"I’m So Sorry" and Other Things to Say in the Face of Alzheimer’s
My beloved Walk to End Alzheimer's annual event took place a few weeks ago. After putting in my steps with my family, I did as any other millennial lady may do, I checked my social media.
Amidst the stories of restaurant food, family and job updates, and hilarious Tiktok videos, I discovered a friend of a friend had posted about the Walk — my walk!
This was definitely one of those worlds colliding types of moments that I've written about before. I do not know her through my Alzheimer's advocacy, nor has she participated in any fundraisers or advocacy events with me. Seeing her in a sea of purple, I had to ask, "How did you find the Walk?"
She found it exciting and emotional because her Dad was recently diagnosed with Alzheimer's disease.
First, a moment to recover
I don't know about you guys, but I get this sinking feeling in the pit of my stomach when someone lets me know that their loved one is about to walk this path.
It may be classified as temporary mourning or just a knowing of what is to come before I'm able to recover. Then, I can be the thoughtful font of information I know I can be.
Second, get the key points across
I've been doing this, and by this, I mean sharing my experience with Alzheimer's, long enough that I have three key points to get across that are of the utmost importance:
- You don't have to do it alone. The Alzheimer's Association has a 1-800 number staffed 24/7 and support groups in several hundred communities across the United States.
- Find the right information. If they are local to Philadelphia, I mention that the Penn Memory Center is run by doctors at the forefront of this disease. I make sure to mention that because innovation is constantly happening within this space, it's important to ensure you have the right healthcare support.
- Even if you don't need help, connect. Whatever you do next, this is a disease for which there is no cure and limited means to treat it.
In order to thrive in the journey, the community you build around yourself will be key.
Finally, I'm here
I can't answer calls from everyone. I won't often have the answers to what to do next.
Many of the next steps in Alzheimer's care are personal: We make the decisions you can live with. But I've been down this road before; I understand the frustration when no one else is willing to help you, the helplessness of feeling like this is what your whole life has come to, and the fear of thinking your brain may betray you one day.
I can lend a non-judging ear to you. I can hear your story, and I can try to share that story in whatever forum is available to me.
It doesn't feel like nearly enough, yet it's everything I have to offer.
And then I end with: "I'm sorry this is happening to you."
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