Let your reasonableness be known to everyone. The Lord is at hand; – Phil 4:5
Happy Monday, friends! Another great opportunity this week to help make a difference in the lives of our friends and family affected by dementia. I hope your weekend went well! Mine was gone in a flash, like they always are. I did attend the 100th birthday of my second cousin Alyce. It was a wonderful event celebrating a spectacular life and was a reminder that dementia is NOT a forgone conclusion in aging. While she isn’t, perhaps, as sharp as a proverbial tack at 100, she is still extremely sharp and truly one of the nicest people you will ever meet! She has lived an amazing life filled with joy, with adventure, with sadness and loss, and with endurance and has done so with a Christian conviction that is winsome and real. May God continue to bless her! 🙂
Today I want to discuss a training video we were presented with from a conference my fellow leaders attended in Atlanta last week. Watch this short 4-minute piece and we shall discuss it:
Did you watch? If not, this won’t make sense. 🙂
I’ll wait here… (Grabbing my copy of The 36 Hour Day to skim through…)
So, what do you make of this? Does it apply at all to our world? I mean, customer service is the last of our worries with our loved ones, isn’t it? I mean, we gotta fill potholes…and do it all day long, don’t we?
I would like to suggest to you that this video IS essential to your mental health, to your support structure, and to your day-to-day walk down this lonely road to the end… minus a cure.
First: Life HAS to be more than filling potholes. You deserve that. Your loved one with dementia deserves that too. This is where the discussion does stray a bit, though, because you and they cannot live without “filling in potholes”. They are more like craters than potholes, but the analogy still works in a roundabout way. We simply have to be able to make it in day-to-day life. There are things that simply have to get done to exist in caregiving. I get it. I truly do. 🙂 However, where we fail sometimes is in the delegation of these tasks. These crater filling tasks.
This may sound a bit selfish, but I am ok with that to a point. If you are a full-time caregiver, I honor you and am in awe of you and your work. I was never a full-time caregiver regardless how much I know and do. I have always had others. You deserve to get to share the fleeting Disney Castle moments too! You more than most others.
My suggestion: Journal and catalog all of the potholes…the crater holes…that need filled. Then lean on your support structure to help fill these. Make a list and check it twice!! Than, when your loved ones and friends and neighbors ask what they can do to help…and they will ask…you will have some tasks for them that may seem mundane, but are essential to free you up for two things: your mental/physical health and for you to have the capacity to seek out a subtle Disney Castle moment of your own. You deserve it. Your loved one with dementia deserves the Disney Castle moments too…and those can be memories that last a lifetime to help counter the memories of cleaning up poop, of long hospital stays, of pre-grief, and of grief. Those will still be there…but they will be joined by some joy too. 🙂
What does this look like? I don’t know. I don’t because I can’t. Everyone’s Disney Castle experience varies in dementia care. First thing’s first here…we aren’t talking some grandiose, real Disney experience here, most likely. BUT, couldn’t it brighten things up a little for enough free time to do some crafts? Maybe get the pictures out and talk about them? (Not quizzing...exclaim, don’t question. “Hey…this picture is when we went to the lake! Oh, we had such a great time that day!”…not “Remember this day??? Remember what we did???” ) Maybe video them a little for posterity? Maybe set the atmosphere a little better with some familiar music and/or soothing smells? Did they like trains, pre-dementia? Perhaps find something train-themed that brightens their day? Do they like crafts? Is there a light craft that will scratch that itch without being a stressor? Shoot for easy wins, not grand adventures. There is plenty of joy in the simple and much less stress and fear of it not going well.
Last thought on this point: Remember, experiences can and will be forgotten. It will make you sad since you went through the effort. It will. The next day you may get a blank stare if you ask if he/she enjoyed the previous day. Instead of dwelling on it, live for the now. Do it again, ala Groundhog’s Day, more than once if it goes well. You may get to experience some fun over and over again…and you will sharpen your skills at it in the process. (Note: Groundhog’s Day isn’t completely family-friendly, but it is very funny).
Next thought: The video this is based on also discussed whelming people. I get it, friends. You likely feel underwhelmed right now in joy and overwhelmed in requirements. The analogy of the video breaks down a bit, but in our case, a solid whelm is better than bad. At least there is consistency….the consistency that is thrived upon by our loved ones. But creating a special moment should just be a bit above the whelm mark and done in such a away that doesn’t throw off the routine too much. Keep the rest of the day the same, just sub in your experience time…the micro-peak, if you will…sandwiched around the familiar. Your odds will be even better if you do.
Lastly: Please eat the meat and spit out the bones. Have tempered expectations…but expect good nevertheless. A little peak of joy beats a pothole any time. Be sure to delegate some pothole filling every day. You cannot do it yourself, and, even if you could, you would be too tired to be the best you could be if you did. Make a list and get people involved helping. Call your local/closest Area Agency on Aging and/or the Alzheimer’s Association (1-800-272-3900) to see if they have anyone who can help with respite care. Check with your church, your neighbors, and friends and family…lots of folks can help a little. Keep trying. Holler at me if I can assist somehow…I am always happy to ask around. 🙂
Am I a Pollyanna? Perhaps a little bit. However, if you can have even an occasional win, it is worth the effort. 🙂
I would love your opinion of this topic. Feel free to comment or email me at email@example.com
Update: Mom is still holding her own. Not a whole lot to report, even after my extended visits lately. I am just trying hard to soak up all of the time I have before it’s gone and I wish the same for you too.
Run update: Ran 5 miles this morning. Had nearly 30 in last week despite some bad running weather and schedules. This week I hope to do 40-50 miles minimum. This 2 day shark jump will be very taxing and I just hope I am ready. 🙂 The shirts should be available to order and will run $20/per. All profits will go to our run, of course. 🙂 Unfortunately, with the stinkin’ inflation, there isn’t a ton of profit per shirt until I sell 100 or more…so that is what I will shoot for. 🙂 They can be shipped, picked up, of if you are in SW Missouir I can bring them to you. 🙂 Here is the fundraiser link in case you have some extra coin availabel you can help beat this thing with: LINK
Last thought: Here is a piece I wrote in 2019 that reminds me of the imagery here, a tad. LINK
Oh…and I was on the news this weekend too. 🙂 Here is their wonderful coverage:
Thank you KY3!