⚡️SHARING IMPACTFUL ALZ LESSONS LEARNED (a 3 minute read)⚡️
Begin forwarded messages:
I sent an old boss and friend I hadn’t communicated with for 20+ years, the following message in a note ⤵️
Hi....I hope all is well with you and yours.
I’ve been texting Chicago friends and forwarding the contents of this note attempting to help others deal with ALZ after clearing its contents with the doctor who has been running FDA trials my wife has been participating in since 2013 when she was diagnosed.
We are incredibly lucky to have a man of our ALZ doctor’s caliber help us on my wife and my uncharted and challenging journey. Drawing upon his wisdom and 25+ years of experience has proven beyond invaluable. From him, I have learned I must attempt to choose the least stressful alternative whenever a short term choice needs to be made because stress irreversibly kills brain cells. It’s the prudent thing to do. And I will not deviate. Ever.
BOTTOM LINE, I try to change the topic when I notice my wife getting upset, tense, or increasingly confused.
Please pass this note about ALZ on. If I had the advice found below when my wife was diagnosed with ALZ 5+ years ago, our lives would have been much easier. But I didn’t. And I was unaware of these key lessons learned by other care partners before me and shared below.
My wife’s ALZ doctor suggested I send this note to a very select group of people so they will understand how someone with ALZ thinks and a few other critical facts. At average reading speeds, it should take about 3 minutes to finish.
My wife is my life and all I want is for her is to enjoy hers as best she can with ALZ. I learned some very helpful facts during our last appointment with our ALZ doc, an ALZ FDA savant. I want to share some lessons learned with you now.
My wife is a private person. At our ALZ doctor’s suggestion, I will only share things about my wife’s ALZ when I strongly feel specific people need to know specific things to protect her and/or make her life easier. Please honor her wish to be private. It will stress her if you don’t.
My wife and my goal is to do everything we can and want to do and ENJOY life the best we can each and every day.
She has ALZ. It is what it is. To live our lives as normally as possible, it’s essential we make you aware of a few things about ALZ. Some critical factors that impact the thought process of people with ALZ follow:
If I could only share one thing our ALZ doc told us during our 45 minute face-to-face it would be: The more people that are showing my wife love the more it’s going to help her as long as it doesn’t introduce stress in any capacity. He reiterated that negative emotions and confusion cause stress. Please try to change the topic if you notice my wife getting upset, tense, or increasingly confused.
Fundamentally, there are a few other things it is essential for you to know.
1) There always has been/will be a high probability of conflict and stress when those with ALZ feel disrespected for ANY reason including being interrupted or feeling talked down to.
2) When anybody with ALZ becomes upset, their ability to remember and reason temporarily declines more. In itself, that’s stressful.
3) My wife doesn’t like to be reminded she has ALZ despite the fact she occasionally tells people she has it. Hard to understand but a fact. It stresses her.
4) When anyone is tired or not feeling well, their ability to function and reason also temporarily worsens.
When something comes up that stresses a loved one, try to change the topic. ? FULL STOP ? Choose the less stressful alternative action.
Said another way, whenever there is an alternative or topic that will cause additional stress, you simply don’t talk about it or do it.
I would greatly appreciate your passing these thoughts on to friends and colleagues who will benefit from having the lessons learned and shared above.
Warm regards,
Ev
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