I was driving to work the other day when I saw something as rare as a Yeti with a receding hairline or a constructive political conversation on the internet: my little white Tempo One SS Sports Coupe turned 66666 miles. My first thought (after how can a car with only 66k miles be such a little poo pile) was the word YAHTZEE. In fact, I shouted Yahtzee, then I looked in the passenger seat and remembered that nobody was riding with me, then I quickly looked around in the cars pacing with me to see if anyone noticed me talking to myself (loudly) . Upon seeing my fragile dignity was still intact, I thought…”hmmmm Yahtzee… there’s our topic for today!” So, as I am wont to do, I will shoehorn this word into an acrostic on a topic I want to dead horse re-beat today. 😉
I get asked occasionally for ways to help beyond the critically-important, in-the-trenches helping individual caregivers with day-to-day life. Before I roll the dice and give you my answer, I want to remind you…please don’t stop helping your local people, your neighbor, your family (and your local area agency on aging). Home caregivers have a really, really hard 36-hour day life and need your help. But, let’s say you have already served them 100 hours this week 😉 and miraculously have more time available. What can you do to fix the hot mess this disease has wrought? Here are 7+ things you can do. Don’t take them all on at once…perhaps just like when eating an elephant, take them one bite at a time…
Yell, yodel or yelp loudly, along with other members of like-minded folks, to ask for more funding and for bigger visibility/more awareness. Your best bet in that realm is to join AIM, the Alzheimer’s Impact Movement. These advocates get in front of legislators and decision-makers and do a lot of good. I will be meeting with U.S. Representative Billy Long next week, as a matter of fact, to tell my mom’s story and to thank him for some great things he has done. This topic isn’t red nor blue…it is purple. We all have loved ones struggling and legislators will often put down their swords and join us. Missouri state legislators are also outstanding in helping. Advocacy in this way isn’t scary, nor is it stressful or intimidating. They are people just like us. There are other great advocacy movements online as well to which you can lend your yell, yodel or loud yelp. (The Women’s Alzheimer’s Movement; Molly’s Movement; Are you a little edgy? Try Hilarity for Charity. Find a microphone, take to social media, write to or visit your congressperson. Advocate. 🙂 There are lots of good options.
Attend a walk. The Walk to End Alzheimer’s happens in the fall each year in a large town near you. If there isn’t one, go to Alz.org and start one. These walks do a few things. They serve to show thousands of folks walking that they are not alone in the struggle. These events are the biggest yearly fundraiser, raising hundreds and hundreds of millions of dollars toward a cure. They also raise awareness so that fewer and fewer are caught off guard by this terrible disease.
Hashtag #EndALZ . If you are not a social media person, I get it… However, if you are one, like I am, add the #EndALZ and others to relevant posts about the topic so more know it is there. Some of the most popular hashtags are: #EndALZ #EndAlzheimers #Walk2EndAlz #AlzAssociation #GoPurple #Dementia Just a note to the non-techies among us: a hashtag is just the pound/number sign followed with no spaces by the searchable keyword. Don’t use spaces or punctuation. Then, anyone who searches for the keyword hashtag, they can and will find you. It is a way to increase visibility. It can go anywhere inside of the post or even completely after it. Holler if you have questions. 🙂
TV or other media. June is Brain Health Awareness Month and the current month is Alzheimer’s Awareness Month. During these months in particular, but also during big events like the Walk to End Alzheimer’s and the Longest Day, your local media is especially interested. Check in with TV and radio in your area and see if they need someone to talk to. Yesterday I did an hour radio show (will be posted soon) and a 30-minute TV interview. Pretty soon they will be calling you for your take on different subjects. Disclaimer: I am NOT a public speaker and I have a “radio face” as you can tell by the TV clips. However, it isn’t scary in most cases and can really encourage people…and yourself. They record lots and lots and edit it down. If you botch something, it will likely get cut anyway. I won’t do live interviews because I don’t want to say anything odd, but that is just me. The radio is live, but it is more casual and you can, for the most part, retrace your steps if you say something you didn’t mean.
Zippy or Zeal. Be winsome. Wear Alzheimer’s gear. I get asked fairly often about Alzheimer’s just by wearing a shirt or my wristband here and there. You know, everyone has heard of dementia…but most people are confused by it. It is NOT just an old person thing. It is not contagious. It is not a normal part of aging. It is not inevitable…you can do things to fight it off. Learn more and more and clear the fog. When people truly understand these and other things, they want to help! Wear purple in advocacy months. Perhaps, see if you can raise money at work with a dress-down in purple coupon that employees can buy. Work for a huge company and think they are too busy? Think again!! Thank you CVS!!!! Thank You Edward Jones! There are lots more like-minded companies too!!! Thank you thank you thank you!!!! Our zippy zeal feeds the fire. 🙂
Enter clinical trials. The Alzheimer’s Association has a program called Trial Match in which volunteers are matched to clinical trials that fit their case. Think Match.com, but instead of awkward blind-ish dates and scary first kisses, you get to enjoy surveys, blood tests and an occasional spinal tap opportunity. Honestly, I would much more like to help mom with 36 spinal taps than go back into the dating world, but I digress. There are literally thousands of trials going on at research hospitals and universities everywhere. Near me, Washington University (St. Louis) has many, many projects going. Most are non evasive, many cover your medical costs, and there is something for everyone.
Entertainment. The Alzheimer’s Association’s second biggest fundraiser is a somewhat self-directed program is called The Longest Day. It is held in June and it corresponds with the longest day of the year, reminding revelers that there are millions of people living as 24/7/365 caregivers. The idea is to host an event, a party, a run, a poker night, a trivia night, a whatever night…and donate the proceeds to help fight this disease. What could be more fun than having a entertaining evening and helping in the process??? The Assocation will even help you organize and market your event. Give it a whirl! 🙂
Update: Mom had another great day yesterday. The doctors are almost surprised things are going so well. 🙂 She is happy and things are still far better than they were a couple months ago. I know things are still progressing in the wrong way medically, but I will shout a hearty Yahtzee for the good times we have right now! 😉
#EndALZ #EndAlzheimers #Walk2EndAlz #AlzAssociation #GoPurple #Dementia