Alzheimer’s and other dementia-related diseases are debilitating for every party involved. Yet, outside of our own families and if lucky enough, paid caregivers, the support is limited. My own struggles with the disease have been two-fold, watching my paternal grandparents suffer for 10+ years and fall victim to this disease and currently supporting my maternal grandfather as he struggles with the life-altering effects of memory decline.
My grandfather was diagnosed with Alzheimer’s over the summer. His short-term memory was gone almost overnight and he has since lost his ability to carry out many everyday functions (i.e. bathing and cooking). On its own, this decline is debilitating but coupled with his other health-related problems and the seldom support we have (outside of my parents and myself) caring for him has become a full-time job, on top of our other responsibilities (careers, volunteer work, and schooling).
This process is not easy. We hit many roadblocks – and if we as his unpaid caregivers did not advocate for him every step of the way, spending our work breaks on the phone with social services, bringing him to appointment after appointment, and filing the mountains of paperwork he would not be living at home and happy (or at least as happy as one could be when they lose their ability to function as they once did). The bright light in the entire process is that after months of waiting, my grandfather’s application for the nursing home diversion program was accepted. Once part of the program, we went through the process of selecting a service coordinator and having medical assessments where we were told he qualified for 24-hour care.
With the newfound knowledge that help would soon be on the way, we were overjoyed, not because we do not love spending time with my grandfather but more knowing that we couldn’t be with him all the time. Yet, early on we didn’t understand the true gravity of the home care crisis. The process of searching for full-time home care through our service coordinator began in early Fall 2021 and is still continuing as we seek to find 24-hour care. Although my grandfather lives 30 minutes outside of Albany, he is considered in a rural area – not on the main bus route and a long drive for many aides, so the search has not been easy. Yet, we were able to find an aide for 6 days a week, 10 hours a day. This is a far cry from the 24-hour care my grandfather requires but we were told because of where he lives and the severe shortage of aides this is basically all we could hope for. In our quest for help, our service coordinator had us share our struggles on social media to try to find help and even offered me training to become an aide since I spend so much time caring for him but to no avail. At barely above minimum wage, how can the state or country expect that people become home aides when the rate is not enough to live on? Simply filling up the gas tank to reach the client’s location, getting them groceries, or paying everyday expenses cannot be expected (or rarely can be done) with such a menial rate.
The aide we were able to hire, drives 30 minutes to get to my grandfather’s, rotating shifts with his partner who is also in health care, sharing one car, while raising a baby. Sadly, this reality is not unique. We count our blessings that our aide stays despite the obstacles, knowing full well that countless others are waiting just as we once were and having the knowledge that this aide may be our only redemption. My grandfather’s home aide works tirelessly to make meals, do laundry, attempt to bathe him, and most importantly keep him company. The peace of mind this gives us, plus the fact that now our daily visits can consist of socialization as opposed to continuous cleaning and meal prepping is a welcoming sight. Yet the rate the aide is paid is unfathomably low for his efforts.
The knowledge that more help may not come is debilitating. With the home care crisis, families like my own have to decide whether to put their loved ones in a nursing home or support them round the clock. Neither decision is easy, but caring for a loved one, especially on top of full-time work, is exhausting. What I have learned is that this is not an easy road. In many ways, regardless of where you live this transition will be a struggle. Watching a loved one deteriorate puts me to the point of tears most days. It is with the support of both unpaid caregivers (like my parents and myself) and home aides that my grandfather is able to maintain some order and normalcy in his life.
As I have said, Alzheimer’s is not just a disease that affects the patient but the mentality and lives of countless family, friends, and caretakers. It is in these caretakers and underappreciated and underpaid home aides that the real gratitude should reside. We, as a state and a democracy, should repay the dedication, hard work, and servitude home aides (and all medical and social support staff) provide by not only acknowledging their work but paying them accordingly.
The challenges of eldercare (and at-home care) are often overlooked but the Fair Pay for Home Care will go a long way toward addressing them. The Fair Pay Act would immensely benefit my grandfather as well as others that are unable to receive any care due to the labor shortage and low wages. Plus, such increases will prove to home aides that their work is not only important but needed and appreciated. With higher rates, more individuals would be willing to work in-home care and hopefully inspire current aides to continue working despite the challenges that may persist. This Act would help us find the 24-hour care we so desperately need for my grandfather and help countless others that have not been as lucky as we have been.
As strong advocates for Fair Pay For Home Care, we were glad to share our story across social media, in the Times Union (the local Albany, NY paper), and on WRGB Channel 6 News!
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