1. Upd8

    Upd8 New member

    Aug 22, 2019
    1
    #1 Upd8, Aug 22, 2019
    Last edited: Aug 22, 2019
    I would greatly appreciate your passing these thoughts on to friends and colleagues who will benefit from having the lessons learned as my wife’s care partner since 2013 and shared below:

    At her ALZ doctor’s suggestion, I’ve sent a note like this, without her knowledge, to a VERY limited group of people who interact with my wife to help them help us minimize stressful situations. At average reading speeds, it should take about 2 minutes to finish.

    Please don’t let her know about this note and honor her wish to be private. It will stress her if you don’t.

    My wife was diagnosed with ALZ in 2013. 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. Our goal is to do everything we can and want to do and ENJOY life the best we can each and every day.
    Full STOP

    If I could only share one thing our ALZ doc told us during our recorded 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 which irreversibly kills brain cells. Please try to change the topic if you notice my wife getting upset, tense, or increasingly confused.

    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.

    BOTTOM LINE: I try changing topics when I sense my wife getting upset, tense, or confused. I’m hopeful others in her life take the same approach.

    If I had the advice found below when she 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 first hand or by other care partners before me and shared below.

    Lesson 1: 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.

    Lesson 2: I’ve learned it’s not what you say - it is how you say it, what is heard, when it’s heard and what other factors are effecting us at that specific time.

    Lesson 3: Don't interrupt - there always has been/will be a high probability of conflict and stress when those with ALZ feel disrespected for ANY reason including being rudely interrupted or feeling talked down to.

    Also, the odds are that saying “should” to someone with dementia will more than likely be taken as an insult.

    Lesson 4: When anybody with ALZ becomes upset, their ability to remember and reason temporarily declines more. In itself, that’s stressful for everyone.

    Lesson 5: When anyone is tired or not feeling well, their ability to function and reason temporarily worsens.

    In summary, when something comes up that stresses someone with dementia, try to change the topic. FULL STOP Never forget that stress irreversibly kills brain cells and always 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
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,336
    Kent

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