Posted 2/12/2021 (Such a cool date with all the 2s and 1s and such. The 0 is a little inconvenient, but it is all good…)
“May the Lord repay you for what you have done. May you be richly rewarded by the Lord, the God of Israel, under whose wings you have come to take refuge.” –Ruth 2:12
Support: late 14th century., “act of assistance, backing, help, aid,” from support (v.). Meaning “that which supports, one who provides assistance, protection, backing, etc.” is early 15c. Sense of “bearing of expense” is mid-15c. Physical sense of “that which supports” is from 1560s. Meaning “services which enable something to fulfil its function and remain in operation” (as in tech support) is from 1953.
We all need support. Some of us, your blogger included, sometimes fight support, but it is clear that every single one of us needs some form of support. Just scan through the above definition with me:
- act of assistance, backing, help, aid
- bearing of expense
- that which supports
- services which enable something to fulfil its function and remain in operation
Isn’t that what we are all shooting for in the dementia support community? Is there anyone who more desperately needs an “act of assistance, backing, help, aid“, than a patient and family of a loved one with this disease? I am blessed to work for SeniorAge Area Agency on Aging and am also blessed to volunteer as much as I can for the Alzheimer’s Association. As a trade, I am tech director, disaster preparedness director, alignment director…but I am not vocationally a care coordinator/case worker. However, I am surrounded by them and love to see then at work fulfilling our non-profit’s mission of “Working Together. Finding Solutions. Bettering Lives”. I don’t snoop/listen in on private conversations, but I firmly understand from training and rubbing elbows that their task is daunting in many cases with a “normal” case of helping a senior in need, but even more so with a new case of new client entering DementiaWorld (still the worst name for an amusement park imaginable, or at least right there with MurderHornetVille). We support them and the two of us come up with a solution to their problem, as best we can.
What of the bearing of expense? Are we, in the dementia support world, involved in those touchy issues? Unfortunately we are needed there more often than not, often to the surprise of family. Why? Because one common thread (nothing is an aspect of EVERY case, but this one I hear often) appears in many cases: Poor judgement/problem solving. With my mom it was hyper-generosity. I don’t mean that she was super generous to loved ones although she has always been generous to us. No, mom was generous to strangers to the point of being willing to give away more than she had and needed to live. She was susceptible to scammers who would gladly relieve her of her assets as well. Sadly, many don’t have someone to come along and prevent them from being swindled and help them manage their finances. Perhaps equally sad is folks who were CPAs and CEOs, which understood money far better than I do are reduced to someone who needs to be helped with money.
Physical support, as part of the big picture definition of the term, is important as well. That which supports needs to survive and prevent toppling. That is what a dementia support group and a care team can do well. Dementia support groups “hold up” the family. They allow free conversation and a shoulder to cry on (sometimes on Zoom for now, but it is better than nothing…).This disease devastates many families, especially the ones with no experience nor support mechanisms. One of the things that comes up a lot in support group conversations is a set of super common phrases that always begin with something similar to “Has your mom ever ______?” or “Does your dad ________?” See, we feel like we are the only one that has ever experienced these things and have nowhere to which to turn…but, a miraculous thing happens: Many say “Yes. My mom would ______ sometimes, then would ____, but it went away. Now she ______” It is so re-empowering to know that you are not alone. That is a support group for you.
Care teams provide physical support as well. One needs an MD, a neurologist, a social worker, a trusted spiritual advisor, speech/occupational therapists, financial counselors/elder law attorney, and more. The stronger the team, the less chance of collapse into despair and hopelessness.
The last little part of the word history of “support” is services which enable something to fulfil its function and remain in operation. I do tech support as part of my job and, when someone’s computer is out of whack, my job is to return it to a state of being in whack. 🙂 I have said many times here, mom’s favorite phrase about my tech job is “The only thing I know about computers is they start with a K”. Functionality is a key aspect of support. When you have dementia, your ability to function becomes slowly, but extremely hindered…one aspect at a time. Here is a cartoon version of how hard it can be to be everything for someone:
Here is another:
If you choose support as your calling, expect times like these. That is why we need each other. Multiplying joy, dividing hardship. Fighting together, as a team, for a common goal.
And, speaking of goal, I really want an end to Alzheimer’s. I expect you do too or you wouldn’t have just read the previous 1,000 words. Will you join us? Will you fight to help us realize a dream of a world without dementia? We all need support. There are a million ways to provide it and I write often about these ways…but I won’t tell you what to do of where I want you. Just know this…you have something to offer in support that is desperately needed, and you are appreciated for the effort.
Our Alzheimer’s Caregiver’s Support Group is next Tuesday night at 6pm CST and will conclude whenever we are done. It is free, open to anyone on the planet who needs it, and private/confidential. If you would like an invite to it, email me at email@example.com and I will send you a Zoom link. If you need tech support on how on God’s beautiful Earth to do a Zoom, I can help with that too. 🙂 It is a great life skill that I expect you will enjoy having available, and I am free tech help, so please give me a holler and I will help.
Thank you Digital Cornbread family! I appreciate your support and friendship more than you will ever know. 🙂
Update: Mom was happy, but tired today. As you can tell by the timestamp, I picked a bad time of day (right after lunch) for a visit, but I tried. She had her second vaccine shot Wednesday and did ok since. The nursing home, somehow, continues to get new cases…and keep us out because of it. It is frustrating that they are not mandated to have the vaccine….very frustrating. People die of isolation too. Such a sad legacy of Covid-19…
Please read about it and donate or find donors if you can. 🙂 I am sorry to ask, but what choice is there? I am runnin’ until I am purple for a cure. 🙂
Last two thoughts:
- I got approved for the longitudinal study at Washington University once they are allowed in-person visits again (coming soon…). Here is the link for the program: LINK. WashU is one of the finest dementia research facilities in the world, and getting to participate in their studies is awe-inspiring to me. The program looks amazing. It has been ongoing since 1979 and has had some 900 participants, which may not seem huge, but if you read all that is done it is an amazing number. I sure hope I can help. 🙂
- I realize this piece is a little cliché. I so want to write every day, but have such little time. Thank you for supporting me by offering grace when my writing is more youngster than normal. 🙂