Disclaimer: Some of my articles are funny and some are just sad. This one teeters toward the latter. Don’t give up on the site because of not wanting to mope around…we do much more than that around here. Read to the end, too, because there is hope.
It was a nice day yesterday. I worked hard until 3pm, then headed down to see mom and to join my stepdad in an interview with the Springfield News Leader, our regional newspaper, on the topic of long-distance caregiving. Jackie Rehwald, the reporter, was super nice and patient with the distractions and other challenges and I look forward to posting here what she gleaned from our time together with mom. I thought the interview went well, but one never knows until the final work appears. 🙂 Mom was in a very happy mood, as has been the new norm for a couple months.
So, Blog Boy, what was so sad about an interview (except the fact that the photographer didn’t use the skinny filter on me, so you will see me in living color, rolls and all)? It was something mom said later during supper that was skipped over until it hit me like a 2×4 later.
Here is the conversation, as closely as I can remember it:
“Good supper, huh mom?” -me
“I don’t know?”- mom, belly laughing
<Lots of sounds, Andy Griffith Show and otherwise.>
“Five. Five. Four. Four.” -mom, looking at her fingers
“Five. Five. Four. Four?” -I repeat in my best empathy voice
“I am getting better” -mom
“You are getting better” -me, lying.
I don’t remember the last time she talked to me about how she was doing, but it has been a long, long time. She had made declarations and actions…countless…that seemed to show how she was, if you will, but seldom, if ever, has she talked about it. I brushed by it, agreeing with her but knowing I was lying. Is she better? Well, she IS happier. Anxiety levels are low. Few if any falls. However, she is completely immobile, so falling will be hard. She is pretty much unintelligible in speech save from a few lucid sentences here and there like the before mentioned zinger. Piano…barely and seldom. No life, minimal interaction minus my and John’s times there other than other family coming when they can. “Better” is a relative term. However, if she says she is better, she is better as far as I am concerned in our conversation….but the drive home gave me pause.
She is not better…she is dying, and too quickly. She is immobile and one infection away from doing much worse. She sleeps and rests nearly all day. No exercise, physical or mental. By all accounts, she is not better. She is dying. And I hate it for her. 🙁
So, is there hope? Can this seemingly undefeated champion of the Life & Death Boxing Federation take some blows? I say yes. Here is some reasons for hope for you and for me:
H is for “Help is on the way”. In my humble opinion, folks are finally seeing just how big of a pain in the rear this disease truly is. Millions of Americans struggling with dementia, some in their 20s and 30s (!), people should take heed. Slowly people are studying diet and exercise as possible prevention measures. Veterans groups are studying the brain and performing countless brain scans. Slowly people are learning the warning signs and getting checked! And, possibly the most encouraging is how people, in many cases, are rallying behind folks with the disease in Walks to End Alzheimer’s, Longest Day events, and other fundraisers which pump millions into research. Hold fast, patient or caregiver, help is on the way!
O is for Ongoing Research. With this slow but sure increase in awareness and better fundraising, there should be more and more very smart folks seeking cures and treatments. There have been some super exciting breakthroughs in just the last year, most notably, in my opinion, being the use of ultrasounds to gently open and close the blood brain barrier. There are other breakthroughs and changes in focus as science, guided by God’s providence, seeks a cure. Lots and lots of folks are also assisting in clinical trials in searching for a cure. Trial Match, a program put on by the Alzheimer’s Association, while not the only one doing so, is matching countless folks to trials.
P is for Pharmaceuticals. The financial cost of dementia is STAGGERING!!!!! (Not to mention the human cost, which, in my book, trumps the $$$). This article estimates the value of a cure for dementia to easily be in the trillions. Whine if you want about a free(ish) market system like we have, but know this…companies chase money. AND, there is a tremendous amount of money to be made from curing this mess. Pharmaceutical companies, regardless how altruistic the motive, desperately want a cure.
E is for Eternity. For those who are likely past the point of no return, like mom, who aren’t going to “get better”, eternity awaits. Mom believes in Christ as her only hope and has for a some time now. When you think of it, we are all terminal and not “getting better”, if you will. Nobody gets out of here alive! My faith is our my lasting hope and I pray yours is for you as well. I won’t preach here, but I am happy to discuss my faith offline with you any time. 🙂 417-955-2513 is my cell for calls or texts and email@example.com is my personal email.
We are all in a really challenging situation here. We have to stick together. We have to advocate together, give together, learn together, and grow together. There is strength (inside and out) in numbers. Thank you for coming to Digital Cornbread today, like always! Now, go get’em!