In his early 70s, Larry Clifford had several benign tumors removed. Having dodged the “cancer bullet,” he looked forward to years of travel, pickleball and golf in retirement.
Then, he started having seizures. After multiple visits to the ER over an extended period of time, an MRI revealed a previously undetected tumor in his brain. While the subsequent operation was a success, recovery was painstakingly slow.
In many ways, he didn’t recover at all, his wife Sharon Clifford says. Asked for a signature at a local bank, he turned to his wife and asked, “How do I spell Clifford?”
“It is painful to watch the man I married slowly go away,” she says, explaining his steady decline in the past 6-8 months. “He used to be so active,” Sharon Clifford says. “Now he just sits around and waits for me to come home when I’m gone.”
“He doesn’t want to do anything but watch game shows and reruns on television. Nothing new. He gets anxious easily, too, and upset over little things.”
She explains that her husband gets fixated on things and suspicious of what he perceives as slights. For instance, he wanted a key to the car even though he no longer drives.
“It was like a security blanket for him,” Sharon Clifford says. “Not having a key for him was like saying ‘You are not important.’ Being respected is very important to him.”
Sharon Clifford’s experience is not unique. Facebook posts from spouses and family members dealing with dementia or Alzheimer-related illnesses echo similar themes in the early stages of a person’s decline: apathy, anxiety, suspiciousness, irritability, and distorted memories.
According to the Dementia Society of America, dementia is not a specific disease, but a syndrome describing a wide range of medical conditions affecting the brain. These include Alzheimer’s, Huntington’s, Lewy Body, Traumatic Brain Injury, and other brain-related diseases.
These brain disorders manifest themselves in a variety of ways including changes in physical abilities, moods, memory, personality and language skills.
Dementia affects more than 6 million Americans today and the National Institutes of Health (NIH) estimates that more than 42% of adults over the age of 55 will eventually develop some form of dementia.
Learning about and understanding dementia symptoms and caregiving strategies can help us prepare emotionally and financially to assist family members, if needed. It can also help us advise and support neighbors and friends who may feel bewildered or overwhelmed.
Both my father and older sister had dementia-related illnesses which became apparent in their mid-70s. They were physically active prior to the onset of memory loss. But in addition to declining memories, they became anxious and uncertain about many things as their illnesses progressed.
Before they passed, they had trouble relating to others except for close family members. While Mom had my Dad participate in various experimental studies at Intermountain Health Care, nothing seemed to help.
Today, there are a wide variety of resources that are increasingly available to caregivers and family members navigating loved ones with dementia. The 36 Hour Day is perhaps the most well known and well researched book on dementia and how family members can assist and support loved ones dealing with it.
In addition, Memory People is a Facebook awareness and support group for caregivers and family members interested in sharing encouragement and experiences while getting suggestions from others who are dealing with dementia.
Reading stories from this and other Facebook groups addressing dementia and Alzheimers-related illnesses, it is apparent that getting support from others is essential for both caregivers and persons affected by these diseases. With support groups so readily available both online and in person, no one needs to go it alone.
“Just reading the posts [of others] is an education,” Linda Buytendorp writes. She has led several caregiver discussion groups since her husband passed away after spending the last four years of his life in a memory care center. Support groups can offer emotional assistance, reduce isolation, provide a safe place to express concerns, and offer practical advice and shared experiences.
“Most of all, no matter how outlandish the stories he tells are,” Buytendorp advises, “don’t correct him. To him they are true and so you are calling him a liar and that is liable to result in a situation you don’t want to happen.”
Others agree. People with dementia are often inclined to tell about past experiences that either didn’t happen or occurred very differently than they recall at that moment. Taking exception to these stories or experiences does little good and could lead to distrust and even paranoia, some medical providers say.
“It is good to be aware not to argue. I had a list of do’s and don’ts,” Wendy Shores says in relating to her mother during the early stages of her dementia. “Yielding works best in early stages to keep the dignity that is still there.”
Mike St. Clair developed his own list of do’s and don’t while caring for his wife during the last several years of her dementia-related illness. He started every morning reading this list as a helpful reminder to himself:
- Agree, never argue
- Distract, never shame
- Reassure, never lecture
- Reminisce, never say remember
- Repeat, never say “I told you”
- Ask, never demand
- Encourage, never condescend
- Reinforce, never force
The prevalence of dementia and its impact on a greater number of people is not inevitable, many experts say. Researchers are discovering both preventive and, in some cases, remedies for various forms of dementia.
For instance, recently, the connection between dementia and cardiovascular disease — and how individuals can reduce their risk — has been studied. According to Harvard researchers, between 30-40% of these cases can be avoided through smoking cessation, healthy diets, exercise, and blood pressure and cholesterol management. In fact, in the past 25 years, dementia rates in the United States have actually declined 13% per decade.
While these shifts offer no guarantee, it’s clear that healthy lifestyles can be a major preventive factor in avoiding or delaying dementia-related diseases. Still, it’s unclear how to heal many brain-related illnesses that cause dementia.
So, caregivers will continue to face difficult circumstances with many long nights and potentially long years supporting loved ones. Finding support groups to share both ongoing frustrations and tiny miracles can make it easier. We all benefit by lightening our load and sharing our burdens together.