The number of people impacted by Alzheimer's and dementia is sobering. On the front lines, caring for the 5 million people with the disease, are an estimated 15 million unpaid caregivers - the majority of them spouses or children. These people face incredible challenges physically, emotionally, and financially. Did you know that 59% of caregivers report being on call 24/7 for the last year of their loved one's life?
Most caregivers I know eventually reach a point where they feel completely helpless and hopeless. They exist day to day, just surviving.
It can feel hard to help a caregiver. They often don't ask for help, especially from friends, but they need your support. Here are a few things you can do that will makes a difference:
Need more ideas? Click here for a list of other suggestions, but not matter what, get off the sidelines and find a way to help.
I created this graphic to illustrate what all too often happens to primary caregivers as their loved one's disease progresses. As the stresses increase, your social connections drop off, to the point where you are almost completely isolated. With no support system to help you cope, the stresses start to take their toll, both physically and emotionally. Taking steps to maintain connections is vital to your health, and your ability to care for the one you love. Have you experienced this, or are you going through it now? What are you doing to keep yourself healthy?
My sister sent me this video on empathy over the weekend. It's one of those rare things that speaks for itself and needs no comment from me. Whether you're a caregiver or not, I promise it will improve your day.
Those of you who have not experienced being a caregiver to a loved one with Alzheimer's might think empathy would be a constant; a naturally and frequently occurring mindset. But it's not. You are often so tired, frustrated, angry, guilt-ridden, and overwhelmed that empathy for your loved one can't find its way in. And also, a person with Alzheimer's isn't behaving like, say, someone going through chemo. Not by a long shot! They may reject you, be mean and spiteful, hit you, and develop unpleasant habits that will stretch you to the point where you don't know how in the world you can possibly do it another day. And there will be so many more days to come.
Throughout mom's illness my sister Amy was my hero for many reasons, but primarily because through it all she had so much empathy for Molly and what she was going through, no matter what the circumstances. It was a beautiful thing so see, and it changed me.
When I think of what drives me everyday, what comes to mind are memories with my grandpa Joe, Nana Sue and the meaningful encounters I've had since Pa Joe's passing from Alzheimer's disease in 2012.
The moment in time that is etched into my memory is a photograph I took when my grandpa spent time at our house. He's wearing a green-colored plaid shirt with a matching flat cap and an ear-to-ear grin. His arms are outstretched, showing the funny man he was. He's sitting in the corner chair with this perfect expression that makes me happy when I re-imagine him there today. He was always the one to set the mood with his easy-going personality, silly noises and Italian heritage. Other very special moments include our family trip with Pa Joe to a Laguna Beach gelato shop, a trip to the soccer field together, family meals around Thanksgiving and Christmastime, the countless times my grandma told me how much he loved the scrapbook I made for him and the memory of our last moments together. His dedication to family, his generous spirit and his joy in the tiny pleasures of life are what drive me. He drives me to find meaningful ways to help those who are in his position today and who will be in the future. If he was around today, I'm sure Pa Joe would be rooting for an End to Alzheimer's and for the creation of innovative treatments, products and services to help individuals and their families. He is dearly missed in my family.
Prior to Pa Joe's diagnosis with Alzheimer's, the disease wasn't even on my radar. Today, it's something I think about everyday, a topic for which I sought professional education and training for and and the niche where I see myself serving others, at the intersection of my personal passion and what I feel I'm best at.
My grandma who we call Nana Sue also inspired me in her devotion to providing the best care for Pa Joe. Nana Sue was my grandpa's primary caregiver. She made sure that Pa Joe was happy and that he was well taken care of. She made sure that we all could spend quality time together and approached the entire situation with empathy and compassion. Back then, I didn't really understand what was involved in being a family caregiver, but now I know all the ins-and-outs, except for being a full-time caregiver myself. I learned in my training that caregiving can be an extremely rewarding and special experience with a loved one. However, I also learned that social isolation, depression and poor health can result and contribute to caregiver burnout. The USC Family Caregiver Support Center taught me the importance of self-care activities, one of the key elements of their "Caregiver Checklist."
Pa Joe's journey through this disease led me to some very meaningful moments in my volunteer work and in my career with individuals with Alzheimer's disease.
My first experiences were as a volunteer at the Alzheimer's Activity Center in 2010 and later again in 2012. The most meaningful moments were the countless times I witnessed clients "coming alive" to music, singing along even with communication difficulties, dancing Irish jigs and crying in response to the music. Some of my fondest memories in life are from co-facilitating this group-singing program that elicited these reactions and positive changes in mood. I cherish the memory of learning "Danny Boy" and then performing it with a client of the day care program. I can't adequately explain the power of that experience. I remember the special moments when clients "introduced" me to the members of their large families via scrapbooks they carried with them. I also remember the tender care the staff provided, as well as the happy inter-generational gatherings with the adjacent preschool. From taking walks together, to sunbathing, to cutting strawberries, every moment with the clients was wonderful. These experiences drive me daily because I know that even with a diagnosis of Alzheimer's, people CAN and DO THRIVE. People with Alzheimer's have taught me about what's important in life. I've deduced that love, family and human compassion are at the heart of why we are here. I believe we are here to support and have positive impacts on others. What was also hammered home in my experience and training is that there is no treatment available to prevent, slow or cure Alzheimer's disease, so research needs to be prioritized.
More recently in my USC graduate school training, I've had the privilege of meeting people with Alzheimer's disease who live in residential care settings. My newest drivers are from these remarkable people who I had the pleasure of knowing. I've seen the power of life-story informed interactions and the power of name, touch, music and respect for preferences and routine. I am driven by these residents' families and members of the care team who have become champions for the #EndAlz movement by walking in their communities and by advocating on the state and national stages. I am also moved by the increasing attention that Alzheimer's is getting in the media, for example, in Lisa Genova's novel, "Still Alice," that was adapted to the big screen. One of my favorite clips from the film is when Lydia Howland (Kristen Stewart) asks her mom, Alice Howland (Julianne Moore) what it's like to have early-onset Alzheimer's. Founded by Seth and Laura Rogen, Hilarity for Charity is an organization that aims to educate millennials about Alzheimer's disease and spur their interest in advocacy and fundraising for the cause. Through advocacy, Alzheimer's disease is starting to get the attention it deserves from government representatives who can have great impacts when bills like the HOPE for Alzheimer's Act are put into motion for this 114th Congress.
All in all, I am motivated by my family and the people I've met along this journey and the experiences I've shared with them. To me, the best part about living is sharing it with other people. Alzheimer's disease is heart-breaking, but we can all be strong and lean on each other in the long fight to defeat it. I think the key to remember is that we're never in this alone. Family, friends and neighbors can help caregivers have some time for themselves to see the doctor, go shopping, visit a friend or complete a chore. They can provide different types of support that are vital to staying healthy. I know not everyone has people in their life they can count on, but in this journey with Alzheimer's or with a loved one with the disease, there are caring individuals who are happy to help.
A young man caring for his 73-year-old father with Alzheimer’s does not complain about the demands being a caregiver has placed on him, nor does he shy away from the toll his dad’s disease has taken on his own life. Instead, he is looking for positive ways to impact and support others in his situation: to help them be able to “go out to dinner, or on a date, or to a child’s wedding,” he says.
Vince Zangaro, who lives in the Atlanta area, last year launched the Alzheimer’s Music Fest to raise money to support others in his position. His father Albert, diagnosed at 62, was a former Eastern Airlines mechanic; his mother died at 55.
Last year’s concert raised more than $13,500 and another concert is planned for this weekend. Vince is optimistic that the nonprofit the concert helps fund, Caring Together in Hope will make a difference to those who have dedicated their care to a loved one.
Read his story and more about his life with his dad in this Atlanta Journal-Constitution article from Aug. 15.
And don’t miss the poignant You Tube video and Vince’s music, “A Better Man.” Many of you will recognize yourselves and the devotion and care you are lovingly giving, despite the difficulties and frustrations.
When Junior Seau committed suicide three years ago, it was not from depression, despair or financial ruin but from a debilitating brain disease caused by traumatic brain injury during 20 years of hard hits on the football field. The disease, chronic traumatic encephalopathy (CTE) was responsible for behavior that included mood swings, forgetfulness, insomnia and detachment. It is being studied by the National Institutes at Health and Boston University which said that 34 pro players and nine college players suffered from the disease. CTE is just one of the degenerative forms of dementia affecting an increasing number of patients, friends and family in the United States.
As Seau was inducted into the Football Hall of Fame last weekend, his 21-year-old daughter Sydney had a speech prepared to give -- a request he made before he died -- but was not allowed due to a NFL rule. The New York Times printed it on front page of the Sunday Sports section, and while it does not tell a lot about Seau's injured head, it does say a lot about his heart.
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