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 caregiver will be a big change for both you and your loved one, and it can be more challenging with Alzheimer’s. Jacqueline Marcell, author of Elder Rage, offers tips on how to care for your aging loved one during this time.
Jacqueline Marcell was 46-years-old when she first found out her parents were diagnosed with Alzheimer’s. Unfamiliar with the disease and feeling the innate urge to take care of her loved ones, she left her home in Southern California and moved up to San Francisco to take on caregiving with a learn-on-the-job approach. Marcell quickly became infuriated with a lack of resources and uncertainty of health care professionals, and her father was also become meaner and more irritable with each passing day. She struggled emotionally, and physically.
Elder Rage is Marcell’s go-to guide for dealing with senior care and dementia based on her firsthand experience with her own family. It was never her intention to become an author, but having been through such a painstaking experience, she’s wrote the book for those who feel stuck, unsure and guilty by the daily grind of caregiving.
“You can’t get around it. Everyone deals with caregiving at some point in life. You’re either going to know a caregiver, be a caregiver or need a caregiver. If only I could have read my book back then I would have saved a whole lot of Kleenex.”
“The first title [of my book] was something my grandmother used to say, “Once an adult. Twice a child.” I thought it was very profound. Then, somebody in the publishing world told me someone in a bookstore might pick up the book and not know what it meant. So I thought it better to come up with something short and memorable, that really defined what the book’s about. It’s about elders. And, then it’s about rage—my father’s and mine.”
“I had to have my father hauled off by the police and taken to a psychiatric hospital for violence. I had never called 911 in my life.”
“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.”
“It cost mom and dad’s whole life savings, and most of my own. With the knowledge that I have now, I would know exactly where to go, what to do, how to find the resources and how to find the right doctors without solely relying on the primary care physician.”
“Diet played a huge role in my parents’ illnesses… eliminate sugar, cut back on starch and grains. Eat organic products so you can get the maximum nutrition density needed from food. You can’t start eating better early enough. There are too many people that are sick, or are going to be sick. And it all comes down to personal responsibility.”
“There’s a lot of good that comes from going to support groups. At first I was like, ‘Why would I want to go listen to other people’s problems when I have two right here?’ But solutions present themselves when your hanging around other people who are going though similar situations. If you don’t like the group you join—maybe someone takes it over with too many ‘woe is me’s’—then go to another one. If you wake up in the middle of the night and can’t sleep, there are support groups online.”
“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.'”
“I always tell caregivers that a roller coaster of emotions is normal. Who could not possibly feel burdened by going through this? And now people are living longer with this disease, averaging 10 years. It’s certainly not a sprint. It’s a marathon, a long journey to get to the end. And as soon as you think you have something managed, something else will happen— new doctors or insurance changes, for instance. 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.”
To purchase Jacqueline Marcell’s book, or learn more about her experience, visit elderrage.com.
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