By Valerie D. Lockhart
SUN EXECUTIVE EDITOR
Balling up her fists, Lillian banged on the front door and yelled, “Let me out!”
The 83-year-old woman had been living at her daughter and son-in-law’s home for the past eight years. Yet, she didn’t remember where she was and demanded they open the door.
As her daughter made sure the iron clad security door was locked, her mother became enraged and started to hit her. The scene had become a familiar one, taking place at least twice a week for the past year.
“Sometimes, I feel like opening the door and letting her go,” said her 59-year-old daughter Liz. “My mother has Alzheimer’s, and it’s been rough caring for her the past year. I don’t want her to end up wandering on the street lost and scared. And, I don’t want to put her into a nursing home, but I need help.”
Like Lillian, more than five million people are battling Alzheimer’s in the United States. About 170,000 people in Michigan are afflicted with the disease.
According to the Alzheimer’s Association, Alzheimer’s is “a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”
To boost awareness of the warning signs, President Barack Obama proclaimed November as the National Alzheimer’s Disease Awareness month.
“During National Alzheimer's Disease Awareness Month, we join with researchers, health care providers, and patient advocates across our country to lift up all those who are battling this disease every day. As we come together to raise awareness about Alzheimer's, we honor the individuals who lost their lives to it, as well as the devotion and selflessness of the millions of caregivers who endure the financial and emotional strains of this disease. In their spirit, let us continue our work to end this debilitating ailment and its devastating effects,” declared President Obama.
“Now, therefore, I, Barack Obama, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2014 as National Alzheimer's Disease Awareness Month. I call upon the people of the United States to learn more about Alzheimer's disease and support the individuals living with this disease and their caregivers.”
Although there is no cure, Alzheimer's medications can temporarily delay symptoms and improve quality of life for those with Alzheimer's and their caregivers.
Recognizing the signs of Alzheimer’s early on is key to starting treatments to slow down its progressive stages.
Signs of Alzheimer’s include: forgetting recently learned information, experiencing difficulty in following a plan or working with numbers, having a hard time completing familiar tasks, losing track of dates, times and seasons of the year, failing to understand visual images such as their reflection in the mirror, misplacing things, having difficulty in following a conversation or repeating themselves, paying less attention to their grooming or hygiene, withdrawing from social activities, and undergoing changes in their mood or personality.
“Life is so much different since our world became engulfed with all things Alzheimer’s,” said Karen Garner, a mother of two young children whose husband was diagnosed with the disease at age 48. “I feel like a small pilot light inside of me has now been ignited and is ready to spread like a wildfire. No day is the same and no day is easy. There are days when Jim barely acknowledges me or our kids. He is in his own world. It is hurtful. It is lonely. It is heartbreaking. And I know it’s only going to get worse. Luckily, I know I am not alone. I think of what I am going to do to help others. By helping others, I will help us. It is a continual shifting back and forth, like water in an eddy.”
Caregivers must also be prepared to handle changes those with Alzheimer’s face.
"Even though you can be mentally prepared and realize that the change is coming, you're never emotionally prepared when it happens,” explained Carol, who takes care of her husband with young-onset Alzheimer's. “Every time a big transition occurs I cry, mourn the loss, and then roll up my sleeves and figure out what changes I need to make for the new normal. Dealing with Alan's anxiety and personality changes was a very difficult time, and made even more challenging because we didn't understand what was going on. Alan became very verbally abusive, which was totally out of character for him. Our immediate family thought it was stress caused by working in a family business. My daughter feared for my safety and even suggested I think about divorce."
Support groups for caregivers and maintaining a busy schedule has helped families to cope with stress associated from caring for those with the disease.
“With two young children at home, I was unable to wallow in my self-pity. I am no longer afforded the luxury of thinking too far ahead, dreaming of a life enchanted. Luckily we are an active family with hectic schedules; this helps me focus on my to-do list and not on our plight,” added Garner.
Some use their personal experience to empower others.
“As an advocate, I have chosen to use my voice while I still can. It gives me a sense of purpose, and a reason not to give up,” said Terry, 59, who started a support group after being diagnosed with younger-onset dementia. “I encourage others living with Alzheimer’s and related dementias to consider advocacy as a way to feel empowered and engaged in their own lives.”
It is the encouraging words from other caregivers that empowers Liz to continue to care for her mother.
“I will survive. It may not be pretty. It may not be quick. It may cost me everything I cherish, but I will survive with the help of friends, family, strangers and myself,” she says. “I must survive for my family and for other caregivers that are struggling just as I am. We will all survive together, knowing that we are not alone. Feel the love and the power of others rooting for you to endure.”
For additional information on the Alzheimer’s Association, visit online at alz.org or contact the Michigan Chapter at (248)351-0280. A help line is also available 24 hours, 7 days at (800)272-3900.