments. Most recently my father has lost the ability to shave, and I helped shave him for the first time. He laughed and smiled and thanked me as I cleared his whiskers. As a young man, my father was the one who taught me how to shave my chin. So this latest change was symbolic. And it was saddening. But it was my honor, too. I want to be the one who shaves him every day – but I can’t.
What moments of joy have you found since your father’s diagnosis?
I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.
As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.
For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.
Your mom is your father’s primary caregiver. What has her experience been like, and what have you drawn from her strength?
Mom talks to one of her good friends whose husband also has Alzheimer’s. She also talks to some of her other close church friends who are also caregivers every couple of weeks. She has a support system but despite that, I know this road hasn’t been easy for her. In moments when she’s alone with my Dad and I am in the other room, I can hear the frustration of a person who had been steely, personable, forthright and honest her entire life. She comes from a golden generation of exceptional values, but I can sometimes see the crack in her armor.
I listen to and look at the other women (who I call aunts) that my Mom gets support from. The commitment they’ve all made is exceptional, without a squeak or a squawk. I wish I could draw just a little bit of that attitude and energy into my life and do something to the degree they do—it’s amazing.
When I am at home in San Francisco, I sometimes hear Mom speak to Dad in certain ways and I tell her that he won’t understand. What she has said is too much; it’s too complex. “No, no no….if I say it to him, he will listen,” she says with her endless amount of hope. And sure enough — sometimes he does. She doesn’t give up. She is a hidden hero. All caregivers are.
Richard Verdi, David Hyde Pierce & Richard Lui at the 2016 New York City Walk.
About Richard Lui: Richard Lui has had an illustrious career that has included roles in marketing, strategy and technology. Today Richard is a journalist and news anchor for MSNBC and NBC News and is known for his humanitarian charity work. He served as emcee for the 2016 New York City Walk to End Alzheimer’s.
Special opportunity: Make twice the impact against Alzheimer’s disease.
Today, we are announcing an extraordinary new opportunity for you to double your impact on Alzheimer’s disease, and I wanted to share it with you right away. We need your help to take advantage of this incredible new matching gift challenge.
Longtime Alzheimer’s Association supporter Cheryl Gross has made a pledge to give an exceptionally generous $1 million to the Association if we can raise that same amount by December 15. Cheryl is passionate about fighting Alzheimer’s and was inspired to make this generous gift in honor of her mother, who died from Alzheimer’s in 2011.
Like you, Cheryl understands the devastation that this disease causes and is committed to not only fighting it, but ending it. Her $1 million gift will go toward cutting-edge research aimed at methods of treatment, prevention and, ultimately, a cure. It will also provide much-needed care and support for those impacted by this deadly disease.
With this special opportunity, your tax-deductible year-end donation of $35 can become $70, $60 can become $120 or $120 can become $240. Any amount you give by December 15 will have twice the impact on our care, support and research efforts.
We cannot meet this matching gift challenge of $1 million without your support, so please give generously today.