The Thief
I read once that Alzheimer’s disease is often called “The Long Goodbye.” If you are caring for a loved one with Alzheimer’s, you probably understand why. I would imagine that the term “The Long Goodbye” could also be applied to many other diseases, types of dementia, or illnesses that are slow and progressive.
As a caregiver who watched my grandmother struggle with the disease, I found it to be particularly cruel, as it robs not only the body but also the mind.
I prefer to call it “The Thief.”
Alzheimer’s doesn’t steal all at once; it moves slowly like fog rolling in. It settles like smoke, filling in the empty spaces, so that you don’t notice the landscape has changed, and the valuable things missing are long gone: a forgotten word, a faded smile, or a misplaced thought.
Changes that you thought were imagined were actually valuable pieces fading away.
That is the beginning of “The Long Goodbye.”
Riding the Emotional Wave of Caregiving
It’s hard to prepare for “slow grief.” Grieving the person who is still physically in front of you, while watching the old person move out and the new one move in. It can be a slow and painful journey.
Navigating the long cycles of grief can often feel overwhelming. Some days are harder than others. I remember waking up some mornings feeling optimistic and present, but by lunchtime, I was in the bathroom crying, and in the evenings, feeling guilt or shame about how I was feeling.
That’s the emotional wave; the truth that is seldom spoken of. Caregiving is not always easy. It can be beautiful, messy, and painful. It can be both rewarding and exhausting.
Know that you can experience all these emotions and still be a great caregiver.
Understand that when caring for someone with Alzheimer's, it's natural to feel like you are losing parts of them; to mourn the parts that are gone: the voice you don’t hear anymore, the stories they used to tell, and their laugh.
Experiencing emotional ups and downs doesn’t mean you’re doing something wrong. In fact, it often shows just how deeply you love the person you're caring for—especially during one of the most challenging and heartbreaking times of your life.
Learning to hold space for someone unable to do so is an art form. It can mean grief without closure-extending love and help without recognition. And it takes character and strength to keep showing up in that sacred space.
Here are a few gentle ways to help you carry the heavy load.
Permit Yourself to Grieve
It’s ok to feel sad or cry. Caregiving can be hard. Really hard. Remember that if you need help, ask for it. Consider seeing a doctor or talking to a counselor, seeking spiritual guidance, talking to a friend, or a family member. You don't have to go through this alone.
Allow yourself to mourn the versions of them that slip away. You might miss that version, but you can also learn to adapt and get to know the new version of who they are.
Create Small Habits That Bring Meaning
Small daily habits can build genuine moments of peace and joy. Those moments can help anchor you in the middle of the storm. Playing their (or your) favorite music, dancing, taking a nature walk, or reading from their favorite book. Watching their favorite show. All of these things can help bring meaningful interactions.
Make Connection, Not Correction, the Main Thing
Try to love where they are now, and not where they used to be. That can be difficult, having the expectation of where they once were. When they confuse names or tell stories out of order, the first instinct might be to correct them. What if you enter their world without it needing to make sense? What if you’re just present with them, sharing the moment, and listening?
Reach for and Accept Support
You don’t have to be strong all the time. If you need help, ask for it. It doesn’t make you weak to ask for assistance. Lean into support groups, family members willing to help, medical resources, counselors, clergy, or trusted friends.
If you don't get the help you need right away, keep asking!
Ask even when it feels easier not to. Your needs matter, and the more help you get, the better it is for you and the person you care for.
Let Journaling be a Soft Space to Land
Journaling can be a great way to release tension and celebrate wins. Write about hard days and good days. It can be a great way to process your emotions and give yourself space to heal and grow.
Putting pen to paper can help release worries, recognize patterns, and create intentional mindfulness. It’s a great tool to gain perspective and process emotions.
You don’t need a fancy journal to start. You can start with plain paper and a crayon. It’s up to you. If you like printing your own or going digital, check out some here. If not, grab that crayon and get going!
