Then they asked him, “What must we do to do the works God requires?”
Jesus answered, “The work of God is this: to believe in the one he has sent.” –John 6:28-9
Howdy to all friends and family…and if you are here you are one or more of these groups…welcome to the Digital Cornbread Table! I hope your weekend was fruitful and a blessing. To my friends that lost their loved one, I am truly sorry for your loss. There seems to be a lot of that going on these days and my heart hurts for each of you. 🙁
This weekend, in keeping my momentum for next year’s Longest Day run and to support a cause I feel strongly about, I ran the 10k of the Citizens Memorial Health Care Foundation’s Heroes for Hospice 5K/10K. Here is what I learned…and how it relates to dementia:
- “Pace Yourself” is really kind of a platitude– Pacing yourself is typically the same as saying “don’t wear yourself out”….and I super appreciate that sentiment. I am used to running LONG distances slow. I am used to “pacing myself”. I ran at about 15 minute miles most generally as I prepared for Runnin’ Til I’m Purple by myself. Therefore I was kind of pacing myself…setting a comfortable pace for myself…for the last 6 months. (Note: I blew that out of the water on the Frisco run a week ago Saturday. I made a mistake and ran the first 10-15 miles far faster than my normal pacing myself pace…and paid for it by wearing out and having to walk too much the second half. In my 10K this Saturday I only had to run 6.2ish miles. Therefore I figured I would just find a weaker member of the herd and run next to them. Problem is, I was the only weak one in the herd. 😉 I finished last at 1 hour 16 minutes and I was comparably very tired when I finished. 12.6 minute miles were much faster than I was used to… So, what does pace have to do with caregiving??? Lots. First, in the early stages of dementia, the amount of mental preparation you need can be higher than the amount of physical preparation. You have to come to grips with the situation, find a routine, etc…and your brain will be tired for it. The end stages, depending on the patient, may require more physical and somewhat less mental. (Bathing, dressing, bobbing and weaving and the like are tiring). You have to prepare for both the mental and the physical toll on you and get help from your care team accordingly.
- Preparation needs vary because situations change– Another thing I wasn’t super used to in my 10k was rain. It rained the first 10 minutes and we splashed through puddles a lot. I wasn’t used to hills…I prepped mostly on a dreadmill with no incline and on the Frisco trail which was largely flat. The 10K had some hills that slowed me down. Can you prepare for every variable in dementia caregiving? LOL. Nobody…even the most seasoned worker at a nursing home has seen it all…and you are in the same boat. Learn all you can, find a good support group or two, and get familiar with the Alzheimer’s Association’s Helpline (1-800-272-3900). Know what you can…but be prepared to research for and ask others for help.
- Aloneness isn’t ideal, but it can still be special– I ran by myself for the most part mostly because the others were faster. That being said, I used my time to reflect on what hospice has meant for me and my family. (Reminder…the event was a fundraiser for Hospice). I thought through all of the equipment they have brought mom to help her in the well over a year she has been approved for their care. I thought of the spiritual help they provide even as we are blocked from visiting. I truly took the opportunity to be thankful for hospice. In those times you are caregiving alone…and these may be more than is ideal…reflect on the good things that happen every day. Think about help your care team has provided instead of dwelling on the aloneness. Prepare some more tasks that can be offloaded to your team so that next time someone asks what they can do you have something that they can do. 🙂 And, in the quiet, just hold his or her hand and listen to a song or watch a show on TV or look at pictures. As sad as things are, you will cherish this alone time later.
- Don’t compare yourself– I have a few neuroses in my brain’s bag of tricks. For one, I base my identity, largely by having most of my life as a large guy, with being overweight. I see myself as fat and talk like I am still 360…(or 460 like several years ago), and not in my 230s and having ran hundreds of miles in 2021. I also struggle with imposter syndrome: feeling like a fake. I was discouraged with finishing last in the 10k Saturday and for walking too much in my 38 miler…until I considered a few things: how far I have come, who I was competing against (in the long run nobody and in the 10k mostly seasoned runners), and how I actually did. My pace for this 6.2 miles was actually faster than I was used to by 2.5-3 minutes a mile! It is no wonder I was tired. When you are caregiving, don’t dwell on anyone else’s caregiving story/experience. Don’t compare your skills to your loved one’s ability to care for you (if it is your mom/dad/grandparent). If you want to compare your efforts, compare only with yourself. Did you try hard? Did you give it a lot of effort? Did you have the best motive you could? If so, rest in that. If not, try harder tomorrow.
- Learn the lingo– Why does jargon have to be so common? Why do we have to learn the lingo of everything we do? Wouldn’t life be easier if we all just spoke plainly using more common words? Runners have lingo. They have words they use. They have special equipment with special names. Running is somewhat of a club of insiders. They are willing to let you in and are happy to have you do so, but in some circles you need to know the special handshake. Come to think of it, maybe this is just my neuroses speaking…I think the reason it FEELS like a club is you have to be transparent, physically, and that makes it harder to not feel weird/excluded. It is a “me problem”, not a group problem. I am hesitant to join runners groups for 2 reasons: they are quite a ways away (and I like to shower after a run)…and because I fear I am so slow I will get left behind….or, worse, cause someone else to have to walk or run slow because of feeling sorry for me. I don’t like that…and it isn’t runner-kind’s fault. (<Screech sound>…veering back on course). There is caregiving lingo that is also foreign until it isn’t. Example: I had never heard of sundowners/sundowning before mom experienced it. It is easy to not know your MME from Namenda. Add to this the deer in the headlights entry point many of us enter through…and it is hard. What is the solution? Study like nobody’s business. Even more valuable and preceding the studying…early detection. See some warning signs? Talk to the doctor. That will buy you time to learn the lingo…and prepare! PLEASE, just do it. Hiding under the covers doesn’t make the Boogey Man go away and not being diagnosed doesn’t help anyone. Just talk to the doc. If they don’t take you seriously, talk to a different doc. So much rides on catching it early.
- Every step counts– It doesn’t matter if you are running 1 block or an ultramarathon…every step in the right direction counts. Keep stepping. Everything you are doing in caregiving counts too. Don’t give up. Keep fighting. Keep helping. Keep asking for help. Keep learning. Keep extending and accepting grace. Keep taking care of yourself too! It is a long run…you will need the extra energy. Your situation is hard, but know that you are not alone. I am still learning about running…and I have sooooo much more to learn. Same with caregiving. But I will keep on fighting and you do too. 🙂
One other fun activity I was fortunate to be able to participate in is The Big Cleanup. It was a grassroots Facebook initiative ran by my friend Paul Maness to encourage as many people as possible to clean up natural spaces like the Frisco Highline Trail. He had over a hundred people clearing trash, recycling, and spiffing up nature…and I applaud his efforts with all my heart. My mom, for the least several years before her dementia got worse, was a walker. She walked everywhere for exercise…and she always carried a Wal-Mart bag with her so she could clean up a little bit every day. I loved that about her and I am sure she would be thrilled with this project! I feel confident it will be an annual event and that Paul would love to have you participate. 🙂
Updates: No update on mom. No visits. No hospice entry allowed. Nothing. Nada. Oh, except sadness over the situation. 🙁
Fundraiser is still going until my birthday on July 9th. It is very nearly $6000! Amazing! Thank you every last one!