Children’s Book author encourages honesty for families facing dementia together

Written by Laura Smetana

A few years after my son was born, my dad was diagnosed with Alzheimer’s disease and vascular dementia. It was a big change for our family, as we shifted to being his primary caregiver. Before my dad was diagnosed, he was a very active grandparent—he loved playing with my son at the park, going on walks, helping us garden, and inviting us over for weekly barbecues and ice cream. But as his health declined, he was no longer able to do many of the activities he loved. He moved from his home to an assisted living facility, then memory care, and eventually was enrolled in hospice care.

Understanding Alzheimer’s disease and other dementias is hard for adults, but it’s especially challenging for children, who see the changes but don’t fully understand why the changes are happening. We realized we had to be honest with our son and explained that his grandpa had a disease that was changing the way his brain worked, that it wasn’t his fault, and that the disease wasn’t contagious. Seeing a loved one decline physically and mentally is hard, and it was important for us to have ongoing discussions about the changes we were seeing, to validate our son’s feelings, and to acknowledge that we felt sad about it too. It was also important for my son to maintain a relationship with his grandpa and to feel like he was doing his part to help—whether it was assisting with his grocery shopping, picking out the flavor of his protein shakes for the week, getting the ice cream when we visited, or drawing pictures to decorate Grandpa’s walls.

Laura sits on the floor of her kitchen beside her dad and son, enjoying vanilla ice cream cones.
Laura with her dad and son eating ice cream.

Despite my dad’s diagnosis, they were able to maintain a meaningful connection through a shared love of ice cream. My dad gave my son his first taste of ice cream when he was a baby and from that moment on, they always enjoyed having ice cream together. After he moved to assisted living, their favorite activity became visiting the ice cream parlor every weekend. When we got my dad’s groceries, my son proudly delivered tubs of vanilla ice cream to stock his freezer, and in memory care they enjoyed ice cream together at the family nights. A few days before my dad died, he asked my son if there was any ice cream. My son asked the nurse, and she gave him two cups of chocolate ice cream–one for each of them. It was their last interaction together and it was a beautiful full circle moment.

Laura smiles and holds a copy of her vibrant Children's book Ice Cream with Grandpa.
Laura holding a copy of Ice Cream with Grandpa.

Their relationship became the inspiration for my book, Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia, which is told from a child’s point of view and beautifully illustrated by Elisabete B. P. de Moraes. It chronicles the loving relationship between a grandson and his grandpa, before and after his grandpa is diagnosed with dementia. It also includes a guide with tips for talking to kids about dementia, hospice, death, and grief by expert on grief and loss, Diane Snyder Cowan, MA, MT-BC, CHPCA. Having these conversations with children can be challenging, and the guide is a great resource to help parents and caregivers get started. It is the book I wish I had at the time, and I hope it helps other children and families navigate their own journeys through dementia and loss.  

After my dad was diagnosed with early stages of dementia, we felt overwhelmed and didn’t know where to turn for help. Where would he go? What long-term care options were there in the area? What resources were there to help? How quickly would the disease progress? How would we explain it to our child? There was so much unknown, and we needed help navigating the road ahead. Not only were we learning about how the disease would affect our dad and our relationship, but we needed to figure out practical things like where he would live, legal matters and finances, and how to access quality care.

My colleague told me about the Alzheimer’s Association 24/7 Helpline (800.272.3900) and I remember spending my lunch break at work on the phone with a helpful staff member who answered all of my questions, and followed up with an email with a link to the Community Resource Finder, information to assist in making long-term care decisions, and a residential care checklist that we were able to print and bring with us when touring different facilities. These resources were invaluable as we navigated my dad’s changing living situation.

Throughout this journey, we turned to the resources for caregivers on the Alzheimer’s Association website to learn about what to expect as he progressed through the different stages of the disease, and how to make sure he got the support and care he needed. Navigating the challenges that come with caregiving for a loved one with Alzheimer’s disease and other dementias can be overwhelming, but knowing that the resources on the Alzheimer’s Association website were just a click away, and that the Helpline was just a call away, was a huge relief. I knew I wasn’t alone on this journey and that support and reliable information would be there when I needed it.

Raising funds and awareness about Alzheimer’s disease and other dementias is so important. There is still a stigma and shame about the disease that can make people feel uncomfortable about sharing their diagnosis and it can be difficult for friends and family to maintain a relationship with loved ones as they progress through the disease. The changes can be physical, emotional, and behavioral—and it can be very hard to witness a loved one who no longer seems like the person you used to know. There were days my dad didn’t believe we were his family. Sometimes he would say “That’s not you!” That was hard for us, and I can only imagine how he must have felt, but we tried to meet him where he was in his reality and eventually, we would gently move on to other topics of conversation. Every day was different, some were more challenging than others, but we continued to adapt and share many wonderful moments together. The more people know about the disease, the more understanding, support, and compassion there will be for people living Alzheimer’s and other dementias—and hopefully with more fundraising and awareness, we’ll advance further towards finding additional treatments and eventually, a cure.

A colorful watercolor illustration of the Grandpa and grandson in Laura's book sharing bowls of ice cream at an ice cream shop.
An illustration from Laura’s book.

I want people to know that no matter how much our loved ones change as they progress through Alzheimer’s disease or other dementias, they are still our loved ones. We can still enjoy spending time with each other, and they can still feel the love and kindness we show up with. The things we enjoyed doing together with my dad changed, but some things remained the same, like our shared love of ice cream. Every week brought new challenges, but there were joys too and those were important to celebrate and cherish.

Some days my dad was very chatty. One day when my dad was in memory care, we suggested my son tell Grandpa some of the jokes he learned in his new joke book. My son succeeded in making my dad laugh, and it was the first time he had laughed in months. That was a moment to celebrate. Then my dad started telling my son some of his favorite jokes, and soon we were all laughing together. That was such a wonderful, joyous moment of connection—and it became the inspiration for one of the scenes in Ice Cream with Grandpa.

Other days my dad didn’t want to talk, but he didn’t want us to leave either. One day my dad and I sat together in silence for an hour, exchanging glances and having a conversation with our eyes. An hour is a long time when it’s our instinct to fill the silence, but it was one of the most beautiful moments that I shared with my dad. In my head I was having a conversation with him, and it felt like he was conversing with me through his eyes too. It was a beautiful moment, one that wouldn’t have happened if I had just said, “Well he doesn’t want to talk, I guess I’ll just leave.” He wanted to talk with his eyes, so that’s what we did. I met him where he was, in his reality at that moment, and I’m so grateful I did.

Find Laura’s book Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia on Amazon, Barnes & Noble, and IndieBound.

Fashion fundraiser raises thousands to honor organizer’s mom

“It has been a difficult road to accept the effects of the disease,” shares Dan Brophy of his mother’s condition. She was diagnosed with early-onset Alzheimer’s disease in 2015, but Dan and his family noticed symptoms of her condition years earlier. He honors her by hosting an annual fashion fundraiser with the Alzheimer’s Association.

“My family has learned how to navigate the sharp decline in my mother’s memory,” Dan shares. “Over the years, I have learned how to best interact with my mother by providing smiles and love and not letting the pain control my emotions….People who do not have firsthand experience do not realize the other aspects of life it affects. It is something that cannot be stopped. Accepting that is beyond challenging – to accept the deterioration of a loved one’s memory. Because if we do not have our memories, then what do we have?”

Despite its hardships, Dan values the community that his mother’s Alzheimer’s disease has brought to their lives. “My mom has been living at a memory care facility for 5+ years now,” says Dan. “She has received wonderful care and it has been a blessing to meet others with similar conditions.” Dan found encouragement and support by getting involved with the Alzheimer’s Association. 

Four men wear fun accessories and grey The Longest Day sweatshirts at the 2021 Fall Catalogue Night.
Dan and crew at Fall Catalogue Night 2021

Dan teams up with friends and family to host an annual fundraiser called Fall Catalogue Night, an extravagant fashion event which takes place every autumn in Chicago. “Guests are encouraged to wear their most fashionable attire and attend an evening of live music, auction items, beverages, local art, and community with the goal to raise money for the Alzheimer’s Association,” Dan shares. The ninth annual event will be held through The Longest Day, a DIY fundraising program with the Association. It provides a personal fundraising page and year round staff support to guarantee Fall Catalogue Night is successful. 

“The event brings together many friends, some of whom have relatives suffering from Alzheimer’s,” says Dan. The group shares personal stories – both heartfelt and humorous. The event is meant to be “a celebration of life (and fashion)” to uplift attendees while raising critical funds for an urgent cause. Their 2022 goal is to raise over $35,000 for Alzheimer’s care, support and research. 

“Come to Fall Catalogue Night and you will see how fun it is to raise money,” he encourages. “You will also hear from many people about how your money positively impacts those who are suffering.” In addition to hosting his annual fundraiser, Dan participates in Walk to End Alzheimer’s – Chicago. This year, his Walk team has a new member: his new baby daughter. As a new parent, Dan’s fight against Alzheimer’s is more important than ever.

Dan wears a grey The Longest Day sweatshirt while holding his new baby daughter.
Dan and his newest partner in the fight to #ENDALZ

Dan wants to educate more individuals on the Alzheimer’s epidemic. More than 6 million Americans are living with Alzheimer’s. By 2050, this number is projected to rise to nearly 13 million. “It affects so many people,” Dan shares. This should be a worldwide community goal to give everyone access to healthcare and support so they can deal with the emotional toll…It would give me great pleasure to say that my small efforts contributed towards a cure.

Anyone can join the fight for a cure by hosting their own fundraiser with The Longest Day. Whether it’s a lemonade stand, a restaurant give-back night or a large scale fashion show, every dollar raised moves the needle forward. “It should be of utmost importance to get funds for research,” he shares. “The utility that this would bring to the world is immeasurable.” 

Turn an existing event, hobby or passion into a fundraiser for Alzheimer’s. Get started at alz.org/tld. Activities can take place at any point in the year, with many focused around the Summer Solstice (June 21). Join the fight against the darkness of Alzheimer’s with The Longest Day.

Sowing the seeds of awareness with ALZ Stars

“Working here has humbled me,” shares Randy Hauser of his job at ClarkLindsey retirement community. As horticulturist at the Champaign-Urbana facility, he has seen many residents journey through Alzheimer’s disease and dementia. Randy decided to honor the ClarkLindsey residents and raise awareness for the disease by running the 2022 Bank of America Chicago Marathon on team ALZ Stars.

As an outgoing member of the ClarkLindsey team, Randy has gotten to know many residents – especially those who share his love of gardening. Many people are eager to interact with him as he works around the community grounds. “People are drawn to it,” he shares. The opportunity to interact with him was particularly valuable at the height of the COVID-19 pandemic when indoor socializing was at a minimum. 

ALZ Star athlete Randy kneels in front of bright yellow, white and pink tulips on a sunny day outside at ClarkLindsey.

Through his work, Randy met many individuals impacted by Alzheimer’s disease and dementia. Some started in the independent living setting, then slowly needed around-the-clock support in the memory care center. The speed at which the disease progressed shocked him. “I was amazed at how fast those stages can happen,” he says. 

Randy hosts a number of programs for memory care residents at ClarkLindsey, including “Planting the Seeds.” He has residents scatter zinnia seeds, then watch as the bright blossoms grow over time. For Randy, if that program can bring even a bit of light and color to the memory care center, his job has been worth it. 

Randy plans to raise awareness and funds for the Alzheimer’s Association by running the 2022 Bank of America Chicago Marathon on team ALZ Stars. His employer ClarkLindsey is an annual sponsor of Walk to End Alzheimer’s – Champaign/Urbana, and Randy is using his love of running to further support the fight against the disease.

“I call myself a ‘hack runner,’” Randy says jokingly. “Most people don’t expect me to have run around the block, let alone a marathon.” He says if he can run long-distance, anyone can run long-distance.

Randy began running on a smaller scale, starting with 5K races. He eventually progressed past 10Ks and half marathons to his first full marathon in 2012. He hopes to run twenty marathons total and is already well on his way. This year’s Chicago Marathon will be his twelfth 26.2 mile race — his fifth one in Chicago. 

“I’m not a running purist,” Randy says. He isn’t interested in finishing times or placing first. Instead, running is meditative for him. It’s also a way of “being with” his dad, who he lost suddenly to a heart attack a decade ago. 

This is Randy’s first year running with a team in the marathon’s Charity Program. “I wanted to make it about something bigger than me,” he shares. “I’m 58, very healthy and very lucky…I’m excited for my little thing to be part of a big thing.” Experienced and novice athletes alike run with team ALZ Stars. They raise hundreds of thousands of dollars for Alzheimer’s care, support and research every year. 

Randy enjoys the Chicago Marathon because of the excitement and support from the crowd. Spectators typically gather along the entire route, cheering runners and offering words of encouragement. While the crowds cheer him on, Randy also wants to offer them something: he wants people to see his ALZ Stars singlet and inquire about the Alzheimer’s Association. He hopes people will visit alz.org to learn more about the Alzheimer’s crisis in America. Hopefully, some attendees will find the resources and support they need because of him.

Randy recently completed a half marathon in Champaign/Urbana to kickstart his marathon training. He continues long runs to prepare for the 26.2 miles in Chicago on October 9. He plans to run future marathons as part of the ALZ Stars team. With every step he takes, Randy is moving us towards our vision of a world without Alzheimer’s and all other dementia.

Limited entries for ALZ Stars are still available. Visit act.alz.org/alzstars2022 to sign-up.

Illinois Board Member receives 2022 Rita Hayworth Gala Philanthropy Award

Dani (R) with Alzheimer’s Association CEO Harry Johns.

We are thrilled to congratulate Alzheimer’s Association Illinois Chapter Board Member Dani Jachino on her 2022 Rita Hayworth Gala Philanthropy Award. Dani is a tireless and passionate leader in the fight to end Alzheimer’s and all other dementia. From advocating for a more dementia friendly state to being a repeat Walk to End Alzheimer’s Elite Grand Champion, Dani is an invaluable part of our organization.

“My Mother lived the last year and a half of her life in a dementia unit,” Dani shares on her Walk to End Alzheimer’s fundraising page. “My Dad’s brother and sister died of Alzheimer’s, as did another aunt and uncle. Friends’ parents died of the disease. Friend’s spouses have the disease. I do not want it and I do not want you to have it either.

The 2022 Chicago Rita Hayworth Gala was held on Saturday, April 23 to raise funds for care, support, research and advocacy. The event was founded by Princess Yasmin Aga Khan in honor of her mother, Rita Hayworth, who died as a result of Alzheimer’s disease. The first Rita Hayworth Gala was held in New York in 1984 and expanded to Chicago in 1987.

I am deeply honored to receive the Philanthropy Award. However, it’s not the end of the journey,” Dani says. “There is much more to do so we fulfill our vision of a world without Alzheimer’s and other dementia – for future generations.”

Dani accepts her award at the Rita Hayworth Gala.

Dani first got involved with the Alzheimer’s Association after placing her mother in a memory care facility. Dani attended a support group where she connected with others facing similar challenges. She deepened her involvement by becoming co-facilitator of the support group, chairing four Chicago Walks to End Alzheimer’s, becoming a member of the Alzheimer’s Impact Movement Leadership Society and joining the Illinois Chapter Board of Directors fifteen years ago.

This will be Dani’s final year on the Illinois Chapter Board of Directors, but her impact in the fight to end Alzheimer’s will continue to be felt. We thank Dani for the countless ways she strengthens our mission and brings hope to families facing the disease across Illinois and the nation.

Out of the Heartache of Alzheimer’s, Passion Leads to a Legacy

My name is David Myers, and my wife Cheryl was diagnosed with Alzheimer’s in 2012 at the age of 47.  Being diagnosed at such a young age creates many issues that I was not prepared for.  We have two children who were 20 and 17 when Cheryl was diagnosed and were at the age where they were just starting to enjoy hanging out with their mother.  Our family and friends rallied around us and supported us through her Alzheimer’s journey, trying to fill the void. 

If you had told me the kinds of things I’d have to do for her, I would have said I couldn’t do it. But I did do them, and I overcame things that I would’ve struggled to do for anyone else. After 32 years, I truly believe that there was nothing I wouldn’t do for her.

It takes an emotional toll.  But there is a financial toll as well.  There are many things I worried about financially.  We prepared for the worst and hoped for the best.  

We were able to keep Cheryl at home throughout her journey by utilizing in-home care.  We received assistance from the Illinois Department of Rehabilitation Services, which came in and evaluated our situation.  This service is available for people under the age of 60 that receive a dementia diagnosis.

What happened to us wasn’t something you’d expect.  No one would expect it.  But there are many unexpected things that happen in life.  I would encourage others to get their financial affairs in order before there’s ever a need.

I was afraid to talk to anybody about my finances for fear that they would say to me “what were you thinking?”  I didn’t want anyone to tell me I should have done better.  Luckily, we had life insurance, and after Cheryl passed away, I needed help in making sure that money was there for my kids.  

I did not know anything about finances, so I finally bit the bullet and scheduled an appointment with a financial advisor, and we had a conversation about priorities, passions, and future plans.  We really didn’t talk about money until the end just so they knew what I had.  They gave me things to think about that I had never contemplated, like when you take social security and things like that.  

I am now better prepared for my future, and I have options I never knew were possible.  But it’s not just about finances, it’s about a cause I believe in and spend an abundance of my time and efforts giving to the Alzheimer’s Association for the work they do and the desire I have to walk alongside others on this journey we call Alzheimer’s.

I have had many roles with the Association as a volunteer, organizer, and a leader.  From organizing the   Cheryl’s Holy Walkamolies Alzheimer’s Walk Team (follow link for information on the walk or to donate), to providing educational webinars and educational programs to groups that want to know more. 

I even helped start a support group just for men that are taking care of their wives. I’ve found only men going through similar circumstances understand, and it’s easier to open up and share.  This all led to being asked to join the Illinois Board of Directors for the Association to assist with building Alzheimer’s support down state.  In this role, I’m committed to making a difference in helping others with the best way to care for those affected by this disease.  

A very personal part of my mission in fighting Alzheimer’s was born out of a personal experience my wife and I shared together.   Cheryl and I got our first motorcycle as a married couple right after she was diagnosed and spent many hours together just riding and enjoying our time even after she couldn’t communicate.  Because that was something we enjoyed, I started the “We’re Alz Ridin For a Cure” Motorcycle ride to raise support and awareness for the disease.  July 23 we are adding a car show to the ride and will be starting and ending at BloNo Pizza in Bloomington, Il.  If you ride, or just like cars, trucks and motorcycles, please come out and support us.  We will have silent auctions, pizza, and the bar will be open.

 My number one goal is to raise money and awareness for the support of those living with Alzheimer’s and all the money raised stays here in central Illinois.

If you have questions or need assistance, please call 800-272-3900 anytime and someone will help you.  Seriously, these phones are manned 24 hours, 365 days a year.  Also, if you would rather check out the Alzheimer’s website, you can go to ALZ.org.  And finally, If you would like to talk about any of the above, please reach out to me at davem9@frontier.com.

This article first appeared on McBeath Financial Group’s website. Read the full article here.