Lou Gehrig’s disease
Earlier this year, Richard Glatzer, co-director of the award winning movie, Still Alice, died at the age of 63 after battling ALS for four years. It would have been unfortunate if he had gone with his first reaction when approached to adapt Lisa Genova’s novel into a movie. (Evidently, he almost turned down the project.) Fortunately for us, he did not. One article on this subject indicated that it was Glatzer’s personal connection to independence-robbing illness that gave Still Alice a greater authenticity.
From what I understand, Mr. Glatzer used one finger – using a text-to-speech app – to communicate every directive. I don’t have to know anything about film directing to understand that doing so with his “limitations” would have been extraordinarily clumsy and time consuming. I wonder if his decision to accept the project was made in part because he believed he was the best person for the job. Did you see the movie? Wouldn’t you agree?
Yet all of us are faced with far less daunting struggles than those experienced by Mr. Glatzer and we cave in to our well-honed ability to find every reason not to pursue a task that requires exceptional action on our part.
I’m ashamed of all the excuses I’ve come up with to postpone – or to avoid entirely – new ventures that required more of me than I was willing to give. Ugh – I grieve those lost opportunities when I think of the benefit to me and others such ventures would have provided. But crying over spilled milk won’t undo the past.
Going forward I can commit to seizing new opportunities and disregarding the emotional and physical hurdles in my path.
I can, but will I?
A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones. For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.
Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load. Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.
But does such monitoring invade the loved one’s privacy? Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring. Or do they? What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life. But I digress.
At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place. The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly. If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away. In reality, however, medication mismanagement might be taking place, carried out by the parent.
The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day. The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening. I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it. HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits. Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.
I’m skeptical of Comfort Zone but I’m also its fan. I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation. My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past. A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few. More disease control financing = more cures.
One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences. So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden. Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind. Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible. I’m sorry to burst your bubble – but it’s true.