VOICES FROM THE TRENCHES
People struggling to find or provide at-home care, living daily with the grinding, crushing reality of disability and illness have the most salient insight of the problems encountered and usually know best what the solutions should or might be. However, when overwhelmed with meeting the virtually unmeetable needs of extreme disability there is rarely a way to have your voice heard, and sometimes even finding the words can be difficult for an exhausted mind and body. At the JBCCP we propose to offer a platform for voices from the trenches. Here you will find the words of recipients of our grants and other people qualified by experience to testify about the hardships of, as well as the wisdom gained from, living lives of care as givers or receivers.
If you have experience and insight to share that you believe is valuable to others, please write to us at jasonbeckerccp@gmail.com. We want to hear from you.
Hypothesis: Care Matters
Obvious enough, right? No one would argue that a child needs care appropriate to his age and degree of dependency, or that and elder person needs care according to her limitations. No one is against giving people the care they clearly and urgently need – right?
That depends on how you look at it. If you accept ALS’ designation of “terminal,” then care is simple: offer hospice and palliative care, and voila! Appropriate level of care has been accomplished. No invasive or life extending procedures or treatments. The pillow will be fluffed, there will be spoon-feeding and sympathetic clucking when you choke, asphyxiate, or enter CO2 narcosis. Comfort measures only.
But what if a person is not “comfortable” with giving up on life? What if there are things to be accomplished, a family to love, a world to contribute one’s gifts to, a process to complete at one’s pace? And what if a higher level of care can give the needed time? Is the condition then still “terminal.” or is it better described as “survivable”?
Survivable, yes, but with a caveat: If you can afford it. So, we divide people into two groups according to their means: “Terminal” and “Survivable.” I see it this way: Our care and societal infrastructure offers (with a nudge and a wink) a person diagnosed with an illness like ALS two doors to “choose” from. Door A gives you a tracheostomy, mechanical ventilation, a feeding tube, and a communication device when you need them. Oh yes, you can have all that – but psyche! You’ll need rather intense care complete with suctioning, managing complex equipment, plus lots of physically and psychologically demanding routines 24/7 for as long as you shall live.
Now who is going to do all that, we ask you? There’s no realistic way for someone like you, with no silver spoon, to get the four plus reliable and dedicated caregivers that are the minimum number to safely care for you at home. So really, not much of a choice, huh? And do you want to heap the work of four people onto your poor spouse, who is likely to collapse into serious illness himself before long, leaving you right where you are now?
That leaves Door B, with the pillow fluffing etc, (and probably the communication device at least – whew!) and enough Xanax to forget how forsaken you feel and how selfish and foolish for having any thoughts about making a play for Door A….
But I digress. Back to my hypothesis: Care Matters. Why? In this case it matters because it (unlike any ALS drug now available) is capable of turning a fatal disease into a survivable one. Outliers, people who have survived ALS for decades (the usual prognosis is still 5 years), like Steven Hawking, Jason Becker, Steve Gleason most likely have (or had) that cadre of four or more dedicated, reliable, and effective caregivers.
Why? Because they have (or had) sufficient financial, social, and familial resources to support it (and perhaps excellent insurance). Their lives, for whatever reason, were deemed worth these resources. Couldn’t we decide that (to borrow an apt slogan) ALS lives matter, and therefore care matters? If we can find and allocate roughly $200 million annually for ALS drug research, which to date has not produced anything near the life extending effectiveness of even one dedicated and reliable caregiver, let alone four or five such caregivers, then we have the means to bestow reliable, effective, life extending care at home to all persons living with ALS who want to continue living with it – until that drug research finally pays off.
And by the way, how can we trust outcomes in clinical drug trials when we have not stabilized the underlying health of the subjects to the greatest degree possible by providing optimal care? Is the disease causing that deterioration, or is it the stress of suboptimal care? Care-related stress is a variable that should be eliminated.
What’s that you say? We need more evidence that care matters that much? I agree 100%. Let’s provide optimal care as soon as possible so we can observe and document the effects. If we don’t see people routinely living decades with ALS (provided they want to) I’ll buy you a wristwatch.
Serrana Pilar – April, 2026