L.J. Ruth was 12 years old when his grandfather, who had been battling Parkinson’s disease, was diagnosed with dementia. Although his grandfather passed away in 2017, his grandmother was diagnosed with dementia that same year.
With his mother now caring for his grandmother full-time, L.J. knows firsthand how challenging dementia caregiving can be. After recently holding a fundraiser and charity drive to support local family caregivers, he sat down with the Alzheimer’s Association to share his story.
How has day-to-day life changed since your grandmother’s diagnosis?
“My mom’s life has changed dramatically which has been hard on me. My mom can no longer work because she cares for my grandmother full-time doing all her life’s tasks – paying her bills, managing her finances, insurances, health care, keeping up her home, etc.
“Caring for my grandmother takes a lot of my mom’s time away from our family, which adds a lot on my dad and I. Plus, seeing my mom so stressed out causes me sadness. Nothing is the same anymore because not knowing what each day may bring is challenging for all of us.”
What are the most challenging and rewarding parts of being a caregiver?
“To be honest, being the son of a caregiver has been tough. Because my mom has to react at the drop of a hat, be prepared for emergencies and has to deal with things like my grandmother calling us over 200 times a day, every day, it makes for huge amounts of stress on the whole family. We understand it is part of her condition, but it’s still hard to handle.
“My mom says being able to give back to a parent is the greatest gift of all, albeit the toughest job she’s ever had. As for me, making my grandmother happy by a simple visit is really rewarding. I have learned by watching my parents that being a caregiver is way more tough than I ever would have thought.”
Tell us about your charitable project.
“I did a GoFundMe to raise money for my Eagle Project called the ‘NoTimeToPackSack.’ I also solicited family, friends, businesses, elder care attorneys, physicians, etc. for items for my project. The Alzheimer’s Association Florida Gulf Coast Chapter is the beneficiary of my project, and they will receive 200 pre-filled bags for caregivers.
“I interviewed several caregivers, researched online and also asked my parents what they thought would be helpful so they would be better prepared in emergencies, which can often be really stressful. I read that a caregiver can often be the difference in a life-or-death situation, so being prepared is critical. Due to my personal experiences, I chose to focus on caregivers of those with Alzheimer’s/dementia.
“My NoTimeToPackSack is filled with a blanket; USB phone charger for both Apple and Android, along with a three-foot cable cord; a medical emergency paperwork checklist; patient information sheet; pen and notepad; a hearing aid keeper box; sanitizer; hand lotion; toothbrush; toothpaste; disposable masks; an activity book; snacks and water.”
Why did you select the Alzheimer’s Association as the beneficiary of your project?
“I am a Life Rank in the Boy Scouts and am in pursuit of my Eagle Rank. That requires having at least 21 merit badges, having held leadership positions in the troop and managing a project for a nonprofit organization. On Saturday, May 15, I held an assembly day and my Scoutmaster and other scouts came out to help me put 200 NoTimeToPackSack bags together.
“I chose the Alzheimer’s Association because it had special meaning to me and my family. I used the Alzheimer’s Association’s mission statement to support my choice because it says ‘to provide and enhance care for ALL affected.’ That included caregivers in my mind. Watching my parents and talking to caregivers really showed me how truly important that job can be. Plus, the Scout’s motto is to ‘Be prepared,’ and my project fell right in line with this.”
Why should others support caregivers?
“Caregivers are often overlooked – especially those who aren’t professional or being paid. Caregivers give so much of themselves but don’t get the recognition they deserve. I can’t imagine where my family would be if my mom and dad hadn’t stepped in to care for my grandparents. Professional caregivers or facilities can be expensive, so many people have to rely on their family or friends to help out. Caregivers are totally necessary for anyone with Alzheimer’s or dementia because they cannot care for themselves once their condition progresses to a certain point.
“During my research online for this project, it said that caregivers need help with their caregiving duties, emotional support, understanding, recognition and time to recharge. None of these things cost money and are simple to give. Anyone can help in these ways, and I encourage everyone to join me in caring for a caregiver.”
Why is it important for to fundraise for those affected by Alzheimer’s?
“I have now seen firsthand what a difficult illness and condition this is, but if it hadn’t affected my family personally, I’m not sure we ever would have understood the true challenges that come with it. You hear stories, but to live it is a completely different thing.
“Fundraising helps raise awareness, and the more people that know about this, especially earlier in life, like me as a teenager, gives us the opportunity to really be proactive now and possibly make a difference in our own future.”
About L.J. Ruth
When he’s not participating in the Boy Scouts or running his NoTimeToPackSack project, L.J. is an accomplished teen actor, model and voiceover talent with over 10 years of commercial, film and voiceover experience.