Last night, I learned that a friend, dear to my heart & part of my soul, had just been diagnosed with Alzheimer's. John & I had spent a good - in every way - portion of the day with him & he seemed especially tender & just slightly quieter than usual, so hearing the news was more stirring than if we'd last seen him this past Sunday.
For the first time, I personally experienced the advantage of doing what I do. It was around 9:00 p.m. when I heard the news. Immediately, I was rummaging through my bookshelf for a book I bought over a year ago but hadn't read yet - Lisa Snyder's Living Your Best With Early-Stage Alzheimer's.
There it was, waiting for me. Last night, its pages were pristine; this morning, its corners are turned down, notations are jotted in margins - it was devoured.
Lisa Snyder, MSW LCWS
So much for going to bed early. Still, I slept the better for having read it.
First off, it confirmed what I already knew - my dear friend & his family are already approaching the situation in a best practices style. Everyone has been remarkably upfront & candid about what's clearly been happening.
Sadly, so many families - maybe most - struggle with this. Some have no choice, sometimes not being direct does seem the best way to handle it with certain people, but I can't imagine the stress & added heartbreak.
Praise be, my friends' approach modeled health. If I know my dear friend & his children, they've already been surfing the internet for information. For myself, this morning was the first time I've done a targeted search for information on early-stage Alzheimer's (ESA). It was more than informative - it was encouraging. Of course, I was coming at it with the foundation of having read Lisa Snyder's remarkably readable book. Last night, I felt knocked for a loop, but by this morning my feet felt on firmer ground.
If I had the money, I'd keep extra copies of Living Your Best... on hand to give friends experiencing early-stage Alzheimer's, either directly or in a support role. It's that good.
The book had me at Principles for a Dignified Diagnosis. Felt reassured, recognizing in it what I'd just experienced with our dear friend. High fives & loud cheers to him & his family! And my apologies to Lisa if I totally plunder what she wrote, but it is too spot-on not to share!
The Alzheimer's Association held a series of nationwide townhall meetings with people & families facing early-stage Alzheimer's, from which evolved core Principles for a Dignified Diagnosis. It reads as if it was written by our dear friend to his doctors, family, friends & care partners:
- Talk to me directly, the person with dementia.
- Tell the truth.
- Test early.
- Take my concerns seriously, regardless of my age.
- Deliver the news in plain but sensitive language.
- Coordinate with other care providers.
- Explain the purpose of different tests & what you hope to learn.
- Give me tools for living with this disease.
- Work with me on a plan for healthy living.
- Recognize that I am an individual & the way I experience the disease is unique.
- Alzheimer's is a journey, not a destination.
Alzheimer's is a journey, not a destination. Helen Keller, who knew a thing or two about making the most of the hand you're dealt, put it so well - it is a bend in the road, not the end of the road. l feel honored that John & I get to be with our dear friend, forever part of our heart, helping make the turns. Far down the road, he might not always know who we are, but he'll always know how much we love him.
A few - out of countless - links on early stage Alzheimer's. I'll be including more in future posts. If you have any to recommend, I'd love hearing about them. Thank you!
http://www.geri.duke.edu/service/dfsp/newly-diagnosed-suggested-reading.pdf
http://www.alz.org/norcal/documents/06-2011_EarlyStage_HelpandHopeHandbook.pdf
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