You’ve put years of your life on “pause” so that you can provide the care your loved one deserved during the worst years of their life. Then, all at once, it seems, what you’ve known would happen all along finally happens.
They’re gone.
Yet, when it comes time to hit the “play button” and get on with your life, you discover you’re not the same person you were. The all-encompassing caregiving experience has changed your life.
So, you may ask, what has changed?
In addition to knowing more about Alzheimer’s than I ever dreamed possible, I have a whole new skill set. I work with certified nursing assistants and am continually amazed at how much of what they have learned in their training I learned by necessity.
I’m much more assertive than I was prior to caring for my mom. I learned this by being an advocate for my mom and my brother with their physicians and healthcare insurance providers. I learned to speak up for what was right while making countless phone calls to people and organizations who were preying on mom and helping her spend her modest pension and Social Security income. My newly acquired boldness helped me to relentlessly insist upon a refund from the companies taking hundreds of dollars from her every month.
Another thing has changed too. My eyesight. My physical vision is changing due to a pair of cataracts, but the vision I’m talking about isn’t physical.
It’s an internal ability to see the caregivers around me more clearly than ever.
Not long ago, my hubby took me out for lunch. I saw the caregiving granddaughter sitting in the corner with her memory-challenged grandma. While others probably tuned it out, I heard her gently answering her grandma’s myriad questions — over and over again. I heard this precious granddaughter sharing and resharing the “news” of her pregnancy and the baby who would arrive in July – to the beautiful and heartrending delight of that baby’s great-grandma. I could see that granddaughter rewinding bits and pieces of her conversation: that she lived just down the block from her grandma, the names and ages of her children, what they were doing in school, and all of the details about which her grandmother was curious.
With caring for Momma behind me, and eyes that are now wide open to the world of dementia caregivers, it’s my heartfelt desire to press life’s “play button” again—this time purposefully engaging with and caring for the caregivers I encounter all around me.
I am a caregiving daughter forever changed by Alzheimer’s.
Barefoot Lily Lady 
Thank you for your story and insight. I too wonder what’s next. Cheryl, my wife of 53 years, does not have Alzheimer’s disease. She has Parkinson’s with the dementia component. The granddaughter is full of grace. I recognize as I am sure you do, how draining that can be. – repetition. Eventually some side effect – falling, choking, etc. to the disease will take her from me. I often ponder, perhaps even long for, what’s next. I try not to worry about it. It will come soon enough. Godpeed.
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You do well to try and not worry. Some days that is VERY hard. The last few months definitely were much more difficult. My one piece of advice for anyone coming near the end is to enlist hospice sooner than later. Even if you’re not sure Chery is not far enough along to qualify, it does not hurt to have her evaluated. If they find she is not quite ready, at least she is on their radar and they will likely come back at intervals to check. The sooner you get hospice on board and in your caregiving corner, the easier your journey alongside her will be. Take care, my fellow traveler. ~ Cindie
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