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7 Things a Caregiver Should Know: Advice From Experienced Caregivers

Advice on being a caregiver

Experienced caregivers share support and advice that has helped them navigate caring for a family member with brain disease

Many people who care for a loved one with brain disease have taken on a new and unfamiliar role. Stepping into the role of a caregiver for the first time and managing everything that comes with it can feel unsettling, emotional, and even lonely. But if you’ve transitioned into a caregiver role, know that you’re not alone. Support from others can give you the strength and knowledge you need to navigate any challenges. We’ve rounded up practical advice and personal insights about being a caregiver from others who have been in your shoes. We hope these insights will help make your journey a little lighter.

What Advice Should a Caregiver Know?

Learning how to be a good caregiver for someone living with a brain disease like Lewy body dementia or Alzheimer’s or a brain tumor requires time, emotional strength, and confronting challenges as they arise. Here are seven tips from experienced caregivers.

Surround yourself with support

Caregiving can feel like a big responsibility, but it isn’t one you need to take on by yourself. Whether with friends and family or trained specialists, assembling a caregiving team will help you delegate some responsibilities. That ensures your loved one receives quality care. If you’re looking to bring in professionals, think about including in-home caregiving staff and physical, occupational, and speech therapists.

When Mary Jo moved home to become her parents’ caregiver, she worked closely with a personal family caregiving team and a couple of therapists. This support allowed her to continue her career while still being there for her parents. “Lourdes helps take care of my mother, and Ahmed helps take care of my father,” she says. “They have become a lifeline for me because I don’t have to stress out anymore about…the ups and downs of trying to find consistent good care.”

Play to your strengths

Everyone can contribute to caregiving by drawing on their unique strengths. Nancy, a caregiver to her father with Lewy body dementia, recognized how she and her sisters each took on a different role in caring for their father, based on their traits and experiences.

Nancy acted as the administrator, using her experience in government and nonprofit work to apply for medical assistance and complete paperwork. Her older sister offered her caring, sensitive nature and stayed by their father’s side to attend to his needs. Another sister, a therapist who works in rehabilitation with people with head injuries, understood medical language and wrote letters to their father’s doctors.

“I just learned that we all have our gifts, and that was my gift to be able to organize things and keep things in order,” Nancy says. “Even though I would like to be like my sisters, they’d probably like to be more like me. We’re all given gifts for a reason.” With Nancy acting as the hub, the sisters played to their strengths and worked together to care for their father.

Take time for yourself

Because caregiving can require extensive time, it’s easy for caregivers to dedicate their days completely to their loved one. But without carving out time to recharge, you won’t have the energy to help others. Your self-care is important too.

While caring for her father, Nancy tried to take one day each week for herself. On this day, she wouldn’t visit her parents and would focus on her own needs. She also made sure to plan a couple of much-needed vacations, trusting her father was in good hands while she was away.

Find a connection with your loved one

When a neurodegenerative disease progresses, it can affect things like personality, speech, and memory. The person you’re caring for may seem very different from the person they were before they experienced symptoms. But many caregivers have found simple ways to connect with their loved one. That can be through paging through old photos or reading familiar stories together.

Ken, whose father had a rare type of dementia called Pick’s disease, turned to music. When he was a child, Ken’s father would sing the songs of singer-songwriter Bobby Goldsboro. So he fell back on these familiar tunes to connect with his father. “He would look at me and make the connection that I was someone significant in his life,” says Ken. “Although he didn’t know my name and he didn’t know that I was his son, the music really bridged the gap.”

Cherish the memories

It can be difficult when your loved one is not able to recall precious events of the past or even their short-term memories. As a caregiver, you may have the responsibility of remembering the moments you have shared. Angela, whose husband, Matt, has had surgery to remove benign brain tumors called meningiomas, has been there.

“There have been some really sad moments where there are things that have been really, really important to me and he doesn’t remember them at all,” she says. “It’s just not there.” Although Angela grieves and adapts to the changes in Matt’s personality and memory, she also cherishes the memories they have made together and holds them in her heart. “We will have an experience and Matt won’t really remember it. I have to carry the memory of it,” she says.

Share your experience

As a writer, Nancy felt drawn to sharing her experience. But it didn’t happen right away. “It just takes a long time for your brain to process things and to grieve,” she says. Her resulting book, “Dancing with Lewy,” not only includes Nancy’s story but also several of her father’s poems, which give a first-hand perspective of the man he was.

You may or may not feel comfortable sharing your story, but many caregivers have discovered an extra layer of purpose and meaning in their experience when they talk about it with others. It provides an opportunity to convey the realities of caregiving and connect with people who understand and support them. That communication can take different forms and involve audiences large or small.

Ken, for example, created a YouTube channel to document time with his father. After losing his dad, Ken continued to share his father’s story to raise awareness about dementia, speaking up about caregiver burnout and the need for more research into brain diseases.

See a professional to help manage grief

Caregiving often involves a sense of loss and grief for the person you once knew as well as some heavy emotions that come with taking on a caregiver role. Mary Jo remembers being in “a very dark place”—unsure what to do, stressed beyond belief, and afraid of the future. She had so many questions: “Who’s going to be the power of attorney? Who’s going to talk to the doctors? Who’s going to make sure that my mom doesn’t walk out of the house in the middle of the night? Who’s going to make sure that my dad doesn’t fall?”

The loss of her mother’s friendship and knowing she can’t share in Mary Jo’s day-to-day life has been hard. “It’s devastating to have the one you love right there and you can’t even talk to her and tell her about your day,” Mary Jo says. She compares her time with her mother to caring for a child. “It hurts when I have friends who have so many great things that they do with their mothers… and I can’t. I’m just trying to keep her alive.”

Having a trusted professional to turn to can help you uncover and manage these very valid emotions. Support comes in many forms. So build your team, care for yourself, and share your experience. All of this can be done with a close circle of people, a therapist, or a large audience. You don’t have to go through this journey alone.

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we won’t have to imagine a world without brain disease, we’ll be able to live in one.