What Will the Caregiving Journey Be Like?

The caregiving journey goes better when you understand your why, your feelings, and the reality check before the work begins.

Laurie lives with her father. She worked as a cashier at a thrift store. After he developed Alzheimer’s disease, the family had decisions to make. He had little in savings, and the house, his only real asset, badly needed repairs.

Fortunately, Laurie’s father was a veteran, and he qualified for a program that pays family caregivers a stipend for home-based care. With the stipend and additional family support, Laurie now earns more than she did at the thrift store. Her father stays in his own home, cared for by someone he trusts. The house will be Laurie’s when he passes away.

Laurie’s story is one among many. I share it because it answers a question every caregiver should ask early. Why am I doing this?

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Four Questions Worth Asking Early

What will the caregiving journey be like? There’s no clear answer to that question at the beginning of caregiving. But there are questions worth asking from the start, and the answers shape everything that follows.

Right now, 11.9 million Americans are caring for someone with dementia, and they provide more than 30 hours of unpaid care a week on average. Whatever the caregiving journey looks like for you, it’s rarely a small addition to an otherwise unchanged life. It reshapes the whole thing.

Four questions are worth asking early, before the demands build. Why is this person a caregiver? What does the person feel, and what support do they need? Is more being asked of them than they can give? What would make the journey easier?

This month, I want to walk through three parts of the caregiving journey that don’t get talked about enough. Why people become caregivers in the first place. How it actually feels at the start. And the reality check that follows.

Why Are You a Caregiver?

Caregiving is not easy. When things get hard, a clear answer to “why am I doing this?” is what helps a person continue on. The reason matters more than any skill a person brings.

The psychiatrist Viktor Frankl survived years in concentration camps during the Holocaust, and he made a powerful observation from that experience. Those who had a reason to continue on endured almost anything. Those who didn't often didn't.

People often give a straightforward answer when asked how they became a caregiver. A person lives nearby, or is retired, or has a background in healthcare. That explains how someone came to the role. It doesn’t explain what motivates them.

Often the person is dearly loved, and providing that care matters deeply. Others feel a strong sense of responsibility. They took care of me; now it’s my turn. Culture and obligation are powerful too. And for some, helping simply comes naturally.

Money belongs on that list. Financial factors are a common, practical, and no less real motivation for caregiving. As Laurie’s story shows, programs exist, particularly through the VA for veterans and their families, that can turn what feels like an impossible financial situation into a sustainable one. A strong why doesn’t have to be purely emotional to be legitimate.

“I Had No Choice” Is a Red Flag

Sometimes caregivers say they had no choice. No one else could do it. The person couldn’t manage alone. There may well be a great deal of truth in this.

But when “no choice” is the answer to why, the caregiving role starts to feel less like a commitment and more like a trap. The risk of burnout and resentment rises, and ultimately both the caregiver and the person being cared for suffer.

There are two ways forward. One is to look at alternatives. Ask for something different. More help, more time off, more say in how things are done. Area Agencies on Aging and the Eldercare Locator are a good place to start looking.

The other is to look more deeply at the motivation underneath the trapped feeling. A closer look may reveal that the role also meets a real need: to feel wanted, appreciated, or simply needed. That doesn’t erase the difficulty, but it can shift the story you’re telling yourself about why you’re there.

How It Actually Feels at the Start

A reason isn’t the same as a feeling. Multiple emotions are commonly present at the start, sometimes suppressed, vague, or unnoticed. Dread, worry, unrealistic optimism, all possibly present at once. Whatever the emotions are, they still have an impact, recognized or not.

One of the most powerful is grief, and it’s rarely named this early. It can begin right at the time of diagnosis. The person is suddenly seen differently, not quite who they were, with a future that now looks more clouded. That’s a real grief, a weight that makes life harder before caregiving has even truly begun. Over time, it can lose some of its weight, especially when it’s met with kindness and understanding rather than pushed aside in favor of logistics and to-do lists. Naming it early, even just to yourself, matters.

Resentment is often present too, and seldom talked about openly. Sometimes it’s about how life will change. Other times it’s the “why me?” It’s hard to let go of, and it can grow and cause real damage if it isn’t addressed.

There’s a different way to see things. A person can decide to accept the role or to change it. Neither is easy, but it is a choice. When a role is not accepted but taken anyway, no real choice has been made, and the resentment builds underneath it.

Some caregivers start with a different pairing of thoughts. I knew there would be days like this, just like I know I can do this. When the hard part is expected, it doesn’t hit as hard. After a difficult day, “hard, but I can do it” becomes “hard, but I did it.” That feeling gets stronger over time, if you let it.

The Reality Check

The reality check needs to start with the person receiving care. That person is not a problem to be managed. They are a person, and more than anyone else, they are the one living through what dementia does to a life.

“I can take care of myself” has been true for a lifetime. Now it no longer is. A person may say, “You don’t need to buy things for me; I can drive to the store myself, it’s only a couple miles away.” It sounds logical. But look closely, and there’s denial there too, along with judgment that’s no longer fully reliable. What looks like stubbornness is also something else, a plain request to be treated with dignity and to have some say over one’s own life.

Respecting a person’s will and assuring their safety often conflict directly. Each answer, yes or no, has a cost. Even so, caregiving plans are far more likely to succeed when there’s real agreement from the person with dementia, not just a decision made for them.

The family is the other reality check. One person may think more help is needed now; another may feel it’s still too soon. A family aligned on the caregiving plan tends to have far better results than one that stays divided. “Don’t argue over me” becomes a common plea when things fall apart.

Two realities are worth naming honestly here. The first is time. Sometimes a person is chosen as the “logical” caregiver because “she has more free time.” But no one’s time is actually free. Fairness means every person’s time counts.

The second is money. Families caring for someone with dementia spend on average around $12,000 a year out of pocket, on top of any lost income. When family members are on the same page about this, it’s manageable. When they aren’t, it turns into who has the money, how much is spent and on what, and who should be paying.

The GOLD Approach to the Caregiving Journey

When families are starting out, I recommend the GOLD approach:

Get clear on your why. Know your own reason before you need it most. “I had no choice” is a red flag, not an answer.

Own what you feel. Grief, resentment, dread. Name it early, even just to yourself.

Listen to the person receiving care. Real agreement holds. A decision made for them often doesn’t.

Decide together as a family. Every person’s time counts, and a family aligned on the plan does far better than one that stays divided.

Walking In Prepared

Laurie’s why includes money, and it’s no less real for that. Her father stays in his own home, cared for by someone he trusts.

None of this diminishes the devotion behind caregiving. Family caregivers carry most of the weight of dementia care in this country, quietly and mostly unseen. As the saying goes, to the world you may be one person, but to one person, you may be the world.

Understanding what you’re walking into at the start of the caregiving journey is what keeps you from being caught unprepared.

Warmest Aloha,

Dr. Warren Wong

PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.