Honoring Family Caregivers: Real Life Perspectives from the Front Lines

November is National Family Caregivers Month, a dedicated time to honor and show appreciation for the unsung heroes among us, family caregivers.  These individuals provide invaluable support to family members with Alzheimer’s and dementia across the United States.  Caregiving is a profound expression of love, but it can also exert a significant emotional, physical, and financial toll.  Caregivers often find themselves at an increased risk for poor mental health, potentially leading them down the same paths as those they care for. 

During this Family Caregivers Month, we're privileged to hear from a diverse group of caregivers and advocates within our community.  They graciously shared their unique caregiving journeys, shedding light on the challenges they've faced and effective strategies they've discovered along the way.  Join us in recognizing and honoring the resilience of caregivers as they generously share their experiences to uplift and assist others going through similar paths.  

Elizabeth Humphreys – Founder of Mind What Matters Nonprofit, Thirteen Year Caregiver 

"Please don't allow yourself to feel guilt, as it is the number one enemy of caregivers.  When you do ultimately feel it creeping in, as we all do, gently acknowledge what it is and then find the strength to let it go.  You can not be everything all the time, and you're grieving while you are trying to do the hardest work there is.  Be gentle with yourself, and know that you are doing your best. On your worst day, it is still ok to get angry and be human, even at your loved one. It will never feel like "enough" no matter how much you do.  The disease will always keep taking.  It isn't your loved one doing that, it is the disease.  You can only give up so much of yourself.  Find the balance and make a choice to hold on to who you are as a caregiver.  They won't survive this journey, but you have to.  Let that be the legacy they leave in you." 

Liz cared for her mother for 13 years, before she recently passed away at the end of this September.  She is the founder of Mind What Matters nonprofit, an organization that supports family caregivers of Alzheimer’s and other related dementias.  Mind What Matters has generously provided over 100 respite care grants to family caregivers in nearly 37 states over the past 3 years.  These grants offer caregivers the opportunity to take a well-deserved break, reconnect with friends, engage in self-care, and recharge for the road ahead.  If you're inspired by Mind What Matters’ mission and would like to contribute during this season of giving, we encourage you to visit its website here and make a donation.  

Challenges Across Stages:  I found dealing with three children and working and being a caregiver to be extremely difficult.  The feelings of burnout crept in a lot, and it took a lot of perseverance and strength to not get swallowed whole by Alzheimer's.  There were long periods of time when I didn't know where I began, and my mother's illness stopped.  I felt heavy, and those feelings of heaviness gave way to numbness.  The beginning when we didn't know what was wrong was frightening and frustrating.  The middle when she was so needy and could no longer be the parent I needed was filled with anger and resentment (that I now regret feeling! There is that guilt again).  The end was heartbreaking in every way, and I felt I lost control over my mother's care as the facility dictated more than I would have liked.  There is no easy part of this disease, all you can do is white knuckle it to the end and try your best to hang on.  It is all hard, every stage.  You are slowly losing the person you love and instead of celebrating each new milestone a new baby/child learns you are doing the opposite.  You grieve each piece lost. It is crushing, and the end is usually very difficult too.  Many facilities don't or aren't aware of end-of-life signs in dementia/Alzheimer's patients.  It makes for even a difficult dying process for the family and loved ones alike. 

Coping Strategies: I have found having a good therapist you see as often as you can afford, crying whenever and wherever you feel the urge to let the feelings out, maintaining a healthy and balanced diet with no processed food, getting good sleep and exercising five days a week are the best ways to fight this disease as a caregiver.  Every single one (except therapy if you can't afford it-although many are willing to take on pro bono/reduced rate cases) was non-negotiable.  I could always feel the burnout coming on quicker if I failed to eat right, sleep well, work out, or I stuffed my feelings down.  If you don't let them out, they will make you sick.  So, if you're in the grocery store and you see a mother daughter shopping and it makes you sad; go outside to your car and have a good long cry.  Scream if you have to.  Just don't hold it in and let the grief seep out into other parts of your life.  This disease takes enough, don't let it take you. 

MJ Grant – A CODA Family Caregiver and Advocate  

"In the world of caregiving for Deaf individuals, the heart of the matter is all about connecting through compassionate, heartfelt communication in sign language, their natural language.  It’s more than just being empathetic and kind; it’s about truly understanding Deaf culture and the significance of their connections with other Deaf individuals.  These community bonds are as vital as air, playing a crucial role in their overall happiness and sense of belonging.  So, when we care, we do it with a deep cultural insight and a commitment to support these invaluable interactions.  This way, our caregiving becomes a nurturing, successful journey, deeply rooted in genuine care and respect for their unique life experiences."   

Mary Jane (aka MJ) Grant, is a CODA (child of deaf adults), who advocates for the deaf, especially those with dementia.  Deaf or hard of hearing can increase the risk of developing dementia, and resources are extremely limited for the deaf community when it comes to treating Alzheimer’s and other neurodegenerative diseases.  As a caregiver to her mother, she knows first-hand the challenges of caring for those who are deaf and is working hard to increase access to resources.  MJ is patient and loving with her mother Carmen as she progresses through memory loss and dementia, and she shares her story and advocacy on social media here.  

Significant Challenges and Unforeseen Joys: Caring for my mother, who is Deaf and living with dementia, has been a profound part of my life for several years.  This journey, filled with its ups and downs, has been soul enriching, teaching me invaluable lessons in empathy, resilience, and the deep bonds of family.  Although she is now in a long-term care facility, the connection we share remains unbreakable.  Navigating the complexities of her care has highlighted the importance of advocacy and accessibility in the healthcare system for the Deaf community.  Despite her memory loss and language decline, every visit with her reinforces the unbreakable bond we share.  This experience, though heartbreaking at times, has strengthened my resolve to bring awareness to the unique needs of Deaf individuals in caregiving scenarios.  Providing care for a Deaf loved one presents unique challenges, largely due to a service landscape not fully equipped to be inclusive for all.  My journey has involved advocating for communication access through Deaf caregivers proficient in ASL, while also managing the emotional and physical demands of caregiving.  This path has been a blend of significant challenges and unforeseen joys.  These experiences have reinforced my desire for more direct care services from professionals who are not just skilled in ASL, but who also have a deep understanding of Deaf culture, ensuring that no one is left behind in receiving compassionate and effective care.  

Balancing Caregiving and Personal Life:  My journey as a caregiver has been enriched by the support of a compassionate community.  Balancing soul-nourishing activities like roller skating, CrossFit, and embracing moments with loved ones has been crucial, albeit often intertwined with guilt.  My passion for travel and sharing this journey offers a sense of purpose and connection, turning pain into purpose.  These practices, coupled with the development of healthy boundaries, have been pivotal in helping me stay emotionally grounded.  Consistently engaging in these self-care routines, despite the accompanying feelings of guilt, plays an incredibly important role in this journey. 

Jessie Hillock – Dementia Navigation Coach and Founder of the Memory Compass  

"I encourage all families navigating a diagnosis of dementia to be proactive within a reactive healthcare system.  There is power in education and building a plan of action." 

Jessie Hillock has built her career around helping family caregivers in their journey.  She previously worked for six years in skilled nursing communities as a speech-language pathologist with an area of specialty on executive function decline challenges related to dementia.  In that role, she often met families in crisis situations and felt driven to fill a need in education and guidance within her community, leading her to start The Memory Compass where she offers specialized Dementia Navigation consultations for family members and care partners.  

Noticing Common Challenges: Many of my clients are a part of the “sandwich” generation, caring for their children and now juggling managing the care of their aging parents.  Many are tackling complicated family dynamics, long-distance care navigation, financial strain, marital strain, isolation, burnout, guilt, and even a decline in their own personal health.  

Gaining Confidence:  I love seeing families gain confidence in their care role when we work together to build their village of support, strategize through challenging care concerns, and recognize and implement boundaries.   

Ty Lewis – Founder of In Case I Forget Dementia Coaching, Caregiver for Nine Years