11 Things About Caregiving That Nobody Warns You

As someone who has been caregiving for a family member with dementia for the past year, I will tell you point blank that I really had no idea what it was going to be like until I was doing it. Yes, I knew what the basic tasks might look like, but the sheer endlessness of the day-to-day responsibilities—not to mention the physical, mental, financial, and emotional toll this kind of caregiving takes…well, it blows me away. You truly can’t know what it is like until you are knee-deep in it.

But here’s the thing: knowing that I’m not alone is what has saved me. The more people I talk to about their experiences—which closely mirror mine in so many ways—the more I can get through each day with grace, resilience, and love. And while there’s some truth in the idea that you have to experience it to really understand it, hearing some honest, unedited accounts of what caregiving is really like is a fantastic way to help new caregivers prepare for the experience.

In this piece, we’ll hear from real caregivers about what the experience is like. We’ll also get tips from a licensed mental health professional for managing the often-rocky waters of caregiving for a loved one.

Emotional Challenges

First, let’s look at some of the emotional challenges caregivers often experience. Of course, these challenges are different for each of us, as we all come from different backgrounds and have different care situations.

Here are some emotional challenges that many of us can identify with.

Anticipatory Grief

Jennifer Fink, a former Alzheimer’s caregiver for her mother for 20 years and a volunteer for the
the Alzheimer’s Association says that no one warns you about the “anticipatory grief” of caregiving. Anticipatory grief is a type of grief you live with for a period of time, knowing loss will come eventually and is inevitable.

Anticipatory grief is especially common when it comes to Alzheimer’s and other dementias. That’s because these diseases can take time to unfold. Often, you watch your loved one degenerate over a number of years, with each stage of the disease its own separate loss. “For some, it’s somewhat a quick journey; for others it’s slow,” Fink describes. “Both are horrible in their own ways.”

Swift Changes in Roles and Identities

One of the most difficult aspects of caregiving is the sudden change of identity many of us experience. This is often the case when a child has to start caring for their parents. All of a sudden, you are the parental figure in the relationship. The impact of these changes can be jarring and hard to reconcile.

“As a caregiver related to the patient, and in particular as a child, no one really warns you about the impact of struggling with the decline in health of your parent, of eventually being more their caregiver and being stripped of being just their child,” says Nikki Beauchamp, associate broker at Sotheby’s International Realty, and sole caregiver for her mother and father prior to and up until their deaths.

As Beauchamp describes, these changing roles and relationships can have strong impacts on family dynamics, “especially if those dynamics are already imbalanced and fractured.”

Feeling Alone and Misunderstood

It can be hard for others to truly understand what you are going for, and empathy can sometimes feel hard to come by. Beauchamp describes the unrelenting “strain of having your life consistently derailed by never-ending doctor’s appointments and meetings about doctor’s appointments or spending all of your free time scheduling doctor’s appointments.”

She describes how alone she felt while caring for her parents. “Unless someone has been a caregiver, you’ll find that most of your friends and colleagues will have no understanding and little to no empathy,” she shares.

Physical Impacts

Caregiving can have profound effects on our bodies and our overall physical well-being. Here are some examples.

Stress, Burnout, and Sleep Issues

“Physically, caregiving can lead to chronic stress and burnout, with studies linking it to higher rates of sleep disturbances, anxiety, and even cardiovascular problems,” says Becky Reiter, LPC-S, licensed professional counselor supervisor at Resilience Counseling & Wellness, specializing in caregiver stress, chronic illness, mental health, and more.

For instance, a 2016 systematic review found that 76% of caregivers experienced poor sleep quality, which included not getting enough sleep and waking up frequently throughout the night. According to MedlinePlus at the National Library of Medicine, caregiver stress is linked to a weakened immune system, excess weight gain, and even chronic diseases like heart disease, diabetes, and cancer.

Neglect of Your Own Health

Part of the reason that so many caregivers have negative health impacts is that they find it so hard to take time to manage their own health problems. Caring for someone whose mental or physical abilities are declining is often a full-time job, Fink says. Plus, you’re typically balancing this care while working and taking care of your own family. It becomes overwhelming and nearly impossible to get to the doctor or take preventative steps to stay healthy.

“I facilitate a support group and one member who lost their spouse last summer, is now getting ‘caught up’ with their own health needs,” Fink shares. “They are lucky that nothing has gotten worse to the point of serious issues.”

Mental Health Impacts

Caregiving can have serious impacts on our mental health. Here, we’ll look at some common mental health challenges caregivers face.

Mood Changes

The relentless responsibilities of caregiving can take a toll on your mood and concentration, says Reiter. It can make it difficult to have the bandwidth to show up fully in your own life. “It’s not uncommon to feel chronic overwhelm and frustration, as well as isolation and sometimes even anger,” she says. “This is especially true if a person is carrying the burden of caregiving alone, or if a person feels alone because there are other family members present but only one person is solely responsible for the care coordination.”

Increased Rates of Depression and Anxiety

“One of the toughest realities of caregiving is the emotional rollercoaster of grief, guilt, and resentment,” Reiter describes. “It’s common to experience profound feelings of loss as your loved one’s health changes or guilt when you need a break.” At times, this rollercoaster of emotions can increase your risk of developing mental health conditions like depression and anxiety. For instance, a 2022 study found that 28.6% of caregivers experience anxiety and 38.8% live with depression.

Financial Strain

The financial strain of caregiving should not be underestimated. “Caregivers often face significant financial burdens due to unpaid time off work, purchasing medical supplies, or managing household expenses with less income,” says Reiter. Research from the AARP found that caregivers often have to use their own money to pay for their loved one’s needs, with an average of $7,242 spent yearly. This amounted to an average of 26% of the caregiver’s annual income.

The financial realities of caregiving can also have lasting financial impacts, with many folks being forced to choose between their career and caring for their loved one. “I know women in their 30s who don’t have paid jobs because their mother/grandmother needs 24/7 care,” Fink shares. “This obviously affects their future retirement savings, the ability to buy a home, travel, and have their own family.”

Social Isolation

Caregiving can be an extremely isolating and lonely experience. First of all, there’s the caregiving itself, which can make it hard to maintain a social life. “The challenge of getting out of the house, navigating a social event well might feel more overwhelming than the potential benefits,” Fink says. “This is one reason caregivers might isolate themselves.”

On top of that is the fact that many people don’t usually want to socialize with you and your loved one, especially if your loved one has dementia. “It’s tough to engage with someone who doesn’t remember you or how they’re connected to you, can’t carry on a basic conversation, and without training, they give up trying,” Fink describes. “Now the caregiver is isolated because friends and family don’t visit.”

Navigating Healthcare Systems

Ask any caregiver and they will tell you that aside from caregiving itself, navigating healthcare ends up being a full-time job. Part of this is because of how these systems are set up, but it’s also that you are doing this all without much preparation, and with very little outside support.

“Caregiving involves coordinating with doctors, understanding complex treatment plans, and navigating insurance and legal systems—all without a clear guidebook,” Reiter shares. “It can feel like you’re constantly juggling appointments, long wait times, and paperwork.”

Lack of Preparedness

Overall, many of us go into caregiving in the middle of a crisis—after a hospitalization, accident, or a series of upsetting events that make it clear our loved one can no longer take care of themselves alone. As such, most of us go into caregiving like a deer in headlights, without any preparation at all.

“Most caregivers start without any training and are thrown into roles that demand new skills, like medication management and physical support,” Reiter explains. “This ‘learn as you go’ approach can feel overwhelming and frustrating.”

Troubleshooting: Making a Care Plan

Feeling like you have been thrown out to sea when you first start caregiving is a common reaction. But once you get your bearings, it’s essential that you have a plan to manage the tasks to come.

Reitner suggests creating a care plan along with everyone responsible for caring for your loved one. This might include:

• Outlining caregiving roles
• Making a list of responsibilities and assigning them out to different parties
• Creating and implementing routines to help manage stress
• Gathering resources for extra support, financial help, and disease management and education

Getting Help and Additional Resources

Finally, it’s imperative that you get support as you embark on this journey. Here are some tips from Reitner:

• Look for local caregiver support groups and online communities offered by organizations like the Family Caregiver Alliance and the National Alliance for Caregiving
• Connect with a social worker or case manager who can help you navigate services and resources more efficiently.
• Consider therapy or counseling for yourself, to help manage stress levels and your emotional well-being
• Make time for regular connections with trusted loved ones for a sense of community and a reminder that you’re not alone

Bottom Line

Caregiving can be extremely difficult, and it’s hard to be fully prepared for what lies ahead, especially when so much of caregiving is unpredictable and constantly changing. That’s why it can be helpful to have a blueprint for what’s to come, and to understand what some of the common challenges are. This can help you feel less alone.

Importantly, you should not be expected to do this alone. Support is necessary for caregivers, especially if you are struggling with your mental or physical health. Don’t hesitate to reach out to your healthcare provider or a licensed mental health professional for additional support during this time.