Gut Punched: EP 117 - What Do Hurricanes & Caregivers Have in Common?

What could hurricanes possibly have in common with Alzheimer’s caregiving?

More than you might think.

In Episode 117 of GutPunched: Alzheimer’s & Caregivers, Jeff Edwards takes a timely look at the surprising parallels between preparing for a hurricane and navigating the unpredictable world of Alzheimer’s caregiving.

Hurricanes can change direction. They can intensify with little warning. They require preparation, patience, a good support system, and the understanding that some things are simply beyond our control.

For Alzheimer’s caregivers, every day can bring something different. There are good days, difficult days, unexpected changes, emergencies, exhaustion, and sometimes a feeling that you're facing the storm alone.

Just as we prepare for hurricane season before storms arrive, caregivers can prepare for difficult situations before they arise. That means having plans for medications, medical appointments, finances, respite care, and emergencies, and knowing who to call when you need help.

And later in the program, Dr. John Huffaker joins us for another edition of “What’s New with Alzheimer’s.”

This week’s listener question focuses on Leqembi: After experiencing ARIA while taking Leqembi, what options might be available moving forward?

Dr. Huffaker discusses ARIA — Amyloid-Related Imaging Abnormalities — 

Real Talk. Real Help. Real Hope.  Hope Without Hype.

#GutPunched #Alzheimers #AlzheimersCaregiver #Caregiving #CaregiverSupport #Dementia #DementiaCaregiver #HurricanePreparedness #CaregiverPreparedness #Leqembi #ARIA #AlzheimersResearch #WhatsNewWithAlzheimers #HopeWithoutHype #RealTalkRealHelpRealHope

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Navigating the insidious illness of Alzheimer’s is something nobody asks for. The disease sneaks up on you and your loved one, and it feels like you’ve been sucker-punched in the gut when you get the diagnosis from a doctor. So many things race through your mind: why us? What do we do? We worked so hard to get to this point in life. We just moved here after we both worked for 30 years, sold our house up North, and retired to Florida to enjoy our “golden years”. It’s not fair! Who’s going to take care of her/him? I don’t know a thing about this illness. She’s always done the cooking; I don’t even know how to boil water. He's always taken care of me and everything else, like Finances. I don’t even drive! And it goes on and on. Facing this disease will bring you to your knees. Once you get over the initial shock (GUT PUNCHED), the questions and fears take hold. Where do we turn for help? Who do I call? What do I do? How do you take care of someone with Alzheimer's? Are there support groups? And questions like these keep coming. I am a caregiver. I wasn’t before. Well, not this kind of caregiver. My wife was officially diagnosed in January of 2018. I had a sneaking suspicion that she might have something like this about 2 years earlier. So, when I brought it to my Neurologist, he sent us to a very nice Psychologist who specializes in testing patients to determine more accurately what is going on. It was a question-and-answer session, followed by a very detailed testing procedure that usually takes three or more hours. The patient must complete the test, which comprises questions, simple actions, and memory tests.

Then give them a couple of numbers or words, and move on, returning to the numbers or words a short time later. So, moving forward, I asked the same questions mentioned earlier. What are my options? So I “sucked it up”-Manned up, so to speak. It's part of the deal for better or worse, right? So began my quest for information on support groups, doctors, and anything I could get my hands on. It's been 6 years, and I am still looking for anything that will help me crawl along this uncharted path to enlightenment. I was very fortunate to live in a city with numerous resources to draw on.

Most importantly, it's a place named after someone who suffered from Alzheimer’s. His wife provided the money to start the Alvin Dubin Center: The Dubin Center for short. Their mission is to achieve caregiver health, strength, and resilience by providing education, information, hope, and compassion. And boy do they. I leaned on them for everything I could find. Took all kinds of classes to learn what I needed to do to be the caregiver I have to be. Their caregiver class took about 6 weeks. The material we learned from and the instructors were top-notch. I still go back to the notes I took and the books we used, both as a refresher and for inspiration. Hopefully, wherever you are listening to this, there will be a place like the Dubin Center. If not, don’t despair. The info is out there. That’s what this podcast is about. We want to share our resources, our experiences, our heartbreak, and our little victories. From time to time, we’d like to bring in Physicians, Nurses, Experts, and people like you and me who are going through this disease with our loved ones, willing to share their journeys. The first thing that really stuck with me, and hopefully it will be with you. If you are a caregiver, you must first take care of yourself. Because this is not a sprint, but a marathon, and if you are run down, get sick, or worse.... Who’s going to take care of your spouse, mother, father, or child? Think about that for a few seconds. It’s you, the Caregiver. It’s me, the Caregiver. That’s why we’re here. Gut Punched: Alzheimer’s & Caregivers! Thanks for joining us...now let's get going.