Looking back, there were so many things I could have handled differently over the course of my mom’s illness. To put it bluntly, I just didn’t have a clue! The result? Life became a series of reactions to things I couldn’t control.
If my experience can help ease another family’s journey even just a bit, maybe it wasn’t all for naught…. To that end, I’d like to thank the fine folks at Better for inviting me to contribute Advice from an Alzheimer’s Daughter to their blog. I hope you’ll enjoy the article and find some of the tips useful.
Until next time….
Last week, we held a special 1-night only screening of The Genius of Marian here in Columbus.
This film is absolutely brilliant in both its simplicity and its layers of complexity. Banker White told his family’s story masterfully in this documentary that follows his spirited mother’s journey from shortly after her Alzheimer’s diagnosis through the ensuing years.
During the course of the movie, we see a decline that no doubt mirrors the decline many of us have witnessed in our own loved ones. In a particularly moving scene, Pam White struggles to put on her coat before finally giving up. Such a simple, yet impossible task. This is the face of Alzheimer’s.
Pam was just 61-years-old when she was diagnosed. A beautiful woman who had it all – the antithesis of the stereotypical person living with dementia. The Genius of Marian puts forth such a critical message: Alzheimer’s is not just a disease of the elderly. No. It’s striking youthful, vibrant individuals in the prime of life and something must be done to stop it.
If you’re interested in bringing The Genius of Marian to a theater in your town, visit http://www.tugg.com/titles/the-genius-of-marian for details. The process is easy and serves as a wonderful way to raise awareness while earning money for an Alzheimer’s organization of your choosing.
The film will also be shown on PBS in September (http://www.pbs.org/pov/geniusofmarian/), and the DVD, due out in November, is available for pre-order now (http://geniusofmarian.portmerch.com/stores/product.php?productid=19086&cat=0&page=1&featured).
Watching Pam’s journey will make you laugh and cry. This is a woman who never lost her indomitable spirit or sense of humor. Much like my own mother, a woman of great strength, and while Alzheimer’s does its best to steal everything from these women, they fight like hell, never completely losing the core of their being.
One of the greatest gifts my mom gave me in this lifetime was having her advance directives in order long before Alzheimer’s was so much as a blip on our radar. I remember when she had them done. At that point, I thought, “Okay, that’s done, but I really don’t want to think about. Furthermore, it’ll be forever until I HAVE to think about it.”
And life goes on….
Then one day, in a complete twist of what you believed to be fate, life changes drastically and forever.
Even with the documents in place and my mom’s wishes crystal clear, the end was agonizing. No one can prepare you for those final days and the sense of helplessness you’ll feel. However, I can’t begin to imagine how exponentially more difficult it would have been if the medical team had been looking to me to make those decisions no one ever wants to be faced with.
Please take a few moments to read this important, thought-provoking piece by my friend, author Elaine Mansfield.
Elaine’s article has me rethinking my own Living Will and considering adding more detail as she and her husband, Vic, did. This specificity leaves no room for interpretation, and the fact that it’s handwritten also adds a certain level of comfort. It’s one thing to see a typewritten document initialed and signed by your loved one, but seeing these details written in their own hand – I think it might help the mind and heart to reconcile, finding a place of certainty and peace.
If nothing else, I hope this article will encourage you to give some thought to advance directives – particularly if you don’t have anything in place. Don’t leave these decisions to your loved ones; when the time comes, they will be struggling enough without having this additional weight on their shoulders.
Elaine Mansfield’s book, Leaning into Love: A Spiritual Journey through Grief will be on shelves in October. It’s one you’ll definitely want to add to your reading list. You can find Elaine on Facebook and Twitter, and of course, you can visit her blog to experience more of her beautiful writing.