November is National Family Caregivers Month, a time to celebrate and honor all caregivers who give so much of themselves to provide care for a loved one.
Here at the South Carolina Chapter, we have a special place in our hearts for the caregivers who choose to become advocates for the cause. Some are in the midst of their caregiving journeys, and some have chosen to honor the memories of those they have lost by speaking up for others whose lives have been changed by Alzheimer's or other dementia.
This month, we honor them and their stories.
Advocates on behalf of his wife, Jan
My precious bride of 32 years, Jan, was suddenly stricken with Alzheimer's Disease in 2020. While many were trying to figure out how to work through the Covid pandemic, we were working our way through our own crisis of how Alzheimer's Disease was changing our lives.
Life has been very different for us these last two years. Jan's adulthood has been reduced to that similar to what a child might go through in ages 2 to 4. Many days she wonders why we live in a different house from where she used to live. But what house does she remember? The one we lived in for 18 years, the one we lived in when we were first married, or maybe a childhood home. We just do not know. But what we do know, is that she lives most of her days in confusion and restlessness. So much that she needs round the clock care.
Caring for a loved one with any form of dementia can be exhausting. I, a spouse of someone living with the horrible mind crippling disease of Alzheimers, spend most of my days very tired. I'm either providing the care solo or trying to manage a schedule of professional caregivers that can change at any given moment. I'm fortunate to have a great team, but things can change at any given moment. A caregiver might need to call off work for the day, have an unexpected family emergency that comes up, an illness themselves, or just need a break from the arduous tasks of cooking, cleaning up after, and trying to calm someone who doesn't understand most of a day's activities. Dementia sufferers want to tell you how they feel, what they want to eat that day, or join in conversation with you, but cannot. Therefore, a caregiver often spends their own mental agility trying to understand the needs of their charge.
Besides being a 24/7 on-hands manager of care, I have my own health and sanity to consider. All caregiving loved ones know that caring for yourself often gets pushed aside. I used to be a very fit guy in my 60s. I was training for a fifth Ironman competition when my wife's illness came on suddenly. Obviously, my training and competition life changed. I don't begrudge caring for the bride who is the love of my life. But I, like many a caregiving spouse, lose track of our own physical and mental needs. We don't want to. It just happens.
Today, an estimated 50 million people worldwide are living with Alzheimer's or other dementias, including more than 6 million Americans. In the United States alone, more than 11 million friends, family members and professional caregivers are providing their care. A nearly 2:1 ratio. The cost for care of one with dementia does not come cheap. I alone spend $13,000.00 a month caring for Jan, aside from daily living expenses. She and I retired with a comfortable nest egg, but that is getting eaten up very quickly with professional caregiving expenses.
The 24/7 care, the mental and economic strains, and my own physical health are just a few of the many reasons why I am an advocate for care and finding a cure of these wretched disease of the mind. One day this terminal illness will take my bride's life. On that day the whole world will hear me cry. But my caring won't end with Jan's life. I want to continue in the fight to find relief for the 6 million sufferers and 11 million carers.
Alzheimer's Congressional Team Member, District 6 (Congressman Jim Clyburn)
Advocates in honor of her family
I am a strong advocate for Alzheimer's because I have witnessed firsthand through family members how this disease has caused devastation and so much loss that leaves many families broken.
As a PhD candidate at the Medical University of South Carolina, I currently study electrical changes in the brain and how these changes can help us develop treatments to target neurological diseases like Alzheimer's disease. Working in a lab that studies these diseases allows me to bridge the gap between scientific research and helping others to get closer to a cure.
Reaching a cure and restoring families with this cure, is the ultimate goal and if I can play a part in that then that's all that matters.
Alzheimer's Congressional Team Member, District 3 (Congressman Jeff Duncan)
Advocates in memory of her grandpa
I am an advocate for those affected with Alzheimer’s, largely in part because of losing my dear grandpa in 2012. He lived with the disease for about 16 years. The first couple of years, I was only vaguely aware of his behaviors or his diagnosis because he lived in a different state.
As I look back now, I see things he did to make special memories. Our birthdays, only 6 days apart, were always a special time. I can now see how much of a strong man he truly was. My grandpa served for 24 years in the Army and then another 15 years working for Burke County Sheriff's Department. He did all of that while raising 5 children, serving many years on church boards and running self-started businesses.
My grandpa always welcomed everyone into the family, those that were not blood related, individuals with disabilities and those adopted into the family. He never questioned how someone came into the family; he only offered strength to everyone. Grandpa had Parkinson’s disease, along with Alzheimer’s.
I remember the last time I saw grandpa “healthy” was only about two years before a major decline and then his death. When I saw him for the last time, he was barely alive, it seemed like he was a sack of bones. We were lucky, I guess, that he had so many “good years” and that he didn’t suffer for an extended amount of time. Still, he did suffer, as well as all of us not having him in our lives. I am excited to be an Alzheimer’s Advocate so I can share my voice for those impacted by Alzheimer’s.
Whatever your availability or experience, we invite you to make a difference by sharing your story as an advocate and joining our volunteer team. Submit our interest form today.