Marisa Breese is one of the Junior Board’s newest members who worked to help put on their largest annual event, Paint the Night Purple. The evening was packed with activities- from appetizers and an open bar, live music, silent auction, raffles, and dancing! This night was a huge success and helps inform the Junior Board on ideas for next year’s event.
Marisa works in Public Relations for an agency in Chicago, has a 5-year-old Shepherd Collie mix named Harlow, and is a PADI certified open water scuba diver. When she isn’t spending time with her friends, playing volleyball, or traveling, Marisa is an active volunteer for the Junior Board.
“Hi, I’m Marisa! I first started volunteering alongside the Junior Board in February 2019 after looking up ways to get involved with advocacy and fundraising efforts related to Alzheimer’s. On my first outing with the Junior Board, we visited Sunrise Lincoln Park – a senior living community that specializes in memory care. We chatted casually with the residents, and another Junior Board member brought art supplies to create Valentine’s Day cards. Even though we were there for only a short time, I really enjoyed being able to have a positive impact on the residents.
I was inspired to find a group like this because I felt a personal connection to the cause. My maternal grandmother, Margot Gardiner (Gramma to me) is currently living with the disease. She was diagnosed with Alzheimer’s in 2017. At the time, there were only hints of the disease – she would misplace items or forget conversations. Treatment has helped keep the disease somewhat under control, but I still see a difference in her mannerisms and how she interacts with our family now. She’s always been the best grandparent – she used to be an amazing cook and seamstress, and she and my Papa (who’s taken on new roles to care for her) still try to attend every choir show, dance recital, sporting event, etc. that my cousins and I have been part of. It’s definitely been difficult for us to watch her gradually change, though, because of this awful disease. Her diagnosis is what prompted me to get involved with the Junior Board.
I’ve really enjoyed my time with the Junior Board over the past year. In the past year, I’ve had the pleasure of meeting other young professionals who all have a connection to this terrible disease, so we’re all very passionate about making an impact. So far, I’ve had the opportunity to volunteer several times at Sunrise Lincoln Park and once at Memory Rock Chicago (an annual fundraising event), and I joined the Junior Board’s Walk to End Alzheimer’s team this past October.
I was so excited to officially attend our Paint the Night Purple gala for the first time this year! I worked at the coat check as a volunteer last year, so this year was a chance to spend time with friends, family, and fellow Junior Board members at the event.”
Interested in our Junior Board? To submit an application, visit here.
As an unpaid caregiver, you commit time, energy and compassion to the ones you love who are living with Alzheimer’s. Chances are you’ve also had to cover some care costs out-of-pocket. Because you are a caregiver you might qualify for some tax benefits from the IRS. Though tax rules can be complicated and are subject to change, here are some expenses you might be able to write off. Talk to your tax advisor or accountant to learn more.
Medical expenses. Your loved one living with dementia may be considered your dependent for tax purposes. If this is the case you may be able to deduct their medical costs. Typically you can only deduct medical and dental expenses that are more than 10 percent of your adjusted gross income, but if you or your spouse were born before 1952 you maybe able to deduct medical expenses more than 7.5 percent of your adjusted gross income.
Note: Only expenses not reimbursed by insurance can be deducted.
Medical fees from doctors, laboratories, assisted living residences, home health care and hospitals
Cost of prescription drugs
Cost of transportation to receive medical care
Home modifications costs such as grab bars and handrails
Personal care items, such as disposable briefs and food
Dependent Care Credit. If you paid someone to care for the person with dementia so you could work or look for work, you may be able to claim the “Child and Dependent Care Credit” on your federal income tax return. If eligible, you would be allowed a credit of up to 35 percent of your qualifying expenses, depending upon your adjusted gross income.
You must have earned income
The person with dementia must be unable to physically or mentally care for him or herself
The person with dementia must be claimed as a dependent on your tax return
Flexible spending account. If the person with dementia is a dependent under the tax rules, you might be able to use your own workplace flexible spending account (FSA). This money can cover the person’s out-of-pocket medical costs or dependent care expenses in some cases.
For more information on deductible expenses and exemptions for caregivers, visit these links:
Paint The Night Purple is an annual winter fundraiser hosted by the Alzheimer’s Association Junior Board. Through the dedicated efforts of our Planning Committee, the event brings together young professionals from across Chicago for an unforgettable evening featuring an open bar and lavish hors-d’oeuvres, a silent auction, raffle, and live entertainment.
More than 1,000 Chicagoans come out each year and this event has quickly become the Junior Board’s largest and longest running fundraiser. Paint the Night Purple 2020 is on the horizon, and in honor of that we are featuring one of our newest dedicated Junior Board members, Joe Barron. Joe lives in Glen Ellyn with his wife Lauren, daughter Emery and two Vizlas, Gipper and Rudy.
“Hi! I’m Joe Barron, ALZ Junior Board member since 2018. I’m truly honored to be a part of this wonderful group of people to help find a cure for Alzheimer’s. Both of my grandmothers passed away from Alzheimer’s with one of them having lived with it for over 10 years. I now fight in their honor and for a future without Alzheimer’s.
In 2017, my wife and I started a board game company, Gray Matters Games, which donates a meaningful portion of profits to Alzheimer’s research. The last two years Gray Matters has been a sponsor for Paint The Night Purple and donated our entire line of games to the silent auction. Gray Matters also holds an annual Longest Day event of playing board games! Last year the event was held at Fair Game store in La Grange and raised over $3,000 for the Alzheimer’s Association. Nothing beats having a ton of fun while raising money for an amazing cause!
My favorite memory of PTNP has been dancing the night away the past two years to The Boy Night Band. My friends and I that attended PTNP were in high school when most of that music came out, so it felt like we were back at prom!”
My Dad was a hard-working and career-driven man for the majority of his life. Even though he had a successful career, we would spend every weekend together when I was younger exploring the City of Chicago and trying different ethnic foods and exploring the many diverse neighborhoods. Every weekend was an adventure for us. One of our favorite things to do was eat Chinese take out, and go bowling every New Year’s Eve. I will always remember his patience and kind way of living, and the true joy and laughter he shared when we were just doing the simplest of things together. He was a wonderful father, and we loved each other very much. Through the best and the worst of times, we stuck together finding comfort, joy, and encouragement in each other’s love. I will also always remember his strength and perseverance, and how he held our family together through both trying and joyous times.
Before my father’s diagnosis, I had recently moved out on my own and was living with two girlfriends in the city. I was ready to start my life on my terms, I had just accepted a management position with my company and had also recently met the man who would later become my husband. I was thinking a lot about my professional goals, and personal life goals at the time and working really hard to build a life I could be proud of and call my own. My time and energy were devoted almost entirely to making this happen.
On Easter one year, after I had moved out on my own, I invited my parents over to my apartment to celebrate the holiday. My dad got lost on the way to a place he had driven all his life. I knew then that something was not right, but he was resistant to getting medical attention at that time. Later that same year, my parents needed to move. Before we could get my parents safely into their new apartment, my father drove off and was missing for several days. It was absolutely terrifying for everyone involved, but he was safely found and we were able to slowly start to get them into a better situation. This really marked the start of the hardest period of my life, and the most transformative.
There was a period of transition in our relationship that was very difficult, my dad was so resistant to seeing a doctor in the beginning, it was hard to understand what was actually going on with him. So many things were frustrating and terrifying. After he agreed to go to a neurologist, and I was able to go with him and become involved in his medical care, a lot changed for us because we knew what was actually happening. Our relationship returned in some ways to how it had been- filled with love, and yet it was very different in others because I understood what I needed to do to connect to him. I was able to put my frustrations aside and be there for him. I became in some ways what my father had always been for me, a protector and gentle guiding hand trying to keep him safe and let him know how much he was loved.
Becoming a caregiver was the biggest learning curve for me, as my father was a strong man who was used to doing things his way, and in the beginning, it was hard for him to accept that his diagnosis of Alzheimer’s was real. It was a crash course in caregiving, starting in major crisis mode, and eventually becoming more manageable as I found strength within myself and support through our community.
I think it was because of our special and life long bond that I was able to meet my father with love, even in the most challenging of times. Love motivated me to adjust my thinking and communication with him and to see him for who he always had been to me, and who he was inside. I never lost my loving father, even as his neurocognitive functioning and mobility declined. I saw very clearly who he was through his genuine smile and expression of emotion. I learned to listen and to see him on a deeper level, and I always found him there, truly.
I’m very grateful I found the Alzheimer’s Association when I did. After my dad’s diagnosis, I attended a care navigation meeting by myself, because my father refused to go. It was the first time someone was able to relate to me about my situation. I was 31 at the time, and my peers had no idea what I was going through or how to help. I was able to talk honestly about my situation with someone who understood what I was going through. They offered ideas, resources, and support for caregivers. It opened my eyes to the fact that there are resources available, you have to be willing to look for them, but they are out there. It also reminded me that I needed to take care of myself in order to be able to take care of my dad.
Three months before my father’s death, we moved him into an assisted living facility. He was entering the later stages of the disease at this point. However, his death was actually very unexpected, leaving our whole family shocked. One week before he passed away, I was able to visit and spend some time with him. We talked a lot about the past and the future. He knew I was applying to graduate school and he encouraged me. We told each other how much we loved one another, we didn’t know it would be the last time. I am so grateful that we had that chance, and what a comfort it has been to know that he knew how much he was loved. I have no regrets, because I really did try to do the best I could, and I know my father knew that. In some ways, we feel his passing was a blessing and that he did not have to go farther into the cruel grips of the disease. I think we find peace in that.
Alzheimer’s is a cruel and unforgiving disease that steals from those living with it. I have anger, I have hurt, it took from me someone who meant the world to me, and I miss my father every day.
I wanted to share my story because I think it could help someone else. Meeting someone who understood what I was going through meant more than I can express. As my life goes on, I hope that I can be that person for someone else, maybe many others. I hope to stay involved with the Alzheimer’s Association, and maybe even work with them one day using my skills as an art therapist and licensed counselor. As my father always said, “Life is not a sprint, it’s a marathon”. And I keep him with me as I run it.
A native of Chicago, Illinois, Paul Bernstein built his legacy as an attorney. A graduate of DePaul Law school, Paul met his wife Dolores working in a firm where she was hired as a clerk. Before long, they fell in love and got married, blending their families of Dolores’ four children and Paul’s three, a second marriage for both. The children took to Dolores immediately, as did most people, according to Paul. “Dolores was a natural when it came to everyone she ever met, always taking a wonderful liking to her. I enjoyed making new friends with her even though those friends were much more likely to remember her name and not mine!” Paul was proud of the strength of their marriage, and it stood the test of time as they developed a life together in downtown Chicago. Unexpectedly, Dolores and Paul took in one of their grandchildren when she was around seven years old. Raising and caring for her for upwards of nine years, Paul and Dolores developed their own little family with their granddaughter. Dolores’ passion for dancing, playing piano, and violin was contagious and eventually rubbed off. “Dolores’ love of dancing caught on with our granddaughter, and we went on to live a great life and raise a super grandchild!”
Paul and Dolores’ marriage was full of love and life, improving every day even when it felt as though it couldn’t get any better. They both remained in good health while they raised their granddaughter, allowing them to enjoy all the experiences of life together as she grew up. As avid lovers of travel, they spent any free time they had seeing the world together. “Our life before the diagnosis was great and got greater with every day of our life together. This was a second marriage for both of us and we lived each day to the maximum.”
After 45 beautiful years together, Dolores was diagnosed with a rare form of dementia for which there is no cure. As her disease progressed, Paul terminated 98% of his law practice to become a 24/7 caregiver for his loving wife. A committed and adamant caretaker, Paul sometimes slept on the floor of their apartment in front of the door to prevent Dolores’ wandering out in the middle of the night. There were easy days and more difficult days, but Paul’s love and commitment to the love of his life never wavered in the face of adversity. “I cannot say I enjoyed every part of it, but it never gave me a reason to give up or not show the love of my life, that through the good and the not so good, how much I owed her for our loving lives together- and so whatever it took, I did!”
After two years of 24/7 care taking, Dolores and Paul were given a prognosis of about six months. Though it ended up being seven months, Paul appreciated the honesty and directness of the neurologist regarding the projection. “Honesty is the best policy. Undertaking this kind of responsibility takes honesty, sincerity, and willingness to try.” Paul remained by Dolores’ side until the very end. After 47 years of joy and happiness, Paul said goodbye to his loving wife. Though it was a difficult and sometimes painful end, he has no regrets about how he handled it. Taking time off work to focus on Dolores’ needs, making her comfortable and happy, was a commitment Paul stuck to with steadfastness. “I just cannot think about any life other than asking God that when I go, I end up in the heaven that Dolores is in, and that we live happily ever after… knowing we had a fantastic life together and would enjoy even more further on.” Though dementia is a powerful disease to battle, Paul’s commitment to his wife was unwavering and it is stories like these that solidify the Alzheimer’s Association’s pledge to find a cure.