I admire Kate Swaffer for sharing her experience with early-onset dementia with the world. If you haven’t been following her, I highly recommend doing so. She offers great insight and tips for how those with dementia can be better accommodated so they can continue living their lives to their fullest potential.
via Kate’s blog:
Thanks to SBS for posting my article, written specifically for their website recently. Read: ‘I was diagnosed with dementia at 49. It turned out to be a new beginning
Filed under Awareness & Activism
I read Lisa Genova’s fictional account of a professor diagnosed with early-onset Alzheimer’s disease quite a while ago, and was quite moved by the novel. I was excited to learn that Julianne Moore, one of my favorite actresses, was playing the lead role. It is rewarding to see the film receive so many positive reviews, and Moore collect many awards and accolades for her sensitive portrayal of the main character. The fact that one of Hollywood’s most respected actresses took on this role and is now receiving Oscar buzz will hopefully help raise awareness.
Some have questioned the focus on the familial form of early-onset Alzheimer’s disease, which is quite rare, but I think there is value in showing the general public that Alzheimer’s is not just an “old person’s” disease. The more readers and moviegoers can sense how profoundly this disease can destroy someone at the prime of their life, and the devastating impact the disease has on families, hopefully the more donations will come in for research and care funding.
BSM Studio/Sony Pictures Classic
It’s worth noting that one of the film’s directors, Richard Glatzer, has ALS, another disease that slowly robs one of their independence.
I went to see the movie on a Monday afternoon, and was pleasantly surprised to see about 30-40 other theater patrons. I expected only a handful. Let’s face it, the movie is not escapist, blockbuster entertainment.
I thought Julianne Moore offered a very sensitive and realistic performance. She spent a lot of time talking with those who have early-onset Alzheimer’s disease, as she was determined not to show anything in the film that was not accurate. The movie mainly follows the book, with some changes that I didn’t think hurt the story.
As for the rest of the cast, Kristen Stewart was well-cast as the youngest “black sheep” daughter. What I found most profound about the film was that Alice so wants her youngest daughter, who is an aspiring actress, to be like her other children (one’s a lawyer, the other in med school.) Before the disease, she cannot see how her own profession, as a linguistics professor, is more closely aligned to the theatre world than law or medicine. As the disease progresses, Alice and her youngest are able to bond over language, even as Alice is rapidly losing her ability to communicate.
I thought Alec Baldwin was miscast as the husband but he gave a surprisingly restrained performance (not easy for him!)
So definitely a must-see. Perhaps because I read the book and knew what was going to happen, I didn’t find it to be a total tear-jerker, but it did leave me profoundly moved.
Filed under Awareness & Activism
NPR recently featured an interview with Greg O’Brien, a journalist with early-onset Alzheimer’s.
I found O’Brien’s personal take on Alzheimer’s quite profound.
I like how visually he described the disease, saying, it is like “a plug in a loose socket” that you keep trying to plug in but eventually it stops working and the light goes out.
On Pluto by Greg O’Brien
The one point that really struck home with me was when he describes how having Alzheimer’s disease forces you to find your own identity each and every day. He says the pieces of his self-identity, the who, what, when, where and how are like cards carefully arranged in a file cabinet.
“Then at night, someone comes in and they take all the files out and they throw them all over the floor. And then you wake up in the morning and say, “Oh my God, I have to put these files back before I realize my identity.”
I thought that was a very simple yet powerful way to sum up this disease.
O’Brien has written a memoir, “On Pluto: Inside the Mind of Alzheimer’s” and I plan on reading it soon.
If you have read the book, I would love to hear your thoughts.
Filed under Awareness & Activism
Many of the people I follow on WordPress are dealing with a parent or grandparent with dementia. A few are dealing with a spouse, and with this, comes an entirely different and complex set of issues.
I finally got around to reading the memoir, “Jan’s Story,” by CBS correspondent Barry Petersen. The book has generated some controversy. Petersen’s wife, Jan, was diagnosed with early-onset Alzheimer’s at the age of 55. Petersen’s account of how Alzheimer’s impacted their relationship is frank and heartbreaking. After arranging for her care at home for several years, he finally places her in a residential facility as the disease progresses. Eventually, at the point where his wife barely remembers who he is, he begins a tentative new relationship with another woman.
It’s the latter details that many find distasteful. Some of the couple’s friends turn against him, and some readers of his memoir feel he is selfish in his actions.
I certainly do not feel I am in the position to judge other caregivers, as there are many things I would do differently in dealing with my father’s dementia. I think hearing the male perspective is important when it comes to being a caregiver of a spouse with dementia. The breakdown of intimate relations is a side effect of dementia that many would rather not discuss. For Petersen, the loss of intimacy with his beloved partner is devastating. The transformation from lover to parent is traumatic. The difficult decision he makes are agonizing for him and I don’t believe were made on a whim.
The book brings up a host of interesting questions. Especially with early-onset Alzheimer’s, should the caregiver be left in relationship limbo when it may take a decade or more for the disease to finally cause physical death? As long as one provides good care for their spouse, is it acceptable to find affection outside of their relationship?
For some, “until death do you part” means just that, no exceptions. I respect that. But dementia has a way of turning the normal way of doing things upside down.
For those wondering, Jan died in 2013, a few years after the memoir was published.
Filed under Awareness & Activism
I finally read “Still Alice” by Lisa Genova. The book came out over five years ago and has been sitting on my must-read list for almost that long. After recently hearing about the upcoming movie adaptation starring Julianne Moore, one of my favorite actresses, I put aside my other reading selections and immediately dived in to the novel.
“Still Alice” is unique because it attempts to capture the Alzheimer’s experience from a character with early-onset Alzheimer’s as she experiences the early to middle stages of the disease. This is Genova’s first novel, but as a neuroscientist, she has another important angle to add to the book.
While the main character, Alice Howland, is a respected Harvard professor, I still connected with her and could imagine my reactions being very similar to hers if I should ever be cursed with this dreaded disease. Genova does a great job of showing how those in the earlier stages of Alzheimer’s work so hard to cover up their symptoms and appear “normal.” Then one day, even their best efforts are not enough. Genova also illustrates how much fear and dread those with Alzheimer’s experience, most of it retained in an internal dialogue that their loved ones may be completely unaware exists. Some readers may be turned off by how the husband is presented in the book, but I think his response to his wife’s disease is pretty realistic, if unfortunate.
The story immediately draws you in and the main character is well-developed. She is a witty, sensitive intellectual which makes her mental decline all the more heartbreaking.
I highly recommend the book if you haven’t read it yet. If you have, let me know what you thought about the story.
Filed under Awareness & Activism
☆☆☆☆☆ By eMediHealth ☆☆☆☆☆
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