The Grief of Watching Dementia Steal Someone You Love | Gray Hairs & Glory

Gray Hairs & Glory · Sustaining the Heart Series

The Grief of Watching Dementia Steal Someone You Love

You are not being dramatic. This is real loss.

Lisa’s Birthday Visit

Lisa walked into her mother’s room at the care home with balloons and a card. It was her mom’s 78th birthday.

“Hi, Mom! Happy birthday!”

Her mother looked up from the chair, smiled kindly, and said:

“Thank you, dear. That’s very kind. Do I know you?”

Lisa’s smile stopped. They had talked like this yesterday. And the day before. But today — on her mother’s birthday — it felt different. She sat down slowly in the chair across from the woman who used to do her hair, who taught her to drive, who was the first person she called when she got engaged.

“I’m your daughter,” Lisa said softly. “I’m Lisa.”

“Oh, how nice,” her mother said, already looking away. “I have a daughter named Lisa.”

Lisa walked to the car and cried for twenty minutes before driving home. She knew then that she was grieving — for someone who was still right in front of her.

The Different Types of Dementia

Dementia is not just one disease. There are different types — and knowing which type your loved one has can help you understand what is happening, speak up for them, and be easier on yourself. Each type affects the brain in a different way, and causes different kinds of loss.

Most Common

Alzheimer’s Disease¹

This is the most well-known type. It usually starts with memory problems — losing things, asking the same question again, forgetting names. Over time, it becomes harder to recognize faces, do daily tasks, and even speak. The change is slow but steady. If your loved one no longer knows your name, but their face still lights up when you walk in — that is Alzheimer’s. The heart often remembers longer than the mind.

Most Misunderstood

Lewy Body Dementia²

This type is often not well understood. It can cause a person to see things that are not there (for example, people or animals). It also causes big changes in how awake and aware they are — one moment they may seem clear and present, and the next they may seem far away and confused. They may also have shaking or slow movement, like people with Parkinson’s disease. Not knowing what to expect each day is its own kind of pain.

Affects Personality

Frontotemporal Dementia (FTD)³

This type affects the parts of the brain that control how we act, speak, and treat others. It often begins when a person is in their 50s or 60s. It can change a person’s whole personality. A quiet, loving father may become rude or say things that hurt people. A gentle mother may act in ways that seem very unlike her. She is not doing this on purpose. If you feel like you have lost not just their memory but the whole person — FTD may be the reason.

Step-by-Step Decline

Vascular Dementia⁴

This type happens when not enough blood reaches the brain — often after a stroke or several small strokes. Instead of a slow, steady change, it can feel like steps going down. Your loved one may seem okay for a while, and then after a health event, they are noticeably worse. Each step down can feel like losing them all over again.

No matter which type of dementia your family is facing — the pain you feel is real. It is not less important just because your loved one is still alive.

A Grief With No Name: Ambiguous Loss

Counselors call this “Ambiguous Loss.”⁵ It means you are losing someone who is still physically with you. There is no funeral. No one sends flowers. There is no clear moment when the loss is finished. It is a slow, quiet loss — many small losses happening over a long time.

Because your loved one is still alive, people around you may expect you to be fine. But inside, you are grieving many things:

Shared Memories: You may now be the only one who remembers your shared history — your childhood, your family stories.
Their Personality: The person who was once gentle may become hard to be around. The person who was your partner may now feel like a stranger.
Their Dignity: Watching someone you love struggle with simple daily tasks is a painful and heavy thing to carry.

It Is Okay to Grieve

“I am tired from crying. Every night my bed is wet with tears… My eyes are weak from so much grief.” Psalm 6:6–7

King David knew deep, ongoing sadness. If you are in this season of life, you have permission to:

Grieve While They Are Alive: You are not overreacting. This is a real loss.
Feel Angry: You can be angry at the disease and still be a good person. Even Jesus cried and felt deep pain at the tomb of Lazarus (John 11:35).
Feel Tired of the Role: You can love your parent deeply and still feel worn out by what this disease has taken from your life. Both feelings can be true at the same time.
Pray for Peace: Asking God for a peaceful end to your loved one’s suffering is not giving up. It is often the most loving prayer you can pray.

Where Is God When They Forget Your Name?

This is a question many people ask in the halls of care homes. Here is what we hold on to:

“Even if she forgets, I will not forget you. See, I have written your name on the palms of my hands.” Isaiah 49:15–16

God Remembers What They Have Forgotten: When your loved one can no longer remember their faith, their family, or even their own name — God still remembers them fully.
He Holds What They Have Let Go: Their identity — who they truly are — is safe in God, even when their mind can no longer hold it.
There Is Hope After This Life: One day, your loved one will know you again. The disease that has taken so much will be gone. As 1 Corinthians 13:12 says, one day we will know fully — just as we are fully known by God.

Practical Tips: What Can Help

Go Into Their World: If they think you are their mother, be their mother in that moment. It is kinder than trying to correct someone whose brain can no longer hold new information.
Focus on Feelings, Not Facts: They may not remember who you are, but they can still feel love, safety, and calm when you are near.
Taking a Break Is Not Selfish: You cannot keep giving if you are empty. Day programs and home care helpers are gifts that help you keep going.
Say It Now: Do not wait for a “good moment” to say “I love you” or “I forgive you.” Say it to the person who is there right now. Their spirit can receive what their mind cannot fully hold.

A Prayer for a Hurting Heart

Lord, I am watching someone I love slowly disappear, and I cannot stop it.
I am sad and I am angry.
Give me strength just for today.
Hold on to what they have forgotten.
Remember what they have lost.
Be with them in their confusion, and hold me while I am breaking.
Help me believe in life after this, when all I can see right now is the loss.

Amen.

One Small Step This Week: If you are going through this, do one kind thing for yourself. Take a walk. Call a friend. Sit quietly. You are grieving too — and you need care.

Learn More & Find Help

These books and websites may give you more comfort, information, and support as you care for your loved one.

Books

Pauline Boss, Ambiguous Loss: Learning to Live with Unresolved Grief (Harvard University Press, 1999). The key book on grieving someone who is still alive but feels gone.

Pauline Boss, The Myth of Closure: Ambiguous Loss in a Time of Pandemic and Change (Norton, 2021). A newer, easy-to-read companion book.

David Kessler, Finding Meaning: The Sixth Stage of Grief (Scribner, 2019). Helpful for people going through ongoing or complicated grief.

Rosalyn Carter & Susan Golant, Helping Yourself Help Others: A Book for Caregivers (Three Rivers Press, 1995). Kind, practical help for family caregivers.

Websites & Organizations

Alzheimer’s Association — alz.org. Free helpline open 24 hours a day, caregiver guides, and support groups near you.

Lewy Body Dementia Association — lbda.org. Help and information for one of the least-known types of dementia.

Association for Frontotemporal Degeneration (AFTD) — theaftd.org. Support for families dealing with personality and behavior changes caused by FTD.

Caregiver Action Network — caregiveraction.org. Support, learning, and community for all family caregivers.

Teepa Snow’s Positive Approach to Care — teepasnow.com. Simple video lessons on how to talk to and care for someone living with dementia.

For Your Faith

Amy Simpson, Troubled Minds: Mental Illness and the Church’s Mission (IVP, 2013). How the church community can support families going through mental and cognitive illness.

John Swinton, Dementia: Living in the Memories of God (Eerdmans, 2012). A deep and comforting look at what it means for a person to be held by God even when their mind is failing.

Sources

Alzheimer’s Association. “Alzheimer’s Disease Facts and Figures.” Alzheimer’s & Dementia, 2024. alz.org
Lewy Body Dementia Association. “What Is LBD?” lbda.org/about-lbd
Association for Frontotemporal Degeneration. “About FTD.” theaftd.org
National Institute of Neurological Disorders and Stroke. “Vascular Dementia.” ninds.nih.gov
Boss, Pauline. Ambiguous Loss: Learning to Live with Unresolved Grief. Harvard University Press, 1999.