I can’t remember a time when my mother wasn’t caring for someone else — first for me and my four siblings, and then for my father while he battled cancer.
Later, she became a full-time caregiver to both of my grandparents, helping my grandmother navigate the difficult journey of Alzheimer’s disease. My grandmother was my second mother for most of my life. She was a true powerhouse — intelligent, kind, amazing. I was in my early 20s when she started showing signs of the disease, and our special relationship made it that much harder to see her decline. I also watched my mom bravely take it all on without hesitation: showering my grandma daily, making all her meals, and overseeing every tiny aspect of her and my grandfather’s lives. When my grandfather passed away, my mom couldn’t even turn to her own mother for support, as my grandmother’s ability to communicate and understand was already lost to Alzheimer’s disease.
I’m sharing my mom’s story because I want other caregivers to know they are not alone. In fact, my mom’s caregiving story is increasingly common. Today, there are more than 15 million people caring for a friend or family member with Alzheimer’s, and more than two-thirds are women.
According to a recent survey from the Alzheimer’s Association, people overwhelmingly agree that caring for someone with Alzheimer’s or another form of dementia should be a group effort taken on by family or close friends, yet one out of three caregivers are not engaging others in caregiving responsibilities. More than four in five caregivers would have liked more support in providing care for someone with Alzheimer’s or another form of dementia, especially from their family. These statistics resonate with me because I know that my mom took so much of my grandmother’s care on by herself — nothing was ever too hard or too much work when it was for the people she loved, even if it meant putting her own needs on the back burner.
As a new mom, only now, in some small way, am I beginning to truly understand the depth of my mom’s love and sacrifice. I thought I understood the selfless nature needed to care for another, but it doesn’t really hit home until you experience it yourself. I’m also realizing from my mom’s perspective how difficult it can be to ask for help. As a caregiver, it can seem easier to put the blinders on and say, “I’ve got this,” or think that you are the only one who can do the job. But I’ve also learned from my grandmother and mother that it takes village to raise a family, and that reminds me that it’s okay to ask for help.
When I think back on the time when my grandfather was sick and in the hospital, I wish my family had asked for more help. It was hard to know how best to juggle my grandfather’s health issues and my grandmother’s Alzheimer’s. It was confusing and upsetting for my grandmother to see her husband of so many years in the hospital and not fully understand what was going on, but we also didn’t feel right keeping them apart. There just didn’t seem to be a good solution. I now know that we could have called the Alzheimer’s Association’s 24-hour helpline to get advice on how to navigate this difficult time. I know having this guidance and advice would have made things a lot easier on all of us, and especially my mom.
The stresses of caregiving have taken a toll on my mom, but now that my grandmother has passed away, my mom is slowly adjusting to a new reality and coming out of the fog. She is now starting to do things for herself — something my entire family wants for her. For someone who has been a lifelong caregiver, she says it feels very foreign to put herself first, but she is finding her way. In this new chapter, even the simplest things have proved to be nourishing. She makes a point to unplug and enjoy a few hours in her backyard — without her cell phone. She never would have been able to unwind in this way before, when her phone was a constant companion and source of anxiety as she worried about getting a call that my grandmother had fallen, or that there was an emergency.
No one should shoulder the burden of caregiving alone. Everyone needs help. It’s critical that caregivers access resources to help care for themselves, as well as their loved one. When my mom needed help with her caregiving journey, she turned to the Alzheimer’s Association, which helped her immensely, particularly in finding an agency for caregivers in the Los Angeles area. I wouldn’t have known to do that, and I hope sharing this information helps others.
Supporting a caregiver is not always easy or top-of-mind, but it can make a huge difference. Just showing up, being present and available to those who need you can be a real game-changer. Offer to make a trip to the grocery store or run errands. Or make a standing appointment to spend time with the person with Alzheimer’s so their caregiver can go to a support group, visit with friends, take an exercise class, or simply recharge. It can be hard for a caregiver to find time to complete these simple tasks that we often take for granted. If you live far away, call and ask, “How are you?” A quick phone call to check in can go a long way to helping a caregiver feel supported. My mom was always concerned with making sure my grandparents refrigerator was stocked with healthy foods, but when my siblings or I would visit my mom’s kitchen, we would find her own refrigerator empty — she was living on meals of instant ramen or yogurt and fruit. Looking back, while my mom was looking out for my grandparents, my siblings and I could have been doing the same for her. It wouldn’t have taken much for us to make sure she had a kitchen full of the healthy foods she was ensuring that my grandparents had.
As I look back on my mom’s experience as a caregiver, what I wish most is that I’d been more present and cherished every moment with my grandparents while I’d had the chance. It’s one of those things that you don’t always realize in the moment, though. While I would often swing by their house to check in or run a quick errand, I didn’t always take the time to just sit with them, talk, and be together. Not only are these quality moments that, in hindsight, I realize I may have missed out on, but I know that by spending this time with my grandparents, it could have allowed my mom some time to herself.
Being present and available for others is a powerful thing. I’ve been using my social media platform not only to help others, but also to help myself. I’ve shared personal stories on my YouTube channel about parenting, caregiving, and other topics that intersect all our lives. This has led to amazing moments in which I’ve bonded with people who have had experiences similar to mine. But I wouldn’t have had these experiences had I not taken the first step to share my story and to admit that it’s not easy. The community that I’ve built, one of support and honesty and openness, is more than I could have asked for.
In that same vein, I am excited to be a young voice in the fight against Alzheimer’s. I’ve learned that many moments in life are bittersweet and shaded by darkness when you can’t share them with someone you’ve lost, but that sharing those experiences with others who have lived through it can be so empowering. I encourage everyone to join the conversation — share your story and do what you can to reach out to those who need help. I am here, and I am listening.