For where your treasure is, there your heart will be also. –Matthew 6:21 (Note for those new to my blog: I pick a Bible verse every blog post that corresponds to the day of the year. Today is 6/21, so I looked through all of the 6/21s of the Bible and enjoyed this one. In “real life”, I always recommend reading line-by-line, in context as opposed to randomly pulling out fortune cookies like this, but maybe this way will remind you and me, in some small way, of how diversely amazing this book is. 🙂 )
Hi all! Happy Monday! I hope you had a fun, life-giving, and temperature-controlled weekend! In order to keep myself in the right frame of mind during my run Saturday, I kept the weather app on my phone pointed to Death Valley, California. It was in the mid- to upper-120s there! It was 100 at 2am most nights…”But, blog boy, it is a dry heat”, you may be saying. My response: “A microwave and an air fryer produce dry heat too, but I sure as shootin’ don’t wanna sit in there either.”
Here are some takeaways from my Runnin’ Til I’m Purple event from Saturday, in a Top 10 format like I am wont to employ. 🙂
Top Ten Things I Learned from Runnin’ Til I’m Purple
- The Frisco Highline Trail is long. Dementia is longer.- This is my final map/by the numbers illustration:
The total was a little over 38 miles. I started on the other side of Highway 32 in Bolivar and ran/walk/slogged to just west of the corner of West Bypass and Kearney in Springfield. There were fast parts, there were slow parts, and there were pit stops. Note in the first 12 miles’ times listed above, mile 6 took 20 minutes…but I had a 6-7 minute pit stop to swap hydration backpacks and to discuss dementia a little. I tried hard to run faster while it was cool, and I paid for it in the end… Later I took longer breaks. I had to walk waaaay more than I expected. It was long. Dementia, too, has been called “The Long Goodbye”. You say goodbye to the original person, slowly but surely until you have to say goodbye again when they are gone. It is a double mourning that is hard to explain and hard to come top terms with. Some make it a few years, others a decade or more. Mom has had it since 2009. Regardless of the chronological number, it is long…
- If you aren’t willing to stop, you miss things– At one point in the run, I noticed some very happy cows all but splashing in a pond. They seemed to be having fun…in a cow format. I saw a few bunnies, a dozen or more lizards sunnin’ their buns, and several beautiful flowers and other amazing living things. I knew I had a long way to go, but I also know that my mom would have stopped and checked them out….so I did too, and was better for it. When you are hanging out with a loved one with dementia, look. Stay in the moment. (Cliché alert:) Focus NOT on what is worse/what is lost, but what is there. Mom grinned a small grin for me a few weeks ago at my last visit. The rest of the time she sat in her chair with her eyes closed and her arms drawn in. In my favorite video of all time, mom was playing Blessed Assurance on the piano. She had fallen and had a huge knot on her head. She was barely verbal even in those days, but would still sing the old hymns…and draw a crowd at the memory unit with several doing the same. When I moved my phone to the other side, she held up an OK sign while she played. I really feel like this was and is her way of telling me that, no matter what happens, things will be ok. We can’t get lost at the big stuff and miss the small things… Here are a few pictures from this run that reflect this theme…and a frog from a previous run on the trail that I needed to include:
- Don’t miss the forest for the trees… nor the flower for the thorns– Dementia is hard to look at, especially if you know the person well. It is uncomfortable. It is sad…overwhelmingly so. But don’t let it stop you from seeing the wonderful person that is still there. You will get used to it if you try…and you will grow in your love for the person as you look harder. This flower from the trail made me think of that:
- Sometimes the little things get missed– I have a high tolerance for pain. My wife does too as evidenced by the fact that she keeps me around after 30 years of marriage. 🙂 I had a couple of small rocks in my shoe for miles Saturday…probably 5 or 6 miles…and ignored them. My foot was annoyed and I probably didn’t treat the situation correctly and should have stopped and shook out my shoes sooner. Once I did, I felt much better. In dementia, the poor soul often can’t tell you what is wrong when something hurts or is irritated. This can range from a minor inconvenience like a rock in a shoe (or a corn on a foot like mom had here and there) to a UTI to much worse. When something seems off more than normal, try hard to search out the pebble in the shoe. They will feel better…and so will you.
- Eating elephants or running trails– How do you eat an elephant? One bite at a time. How do you traverse the Frisco Highline Trial? One step at a time. Every step was one step closer. Keep moving forward. Keep marching on. Every step counts.
- Self-care in life is more important than we realize– Scroll up again and look at the map with my hourly running times listed to the left. My normal pace is 15-16 minutes per mile. I try to be very consistent in that because I know what treats my body well and what doesn’t. As a boneheaded, semi-caveman man, though, I was watching the temps and thought that it was super important that I crank out as many miles as I could before noon when it got hotter. I am bulletproof, you know?! Well, by the time I got to about mile 14 or 15 (just off the list shown on the map picture above), I was struggling. I ran for a few miles with my friend Charlie, then had to walk a significant amount. I had to do the same with my friend Stacey who joined along at Walnut Grove. If I would have paid attention more to overexertion, I would have been faster and would have ran much more and walked much less. Such is the same in self-care when you have a loved one with an illness, especially dementia. If you want to be the best you can be, you have to take care of yourself too. You know the drill on the plane…the parent gets the oxygen first, then they can help the children do the same. You are not being selfish by doing so, you are making yourself a stronger, more powerful caregiver. Get help where you need it and take care. My friend Shirley was a great example… Shirley’s husband came down with a terminal disease, then another one (dementia). Shirley was an amazing caregiver…amazing! She stood by him 24/7 more multiple years helping him in some of the hardest things imaginable. In the end, unfortunately, he succumbed to this diseases. Shirley, especially soon after losing her husband, became ill and finally went to the doctor. Unfortunately she also had a terminal disease, likely made worse due to lovingly caring so diligently for her hubby. It was such a tragic ending for both of these sweet souls… Bottom line: take care of yourself and get help/care from family and friends.
- Doing big things typically requires a team– I do very little right now by myself at SeniorAge. I support people doing big things, I find solutions, I work very hard…but I am not often the primary, and am seldom the only, doer. My little department is a team and all of SeniorAge is a team…and we rise and fall as a team. I did next to nothing by myself on the Frisco. It takes a team. It took a team for me to succeed in navigating the trail. I have multiple friends who are runners…real runners…who gave me countless tips, tricks and nuggets of advice. My Weight Watchers director helped me lose weight through encouragement, kudos, tough love, and friendship. My amazing (!!!) family met me 5 times with a new hydration backpack, food, a couple minutes of AC in the front seat of the van, and loads of encouragement! (I went through 13 liters of water, plus some sports drinks) Two friends, Charlie and Stacey, each ran/walked next to me for a decent portion…a total of 16-17 miles between them! Every one of you were super encouraging in the day-to-day postings and mentions at work and online. (I am certain you had heard enough of my asking for $$$). The donors to the fundraiser were super encouraging through their giving. Did you know that as much as we need each other as a team at work and in running long distances, it is even more vital at caregiving? Don’t go it alone!!! Find help. Accept help. In dementia care, learn two very important organizations: The Alzheimer’s Association and your local Area Agency on Aging (SeniorAge). The burnout rate is high among lone rangers (it is high even with help…I can’t imagine doing it alone!) We need each other. Find and build a team and go to war against the disease, arm-in-arm.
- Routine is soooo important– Is anyone else here a creature of habit? I am, to a fault. I realize that we all embrace change, but we also crave sameness. I get it. This routine thing is a big part of how I did the run. Since January have slobbed out of bed in the wee hours of the morning and headed to Planet Fitness. Once there I ran 2 hours on the dreadmill, trying desperately to make long distances routine, then showered and headed to work. I was able to make 2 hours pretty routine. The trail, however, was much longer. Enter Saturday routines: Nearly every Saturday the last 3 months I have completed a long run to try to make them routine too. The following are my long run mile distances, in order, since Jan 14th: 4, 6.03, 4.03, 7, 10.77, 12.11, 15.55, 17.01, 18.44, 20.16, 22.14, 22.02, 25.01, 13.10, 20.01, 3.83 in the rain, 21.43, 31.03, 13.13…then run day 38.4. The routine of running long days helped a bunch. I was mentally and generally dad-bod physically ready. What I wasn’t ready for, though, is something that eluded my routine: running in the heat. Only one run in the above list was over 80 degrees…it has been beautiful this spring. The heat kicked my dad-bod butt. Dementia patients crave routine even more than we do, and that says a lot! They are struggling to process things and the less they have to process, the better. Routine allows for auto-pilot mode and a more rested brain. Think of driving, for a basic example: I drive the same route nearly every day. I blink my eyes and I am at work. There are very choices required…I just do it. Dementia would be putting me in a 4-speed car (I know, I know…I need to learn to drive a standard!!! Get off me!), plopped down in the middle of Tokyo, and told I have to drive to a toenail clinic across town and ask for antibiotics in a language that I am rapidly forgetting or don’t know. No mental rest. Anxiety. A little paranoia. (Who is he looking at??? Am I driving the wrong direction on this road???). Therefore, find ways to integrate routine. Set alarms at the same time. Only leave the house during certain, prescribed times. Don’t move things (unless for safety). Help your loved one find solace in the familiar. They need it.
- Find Your Why– Simon Sinek should be on your playlist if you are not already familiar with him. He labors in many YouTube/Tedx Talk videos about “why”. Why do we do what we do and how does this question motivate us. I have gleaned a lot from this speaker’s wisdom and have spent quite a while pondering it. I have also been asked why I would pick the 2nd longest day of the year and run a crazy long trail. It is simple. I hate dementia. I hate it. I hate that it took my grandma. Grandma Gladys was a wonderful lady! My grandpa would bring home new cars from his car lot for her to drive. She would drive us to school in these new cars and, often, not being used to the car, grandma would burn rubber trying to get onto the highway,,,and we loved every second! Grandma is Daisy Duke with doubleknit!!! And she would belly laugh! I hate that dementia took nearly all of the Sweet 17 that I write about in my blog. I hate that it is slowly taking my Uncle Joe. Uncle Joe is a simple guy…one of the nicest men you will ever meet! He loves his family, sometimes innocently awkwardly so. (Example: If I saw him at WalMart, he would holler across the whole store “Hey, there is my nephew Mark!!!”) He is wonderful…and dementia will likely kill him with a couple of years max. Oh, and mom. Yup…mom was doing just peach in 2008/9. She would swing by and babysit my kids while mowing my yard and weeding my flowered areas all while my wife and I would sneak out for a weekend break…and would love every minute of it. She has an infectious laugh/sense of humor, she was a loving and wonderful person to know (and to have as a mom), she was a great neighbor, she was an advocate a million times better than me. She is mom, and I hate what this disease has done to her. Part of my why is also for myself and for my kids. The disease isn’t hereditary, as such, (although one rare form is hereditary). However, it does seem that my family has a propensity to get it more than the norm. Therefore, I worry about my kids and, to a limited extent, myself in so much as I would be a terrible patient. (That sound is my wife loudly agreeing. 🙂 ) That is my why. I do not like publicity. I don’t like the spotlight in any form… I am the dude against the wall in the high school dance. I am the guy who takes the pictures, not the one of whom they are taken…but I hate this disease more. My thinking was/is: What can I do that is big that could generate some awareness and raise some funds? I lost some weight and live near the trail. Why not “jump a shark”, ala Fonzie? Runnin’ Til I’m Purple is jumping a shark.
- The futility of re-winning old battles– I acknowledge that the show’s values weren’t ideal (cough), but I used to love “Married with Children”. Al Bundy is my spirit animal…I admit it. I know, I am not as far in the Christian life as I should be…I get it. 😉 Al, a world class shoe salesman, would brag incessantly that he once scored 4 touchdowns in a single high school football game back in 1966. (See this for proof). When you are in a mountaintop experience, or in a valley for that matter, it is ok to celebrate, or mourn, as appropriate, for a season, but we have to eventually move on. When it is something big, it will remain a part of us for life, but we still have to live in the now and keep our Why in view. I bring this up because I have lost weight before. I have had victories before. I have had complements for my weight loss before…then gained it back with interest. I need to stay on track and not rely on past success for future results. This is the time for me to remember this reality, not after I have gained it back again and stopped running. My thinking, to keep myself on track and because of the need of a cure, generated this video this morning as I got up at 3am to start training again:
That is the sound of a terrible rendition of angel sounds as I opened a brand new shoe box to begin training in September (after the Walk to End Alzheimer’s ceremony is finished) for “Runnin’ Til I’m Purple II”. 🙂 This time I want it to be a relay of some sorts, still in June for the Longest Day, with a bunch of us involved. I will run the whole way and I will garner as many volunteers from SeniorAge/Alzheimer’s Association staff and friends as are willing to pass a baton to run the trail with me. If you can walk/jog/wheel 50 feet, 500 yards, or 5k, you have a place in the relay. What do you think? You interested in turnin’ purple with me next June? 🙂 Details will come out in more detail on October 1st.
Thank you sooooo much for all of your support, your encouragement, your posts, your donations, and your friendship. It was fun. It was hard. It was kinda stupid….but if we get a cure 30 seconds faster, it was worth every step. There are far too many people who helped to call out every name, but thank you one and thank you all!
Suffice it to say, “We did it!”
If you get a chance, go to Facebook and search the hashtag #TheLongestDay and check my profile. I posted a several videos throughout the run. 🙂