Some people as they grow old refer to their old age as the ‘Golden Years,’ but what if those years aren’t so golden? What if that period in their life is filled with a mental or physical disability, like dementia or Alzheimers? What if that period in their life is filled with rage from their disability targeted at their own children? What then?
When you’re a young adult you might think about your parents getting old or sick, but how many of us think really think much about being their actual caregivers. The fact is many children become caretakers for their parents. Statistics show more than 65 million people or 29% of the U.S. population, provide care for a chronically ill, disabled, or aged family member.
Jacqueline Marcell was 46 years old when she first found out her parents were diagnosed with Alzheimer’s. At the time, Jacqueline was living in Southern California. She was unfamiliar with the disease, but as their child, she felt the innate urge to take care of her parents.
Deciding to care of her parents was not an easy decision. It required much thought and careful consideration on Jacqueline’s part. Afterall, deciding to take care of her parents would be challenging and change her life forever. It wasn’t that her parents were just old, but they both had Alzheimer’s disease. Jacqueline, at the time, knew nothing about Alzheimer’s.
What is Alzeheimer’s?
Alzheimer’s is the most common form of dementia. It is the general term for memory loss and other cognitive abilities that interfere with one’s daily life. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. It’s the top cause for disabilities later in life.
Worldwide, nearly 44 million people have Alzheimer’s or a related dementia. However, according to Alzheimer’s Disease International, only 1-in-4 people with Alzheimer’s disease have been diagnosed. In the United States, 1-in-9 Americans over 65 has Alzheimer’s disease. In addition, 5.3 million Americans are living with Alzheimer’s disease.
For Jacqueline, caring for both her parents was going to be an uphill challenge. That challenge was going to be filled with feelings of guilt, depression and frustration. It was going to be painful and stressful.
As Jacqueline stated later,
“Making the decision to care for an aging loved one with Alzheimer’s disease or dementia is not a decision that should be taken lightly. Becoming a caretaker will be a big change for both you and your loved one, and it can be more challenging with Alzheimer’s.”
Jacqueline began her journey as a family caregiver. She left her home in Southern California and moved to San Francisco to take on caregiving with an “on-the-job” learning approach. She quickly became infuriated with a lack of resources and uncertainty of health care professionals. With each passing day, her father became meaner and more irritable. As a result, with each day Jacqueline struggled emotionally, and physically.
As time progressed, Jacqueline would later discover that her father’s pattern of anger and rage masked his own symptoms of Alzheimer’s. Her father’s rage was a coping mechanism and a conseqence of the disease.
“My father had always been 90 percent wonderful, but boy-oh-boy that raging temper was a doozy. He’d never turned his temper on me before, but then again, I’d never gone against his wishes either. When my mother nearly died from his inability to care for her, I had to step in and risk his wrath to save her life–having no idea that in the process it would nearly cost me my own.”
During her father’s early signs of dementia, Jacqueline said,
“I spent three months nursing my mother back to relative “health”, while my father would tell me he loved me one minute and then get furious over some trivial little thing, call me nasty names and throw me out of the house the next. I was stunned to see him get so upset over the most ridiculous things, even running the washing machine could cause a tizzy–and there was no way to reason with him. It was so heart wrenching to have my once-adoring father turn against me.
“I immediately took him to his doctor and was astonished that he could act completely normal when he needed to. I couldn’t believe it when the doctor looked at me as if I was the crazy one. She didn’t even take me seriously when I reported that my father had nearly electrocuted my mother and that he’d left the gas stove on and nearly burned the house down. Much later I found out that my father had instructed her not to listen to anything I said because, “all I wanted was his money.” (Boy, I wish he had some.)
“I didn’t understand that my father was addicted and trapped in his own bad behavior of a lifetime of screaming and yelling to get his way, which was coming out intermittently in spurts of over-the-top irrationality.
“I also didn’t understand that ‘demented’ does not mean ‘dumb’ (a concept not widely appreciated), and that he was still socially adjusted never to show his ‘Mr. Hyde’ side to anyone outside the family. Conversely, my mother was as sweet and lovely as she’d always been.”
Jacqueline went on to say,
“Dementia is a large umbrella term— Alzheimer’s is just one type. There are many, many types of dementia. The perception from society is that if you have dementia—Alzheimer’s, perhaps—then you don’t know what you’re doing. People don’t understand that dementia starts very slowly, and so intermittently. It comes and then it goes. It exacerbates behaviors that have been there for a lifetime.”
From Marcell’s firsthand experience with her own family, she has written a ‘go-to-guide’ for others dealing with senior care and dementia called Elder Rage. It was never her intention to become an author, but having been through such a painstaking experience, she wrote a book to support others who feel stuck, unsure and guilty by the daily grind of caregiving.
In her book ‘Elder Rage‘, Marcell goes on to describe her adventure of becoming a parent to a parent,
“It’s awful. I just wanted my mom and dad back. They had always been there for me, and now I needed to be there for them. You have this idea you’re going to fix them, like you’re going to go home one day, and it will all be back to normal. But, it’s just not true. It’s a real adjustment. It’s a long goodbye. You go through grief when they’re still alive. And you keep trying to make it better while wondering when it’s all going to end—when are they going to die? And then, you think, ‘how can I think such a terrible thing.’ Then there’s the guilt and thinking, ‘I’m a terrible person.’”
Marcell also offers personal and first hand advice to support other caregivers such as when to seek professional help, resources for financial support, and finding support groups.
As she describes the journey as a caregiver to her parents with Alzheimer’s, Jacqueline says, “it’s a marathon….as soon as you think you have something managed, something else happens.”
“Sometimes, the life of a caregiver takes the back seat, but be sure to put your health first. There’s just no other way around it. If you go down, who is going to take care of your loved one? I began taking care of my parents, and boom—I got breast cancer, and there’s no previous cancer history in our family. So, really, anything can happen, and it happens to caregivers a lot because of all the stress.”
“Care giving for a parent with Alzheimer’s disease is notoriously difficult; care giving for a violent parent whose Alzheimer’s goes undiagnosed can nearly kill you.”
As the title of Jacqueline Marcell’s book suggests there are different kinds of rage from her father’s violent rage at her when she tried to help him and her ailing mother, to her subsequent anger at him, and her rage at the eldercare system that failed to diagnose his early-stage Alzheimer’s and provide assistance or protection.
Thankfully, the book is full of hard-won advice on how family caregivers can get help.
We hope you will support Jacqueline and her book ‘Elder Rage‘. Please share with others who are caregivers for their own parents with dementia or Alzheimer’s. The book also contains helpful information including 10 warning signs of Alzheimer’s and information about treatments.
Although Alzheimer’s currently has no cure, symptoms can be managed with medications and behavioral strategies.
Marcell’s Elder Rage is available on Amazon and has received over 500 5-star Amazon reviews and more than 50 endorsements. Pick up your copy today right here. You just might make a big difference in someone’s life tomorrow.