This month is Alzheimer’s Disease Awareness and Caregivers Month. I’m excited to share a guest submission from our very own Aurora Delespin-Jones, program manager for the D.C. Office on Aging (DCOA). Aurora has dedicated her career to serving District residents and was the 2016 winner of the Morris & Gwendolyn Cafritz Foundation Award for Distinguished D.C. Government Employees. She brings creativity, compassion, and leadership to her role here at DCOA and I’m grateful to have her lead a team that works passionately with all our community partners to deliver programs that matter to our seniors, people with disabilities, and caregivers.
It’s a privilege to share her words of inspiration with all of you, as we are fortunate to receive them so often from her as we work tirelessly to be an agency of people serving people, from the heart. To all caregivers, thank you for what you do, day in and day out. Thank you for spreading kindness as you improve the quality of life for those you care for. Know that you are not alone in your journey and DCOA is here to support you. We are honored to celebrate you, not just during the month of November, but every day of the year!
Aging is living!
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Wow, how time flies! On Oct. 18, 2017, I celebrated what would have been my mother’s 102nd birthday. It seems like an eternity, yet only yesterday since I heard her voice calling my name; felt her warmth as she held me tightly during night turnings; saw her infectious smile affirming daily her unconditional love for me; and more importantly, what I interpreted as her gratefulness for the care she received in her home from her immediate and church families, paid caregivers, and friends. In retrospect, my heart aches without her, but the prospect of the impact this article may have in helping someone move forward with hope through the caring process for a loved one with dementia or a debilitating illness is overshadowing my pain.
My mom’s challenge with renal failure, high blood pressure, and heart attacks were minor in the scheme of things compared to our challenge with her dementia. You see, I could give her a pill and monitor her diet and exercise to control the former; however, there was no band-aide large enough to cover the expansive open wound of dementia. Nor was there a topical potion to dry up the continuous and uncharacteristically oozing of behaviors mom displayed. The purse that rested on the nightstand behind the lamp by her bedside each day would later be lost frequently and found in the oddest places. Or, what we referred to as her “three Faces of Eve” — frustration, emotional outbursts, or gratefulness — would show up almost simultaneously at meal, bath, or bedtimes, on days she was not willing to comply with anything and confused by everything! Oh, how I love her even the more as I share, and the tears I am shedding are of joy because I seized each opportunity to care. And I optimized every resource at my disposal, with a limited budget to ensure my mom had the best in the comfort of her home.
Balancing the responsibility of two homes, a career, a robust ministry, and family on a high-wire was draining then, and now satisfying, because I found a way to get it all done! And I’ve used the lessons learned to coordinate my own care-web (a coordinated system of supports, services and resources, scripted for caregivers) to follow when I need care. So, this is my prospect of helping other care providers for people with Alzheimer’s or dementia.
Caring is critical for people with dementia and more critically important for the unpaid care provider. You must find time outside the daily routine for respite. You must find balance by establishing boundaries for your own well-being during the journey. It is a researched fact that many caregivers, especially women, suffer from poor health and die prematurely due to lack of self-care. Statistically speaking, if you are one of the 43.5 million estimated unpaid caregivers in America, count yourself important enough to get regular checkups, take long soothing baths, block out time for a monthly movie with popcorn and the works!
Take advantage of every available discount or free service you can to meet the needs of you and the care recipient. Share with others as often as you can to pour out toxic feelings of guilt, loneliness, frustration, and social depravity. And replenish yourself with tools to cope and new methodologies to try as shared by others. Make a list of your own care providers, medications, physicians and care preferences to ease the burden and ensure your wishes are met if you become ill.
Engage in laughter, be silly at times and watch a lot of comedies for cure. Take up a hobby, try to be a social butterfly, and dance when you can. This will help strengthen you in living well. And, when the winds of frustration blow hard and the despair of the inevitable becomes a reality, you will be better prepared to stand firm on the high-wire!
In recognition of Alzheimer’s Awareness Month, I salute and honor all care providers. I acknowledge your labor of love and dedicated spirit — and ask that you care for yourselves more deeply. Please know that we at the D.C. Office on Aging are in it with you. You are not alone! I am appreciative of this opportunity for retrospection and the prospectus of encouraging you again as you move forward in the care process. Until then, love yourself as you love others.
Still in one peace!
Aurora