I am my mother's keeper: Caring for a parent with Alzheimer's

This is by far the most meaningful article I’ve written, a powerful reflection of love, and the most beautiful act of it I’ve ever witnessed. My friend Valerie has been her mother’s caregiver for some time now.  I often find myself in awe of her strength and determination. 

Having experienced my own mother care for her mother, who battled the same disease, I became aware at a young age of the sacrifices and the quiet frustrations that caregiving can bring. I expected to shed light on this subject, and in the process, discovered a new dimension of love and humanity I hadn’t known before.

At 31, while her peers had high expectations for their 30s, Valerie discovered that her mother had Alzheimer’s disease, the most common form of dementia. The news was devastating, especially since her mother had always feared this disease.“It was like her worst nightmare came true.” Valerie shared. “ I felt a lot of anger towards God, because it was the one thing that my mom didn’t want, and now we were in this situation.”

Some people compare Valerie’s experience as the caregiver of her mother to caring for a newborn, but she pushes back on this analogy.

“It’s not the same,” she explains. “You usually plan to become a parent. You prepare for it. But no one signs up to care for their mother with this disease. You just have to figure it out as you go. And while babies grow more independent, people with Alzheimer’s become more dependent with time.”

Becoming a caregiver

As an only child, she took the role of caregiver the moment they received the diagnosis. “Back then, the care wasn’t as hands-on as it is now. I was living on my own, and my mom was still independent.”

But the pandemic changed everything. The lockdown disrupted her mother’s routine, accelerating the progression of the disease. “I moved back home to keep a closer eye on her,” Valerie says. The role of caregiver expanded throughout the year. As her mother’s condition declined, the care intensified.

“Emotionally, I was a wreck for at least three years,” she admits. “Not only because of my own life, but because this disease was my mom’s biggest fear. She was involved in the church and was a very caring woman. She didn’t deserve this. I couldn’t understand it.”

Valerie began grieving the person her mother used to be and the future she had imagined with her mother. “I don’t have children, but I would’ve loved for her to be a grandma. It’s heartbreaking to deal with hopes fading away to a point of no return.”

Despite the emotional toll, she made a conscious decision to be her mother’s caregiver.

When asked whether someone else could take on the caregiving role, Valerie is determined. “No one will care for my mother the way I can.”

For her, a nursing home was never an option. Research shows that unfamiliar environments can worsen dementia symptoms. “I know my mom deserves better. And I’ll give her that for as long as I can.”

But caring for a person with Alzheimer’s means constantly adjusting. ‘My mom keeps entering new phases of the disease. I had to get used to a new version of her each time.” Alzheimer’s can take patients back to earlier parts of their lives, childhood and teenage years, affecting their personality and behavior. 

“Since the diagnosis, I’ve learned not to take things personally when she gets mad at me. If I held grudges, I couldn’t care for her properly.”

Loneliness, grief, and the search for belonging

She admits that caregiving can be an isolating experience. Many of her peers aren’t dealing with aging parents, which makes it difficult for them to understand what she’s going through. “My mother was my best friend,” she says softly. “Now I don’t have a parent to cry to or turn to for advice. I carry it all.” 

She tried joining support groups, but most people there were in their fifties or “sandwich-caregivers” looking after both parents and children. She couldn’t relate, and they couldn’t relate to her. 

“People around me mean well, but when it’s difficult to relate, I don’t go into detail. This experience is so far from their reality.” Caring for her mom and dealing with her own feelings made her depressed. Looking at old photos reminded her that this wasn’t the life she imagined. “We’re living such different lives now,” she reflects.

Finding community in unexpected places

When asked who helped her navigate life changes, her answer was simple: “...social media.” Online, she found a community of mostly black American women her age who were also caregivers.

 Although no one in her daily life fully understood, this virtual space provided her with guidance and solidarity. She also had a case manager who supported her with paperwork.

Change in perspective

The changes in behaviour, perception, and awareness caused by this disease can make it difficult to see your loved one the way you once did. 

“People think forgetfulness is the hardest part, but that’s actually the least of it. I wish her forgetting my name was the only issue. She forgets how to dress, how to use the toilet…it’s confronting.” The contrast is big; her mother was once strong, independent, and nurturing. Now she’s very dependent. “I had to separate the two. She’s technically my mother, and I still love her. It’s a version of her, but it’s not her...”

Yet, my friend still sees a glimpse of the woman she grew up with. “She tells me she loves me every day. Sometimes I have to force it out of her,” she smiles. “But I hold onto that.”

Knowing her mother’s love languages, acts of service, and physical touch, she now hugs her more, offers reassurance, and shows love in ways her mom can still recognize. “What she understands is love, and by loving her in her love languages, I know she’ll receive it. In her lucid moments, she thanks me. She understands that this is love.”

Coping, faith, and healing 

On especially heavy days, Valerie turns to her faith. “I just go to God.” Though she resented God in the beginning, her faith has become her anchor. “It doesn’t get to me anymore,” she says. 

She laughs when asked if she ever relaxes. “There’s no spontaneity anymore. But I relax when I talk to friends. I can’t have a normal conversation with my mom anymore, so I need those talks with others.” Working out also helps, and therapy became a crucial outlet.

What support looks like

In challenging moments like these, it can be difficult to feel supported, but it can be just as difficult for others to truly know how to show up. In this case, Valerie wishes more people understood what real support looks like.

 “People say, ‘Let me know if you need anything,' and when I do, they say they can’t help. That was frustrating.”Her mother was always there for others, but now, many people have pulled away. She believes some people don’t know how to face the disease. “They want to preserve the image they had of her, and I get that, but I wish they were more vocal about it.”She now chooses compassion over resentment. “I now assume they just don’t know how to handle it.”

Her advice? Be specific. 

Ask caregivers what they need and don’t exclude them, she declares. “We’re still human. We still want to be invited to birthdays and dinners. Don’t assume we don’t have time or space. That only isolates us more.” 

Additionally, she admits that she had to learn that if she wanted any type of support or comfort, she had to be vocal and specific about it, and not take it personally when not received.

Lessons in love and resilience

Caregiving has taught Valerie many things, especially about love and health.

“The choices you make now will affect you later. My mom was strong and loving, but she didn’t take her health seriously. ” Nowadays, Valerie has to help her mother up from chairs, tasks that could’ve been easier if her mom had kept being physically active. “If she’s worked her muscles, she might’ve been able to support herself now.”

But what stands out most is love.

“Even now, my mom still tries to take care of me. If I hurt myself, she immediately asks if I’m okay. That’s unconditional love.” In addition, Valerie’s ability to be resilient stems from the strong bond she always had with her mother. “If our relationship had been bad, this would’ve been very different. Caregiving amplifies everything, the good and the hard. I know my mom did everything she could for me, so taking care of her is a no-brainer.”

Advice for caregivers

To those stepping into the caregiving role, what would you tell them? “At first, I read everything I could about Alzheimer’s disease. But it gave me anxiety, I was reading about symptoms that hadn’t happened yet.” 

Her advice is simple: stay present. “Live in the moment. Cherish what you have right now. You can’t predict how it will unfold.”

She also strongly recommends therapy. “The dynamic between you and your loved one can take a toll on your mental health. Make sure your cup is full, whatever that means for you. Don’t forget about yourself.”

Furthermore, I wondered, what if her mother could see her now, lucid and clear, what would she say? “I think she’d thank me. She’d tell me that she’s proud of me. And she’d probably emphasize that she wants me to live my life. 

And what would you want to say to her? I’d thank her for the life she gave me, for the love she’s shown me. I’d tell her I miss her, and that I’ll continue to love and care for her as much as I can.”

Her strength and determination are admirable, as is the deep love she has for her mother. I pray that God continues to fill her with His spirit and strength, so she can keep showing up for her mother and herself. As a bystander, I’ve taken notes, and I’ll make sure to cheer her on and support her every step of the way.