The path of the righteous is like the morning sun,
shining ever brighter till the full light of day.
19 But the way of the wicked is like deep darkness;
they do not know what makes them stumble. Proverbs 4:18-19
On the tenth day of the first month the people went up from the Jordan and camped at Gilgal on the eastern border of Jericho. –Joshua 4:19, but you really need to read all of Joshua. It is waaaaay more than some folks circling a wall and shouting at it.
Happy Monday to all. 🙂 But, really, aren’t all Mondays happy? (I am trying to tell myself this enough that it take hold in my weak brain…)
It was a good weekend for me. I had a nice work party Friday, then Saturday I got in an over 22 mile run in preparing for my “Runnin’ Til I’m Purple” fundraiser in June. (Note: we topped the $2000 mark in combined donations and are nearing the halfway point of the goal of $5280! Woot woot!!! T-Shirt pre-orders are still coming in. Here is that link. I haven’t heard how many Blue Iguana car washes have happened using 1735 as the wash code getting the fundraiser 25% of the proceeds, but I am hoping for some sunny days to wash cars soon… I am still trying to work out a computer clean-out day… We’ll get to the goal. Thank you to all who have donated and who pray for and support me in this endeavor.).
While I was running, I was (shocker) thinking a little about dementia to get my mind off of being pooped. I listened, as I huffed and puffed, to an outstanding audiobook by Lisa Genova, the writer of Still Alice, called Remember. The subtitle of this book was THE SCIENCE OF MEMORY AND THE ART OF FORGETTING, and it tells you volumes about what you will soon read. It was scientific enough without breaking your brain but compassionate and thoughtful enough to keep you engaged. I highly commend the book to you. The book, the run, the fundraiser, and the rest made me wonder “What can be learned about dementia (not my state of mental health) from my goofy little run?” This is what I came up with at first pass:
- Contact/rubbing, over and over, causes issues– I should know better. I have ran one 5k and one marathon (over 10 years ago before stopping running and gaining a full teenager worth of weight), super slow, with friends, and barely finished). When you run long distances, even at a slightly slimmer 240+ pounds, things rub against things. Body parts rub body parts, clothes rub body parts, and the like. If you have ever watch the end of a marathon, you know the spots by the blood present. There are ways to help prevent this. I use a wax-based lubricant and it seems to keep me from this issue, but on a cold or wet day these sometimes fail. Then blood happens. In dementia, bed sores are a huge problem. This is a huge problem for those confined by illness to a bed. According to an article in Agingcare.com, this is an enormous issue, stating “According to the National Pressure Injury Advisory Panel (NPIAP), approximately 2.5 million patients develop pressure ulcers each year and 60,000 die as a direct result of these injuries.” End-stage dementia typically features mostly being in bed or a wheelchair, and these bedsores are extremely common. Add in the infection caused by poor hygiene care by understaffed facilities and you see why infection is a major cause of death in dementia. Here are a couple articles to further your study on this problem, starting with one from yours truly: Link Link Link Link Link Link
- One pebble in the shoe– I weigh around 250ish. I find out tonight in my Weight Watcher’s (WW) meeting. A pebble the size of a stinking Rice Krispy weighs, what, an ounce or less? Yet, when it is placed in your shoe and you push on it with multiple times your foot might as well get hit with a roofing hammer. Partially building on #10 and partially not, two things here come to mind. Pressure sores from laying in the same bed/sitting in the same chair for hours/days…be sure contact areas are clean and smooth. Failure here causes pain (that may manifest itself in acting out or other behaviors) and can lead to sores and potentially deadly infection. Think smooth…… The second thing I think about here is the OCD nature of caregiving, especially in early stages. You will be asked the same questions a dozen times before you have your first McCafe coffee of the day. At first you can cope and you will be strong. This patience will likely wane. Other activities such as pacing, fidgeting, carrying/hiding things, and the like will wear you down if you let it. PLEASE, for your sake and for the sake of your loved one, prepare now. Have a care team. Plan respite breaks with friends/family/church family/etc… If you need help, visit alz.org or call the helpline at 1-800-272-3900. Also, check in with your local Area Agency on Aging for the many ways they can assist. My employer, SeniorAge, is the non-profit “AAA” for our counties in Missouri and is the half beneficiary of my fundraiser for this reason, and 100000 more…
- Anxiously preparing– Wanna run a 5k? You need to prepare. It is, after all, over 3 miles and is challenging, especially for the unprepared. How does a 10K sound? You’d better prepare more. Run more. Work out more. This is 6+ miles and can wear you out toot sweet. Wanna run a marathon? First, you should check with your primary healthcare physician (and probably a mental health professional) before starting this…and plan on preparing relentlessly for months. In my opinion, 26+ miles should be travelled by 4-wheel machine or, in a pinch, on a carrot-eating animal, but not on foot. Wanna run 37.6 miles or so (around the combined distance of a 5k, a 10k, and a marathon, stacked like the pancakes I love to eat so…), you will be running a lot. I run, on a typical week, 3x 8-10 mile dreadmill runs and a long one on Saturday or Sunday after church. By a long one, so far, I mean 20+. Therefore I am getting in 44-50 miles a week. Why am I obsessing? I am still a chubby mess. I am still getting prepared and I don’t want to let anyone down by failing in this shark jump….and I am not thrilled about the prospects of dying mid-run either although heaven sure sounds great. In Dementia, preparing is also a facet of early- to mid-stages. Preparing, not to run like a purple doofus (Hi, I am Mark), but preparing to either lose things or to be embarrassed, both tragic and anxiety-inducing. Therefore the loved one may hide things so they won’t lose them. They may gather them in a bag or box and guard said bag/box with their life. They may then lose said hidey-holes and, not wanting to admit they forgot, blame you for stealing it/selling it/burning it/giving it away/moving it. Prepare for this kind of preparation by your loved one. I can’t say everyone with dementia get this (or practically any symptom), but it is quite common and can cause you a mess.
- Pastures, Potholes, and Priuses cause more problems than the actual run– Have you ever noticed, in life, that what you expect will cause you problems are often no biggie but you get side-swiped by other things? For instance, I thought growing up that “stop, drop, and roll” was going to be a facet of daily life and that quicksand was everywhere! I knew, beyond a shadow of a doubt, that Global Cooling (a.k.a. the next Ice Age) and/or Acid Rain meant my world was going to freeze into a giant, acidic Slurpee. Stop, Drop, and Roll aside, it was much ado about nothing. Now that I started running, I figured I may pull a muscle, have a heart attack, or just fail. My bigger issues have been pastures, potholes, and Priuses. Potholes: twice now I have been charged by bulls who didn’t think kindly of my running down the street next to the pasture east of my town. Potholes, eventually, may yet get me. Lots of ice and snow and mediocre roads have left a few of my routes pothole-ridden. Some I fear falling into, but the bigger fear is twisting a knee or ankle. Last, Priuses seem to have a vendetta against me and typically are the honkers who don’t approve of me running down their road. I am tempted to introduce some of them to a bull I know, but I digress. In dementia, everyone knows that you (likely) lose your memory, but many just figure death comes from some natural thing involved. In reality, infection/pneumonia, falls, accidents, and other illnesses exacerbated by dementia are MUCH more likely to kill you than brain atrophy, but all of these are caused by the disease. It isn’t the boogeyman…it is in your face as it take your loved one…and it needs to be vanquished….and now. 🙁
- The right shoes matter– Running requires good shoes. I bought some cheapies for about $20 figuring I may need several pairs during my run training. Little did I know that they last about 2 runs and die. I have since upgraded to Asics Gel-Venture 7 shoes that last a very long time. They are $50-60. I couldn’t spring for even better ones (I have teens and I work in a non-profit that is a good steward of their donations), but I suspect that the more you pay, the better they hold up and the more gently they treat your legs. Better shoes are lighter, more durable, breathe better, and grip better. They matter. A patient’s shoes also matter. Falls are a HUGE issue with seniors in general and with our beloved in particular. Shoes play into these falls more often than they should. Here are some links with shoes that help fight falling: Link Link Link Link Link . Know this too, bad shoes cause blisters and, ultimately, infections. They can hide/cause corns and painful foot conditions that cannot be expressed to you. Please be intentional in shoe selection, even though you may have to buy multiple pair as they become community property in a memory unit.
- Strength in numbers, but feeling like being alone– I am kind of a loaner. I love people, but I am pretty happy being alone as well. In my training, I need a running group. They are good for pacing, for making the time go further, and for accountability. I have tried to get together a posse of runners…but I run so slow. I also get a lot of catharsis from running alone, so, despite the fact that it would benefit me by running with friends, running by myself works for me for now. When your loved one starts showing the signs of dementia , they NEED friends and family, but will fight it. They don’t want to be embarrassed and fear the worst in interactions. It is hard to be alive, and it add complexity to have to interact with people, so many, sadly, go it alone. We have to help them see their need. Love them. Insert your life into theirs. Love them with all you have.
- Unknown territories-I run everywhere. Here is the map I ran Saturday:
Kind of looks like a scary Jack-in-the-Box to me. 🙂 I ran all over to many areas I had never stepped foot despite having lived in my town for nearly a decade. I never really feared getting lost because I had my phone with a GPS app. It talked to me and always let me know where to go and where I was. My brain, appreciating the auto-pilot mode, chills out and focuses on me not dying from the run. When you have dementia, literally everything becomes “off the grid”. Your brain’s GPS says “recalculating” and messes everything up. Driving, when you get lost easily because of a broken brain GPS, gets to be life-critical. I helped evaluate this website as a way to evaluate when it is time to take away the keys, a tragic day that often makes for some sad/tense times. If you struggle with this issue, read that site, get help from law enforcement and his/her primary care physician. It is a terrible thing, but it beats them getting lost and/or causing an accident.
- Stroopwafels, Pickle juice popsicles, Gu Gel, and other odd foods– When you run long distances…stupid long trails like I will try to dad-bod down in June, you have to eat. You are burning thousands of calories and your body will fail if it falls too far into deficit. I eat Stroopwafels (Stinger) that taste like a waffle with a light honey cream. Mid-run and at the end, I eat a pickle juice popsicle that attempts to replenish my lost salt. (You have to fight hyponatremia and cramps caused by only drinking water when in extreme exercise). These frozen treats are pleasing to me, but perhaps few others. Gu Gel, or a million other brands, can help your electrolytes, give you an energy boost with sugar or caffeine, and help your overall wellness. Others eat a PB&J or other food that probably works just as good. BUT, you have to keep the food and drink coming. Odd yes, but they work. I have seen some oddball food concoctions from my friends and loved ones with dementia as well. This article, and others, was dedicated to such. There may be a problem with taste/smell causing the issue. There may be a memory problem that forgets how he/she likes food…BUT, the bottom line, to me, is as long as they will eat it and it is safe/healthy enough to eat, express grace. Turn away if necessary, but that his how loved one 2.0 now likes things and it isn’t worth an argument. Obviously be sure all things on the plate belong there, that they will not render the food unsafe, and that they can eat it, but, honestly, keeping them eating is often harder than preventing them from eating too much anyway. (Note: diabetes can factor in too…beware to mixing things such that it causes a blood sugar issue.) They need a balanced diet, but how it looks or tastes is in the eye of the beholder. Trust me on this one and comment if I am wrong.
- Experts are not a luxury, they are a necessity– I have been very fortunate to know many runners in my life. Very seldom have they ever tempted me off the couch (other than the 2009 “run” I mentioned above), This time, nearing 50 years old, I have taken a different approach. I have asked my brother Steve, Charlie, T-Jay, Paul/Bulldog, Rebecca, Starr, and 50 people on FB…and others that I should remember and will go back and add…for help. I am a chunky monkey even after losing 100+ pounds. I need experts to give me prep advice. They have been gracious and have already saved my bacon. I wish I knew then in 2009 when I “winged it”. I survived and finished…but didn’t run again for 11 years. My feet were messed up, I was a mess for a week or longer…and just decided running was for the roadrunners and I was a sloth. BUT, when you have a team of advisors helping(more) right, it is easier and you make it better. When you have a loved one diagnosed with dementia, if I have told you once I have told you a million times: you need help. Here are just three pieces I have done on the topic: Link Link Link, but there are many more. You don’t know everything. I study the topic a lot…and LEARN about dementia every stinking day. I am not even a full-time caregiver… We need experts. We need pros. We need a team.
- The road is long…don’t get in a hurry– I am trying to remember that I only promised to try and to finish if I didn’t turn purple. I am making a conscious effort to enjoy the nature of the trail. I snuggle up to a good audiobook or some good music and turn my attention away the stressors of running. If I didn’t do it this way, I could probably finish, but I would miss out on the adventure along the way. There are still lots of things to see and feel. Are you struggling with your loved one being diagnosed with dementia? First allow me to say I am sorry. You have a right to feel down. It is devastating. But, do me and you a little favor and try to live in the moment. Find tricks that work for you and use them. Redirect/change topics. White lie when necessary. Deploy music/art/familiar smells in a wax melt. But don’t rush. Break out the pictures and look them over with your loved one, whether they “know” the pictures or not any more. Assume they know more unless they say/do something wrong, then blame it on the disease. Love them with your entire heart knowing that there are still many awesome and wonderful things left. Take care of yourself and take care of him/her as best you can until the race is won…and then finish with no regrets. Life is too short do do anything less. There will be time to reflect and mourn later…
Update: Nothing to report on the mom front which, sometimes, is good. I will hear much more tomorrow from Hospice and from my brother who gets his 15 minutes a week to see her. My 15 minutes is Thursday. Hence the Shawshank header stays. 🙁 I hate this for mom and get plenty of time to regret missed opportunities with her on my 5 hour Saturday runs every week.. 🙁
Last thing: Our virtual caregiver support group meeting is tomorrow at 6pm CST until at least 7 or 7:30pm. 🙂 If you haven’t got a Zoom link, email me at email@example.com or text/call me at 417-955-2513 and I will assist. If you need help figuring out the Zoom, I will be happy to teach you that too…same contact info. 🙂 Been there, done that. We would love to have the support group “live/in-person” next month. That is the hope although if you are Zoom only we will find a way. There is room at the Cornbread table for all visitors. 🙂
Catch you all soon 🙂 Keep fighting for a cure….