I first noticed signs of my mother's dementia during a trip home to Minnesota. I remember feeling panicked. You see, my dad had Alzheimer's disease and needed full-time care for more than five years. That long, awful journey took a terrible toll on him as well as my mom, who was his primary caregiver. My sisters and I watched helplessly as my dad turned into a shell of a person.
Now I was envisioning a similar journey ahead for my mother.
Upon returning to my home in California, I had dinner with a friend. Relaying my fears about my Mom's disturbing behavior, it was suddenly all too much and I began to cry.
Instinctively my friend reached over and patted my hand. After a minute, she settled back in her chair and said, "I understand, Nancy. Yet, it could be a lot worse. At least your Mom doesn't have something really serious like cancer."
I recall being stunned and feeling confused.
Later, I realized that her comment had actually made me very angry. Yes, certainly cancer -- and any serious disease -- is horrible. No one wants to battle any life-threatening illness. However, many, many cancers are now curable or treatable. Patients can often live cancer-free or in remission for a long time and maintain a good quality of life.
Dementia, on the other hand, is a slow, progressive, always-fatal disease. There is never a chance for remission or "beating the odds." There is no cure or treatment to halt the disease.
Now that I've moved back to my tiny Minnesota hometown to help care for my Mom, I often think of my friend's uninformed comment. At the time, she was only trying to make me feel better, yet she obviously had no idea about the effects of this terrible disease. No one close to her or in her family had suffered from dementia.
I've realized that without the first-hand experience, it is difficult to fully comprehend how dementia can ruin lives.
Dementia erases a person's memory, changes their personality and takes away their dignity. It places huge financial, physical and emotional burdens on families who must care for their loved ones -- and, I should add, most of those caregivers are women. It's a cruel, drawn-out death.
A friend recently called it "the worst disease ever." I think she's right.
If you follow dementia and Alzheimer's disease research, you will know that the Obama administration recently announced its first national strategy to fight Alzheimer's -- the most common form of dementia. Calling it "one of the most-feared health conditions," it outlined a program with the goal of finding effective treatments by 2025. However, I've since read that this effort is woefully underfunded.
From what I can tell, dementia research is splintered and we're not close to a cure or even those effective treatments. I shudder to think of what will happen as my generation, the baby boomers, ages and becomes more vulnerable to the disease.
There are more than 75 million baby boomers -- our largest generation ever -- and every seven seconds, another boomer turns 60.
The clock is ticking. We need a fully-funded, coordinated national effort or we face big troubles ahead.
Today, when I think about dementia, I still get angry. How does it make you feel?
Follow Nancy Wurtzel on Twitter: www.twitter.com/@nancywurtzel
Thanks for writing about this much undiagnosed disease
These past years have changed my life. My mother, once so reactive to one's political persuasion, religious affiliation, skin color and sexual preference (to name a few), has dropped every one of those 'attachments to form' and occupies the present moment exclusively.
Had I shared her political, religious and other views I might experience this as a tremendous loss. But the chasm between us that these differences created made a close relationship with her difficult prior to the dementia.
It will sound odd but this opportunity to heal had been a gift. I see now how her care-giving as a nurse and as my paraplegic father’s devoted companion is in her blood. She can’t witness the struggle of a fellow resident without literally extending a hand to help and she can’t sit down to a meal without trying to give away her food to a hungrier, perhaps needier resident. At her core she is, as we all are, pure shining love.
Care-giving definitely takes its toll; and long term care insurance as mentioned eases the burden. I have come to view my mother's loss of faculty as a sacred time to access compassion in myself and to gently begin the process of letting go - of her, and of my own 'attachments to form'.
The best thing he ever did apart from marrying my gem of a grandmother was purchase long term care insurance. He paid into the policy for 30 years and it has allowed him to live in a one bedroom facility with all meals- should he have to move to a more skilled facility due to deterioration it will cover that cost as well.
Please, please get long term care insurance. It will lessen the financial burden on your families and allow them to focus more on what is important- your health and well being.
Thank you so much for sharing this and writing this post.
Amy Ferris
Author: Marrying George Clooney, Confessions From A Midlife Crisis (Seal Press)
Suicide is the only human right that cannot be taken away. They can only prosecute you if you fail.
The illegality of Suicide is one of the ironies of our day.
I've seen an segment on CBS Sunday Morning that the ketones in virgin coconut oil have been very helpful in giving Alz. pts. better functioning. It seems that when the insulin receptors in the brain have been destroyed, the brain CAN use ketones to keep the brain functioning. This is no total cure, but along with other meds, can help.
For those who are concerned about getting the disease, keep track of your blood sugar, no matter what your age or weight. Even if you don't have symptoms of diabetes, it can be important to check the blood sugar, as most people with Alz. don't have DM.
Several news stories on NBC, ABC have covered the loss of insulin in Alz., as well Dr. OZ. There is a pharmaceutical product that has a concentrated version so that the brain cells get fed and don't die.
Being a teenager with a father who doesn't know who you are broke my heart. My dad would continually look at me and ask who I was, and if I'd seen his daughter 'she's only six.'
Eventually, he was put into the nearby hospital that had a ward suitable for sufferers. He stayed there until he died. Even now, people don't know the real reason why my dad died, because to them, Alzheimer's is something that only 'old' people get, grandparents, not parents.
Within 10 minutes after their departure yesterday, Sallie looked at me and said.."I sure wish I could have seen the grand-kids today". It breaks your heart.
On the other hand, the politics of dementia is very similar to the politics of cancer, with high powered advocacy groups calling for a solution by a certain date and an all out "war", again. Like all other efforts that had these unrealistic expectations, this one will fail just the same. But while it does so, it will give near endless funds to the leaders of these political efforts and it will make them feel like they are important, influential people. And isn't that what's really important?
In short, it makes me feel like we all need to take more action NOW.
The coconut oil has these ketones. You can Google coconut oil for Alz. and find a lot of info. Puzzles and memory training can help us in many ways, but Alzheimer's is a form of diabetes and needs to be treated as such.
Thank you for the efforts that you have started to help those with this terrible disease.