When someone you love has changed: dementia, addiction or illness

With dementia, memory loss can come and go. With addiction, the person you know may seem to return in sober or calm times, then slip away again. Each swing can bring new hope and new grief.

Caregivers may lose the relationship as it was, shared activities, companionship and their own free time, all while the person is still alive.

Losses people name

• A partner to make decisions with
• Conversations about the past
• Plans for retirement or travel
• Someone who looked after you
• Trust that they will be okay

Boss suggests naming the problem: this is ambiguous loss, caused by the illness, not by you or the person you love.

It can feel like a second loss. Their brain is changing, but their love for you was real, and your love for them still is.

The Alzheimer’s Association encourages caregivers to acknowledge all their feelings, including love and anger at the same time.

Anger and guilt are normal. Try not to act on them in ways that hurt anyone, and talk them through with a counselor or another caregiver.

A partner may feel neither married nor single. An adult child may grieve the parent who used to care for them. Both are forms of ambiguous loss.

Boss discusses her six resilience guidelines in a family-friendly way in her book Loving Someone Who Has Dementia.

Both/and thinking can help: “I hope he gets well, and I grieve what addiction has taken from us.” Holding both takes away the pressure to pick one.

Boss’s idea of “adjusting mastery” means easing the urge to control what can’t be controlled, and putting your energy where it can help.

The National Institute on Alcohol Abuse and Alcoholism lists Al-Anon (and Alateen for younger family members), peer-led groups for people affected by someone else’s drinking, and SMART Recovery Family & Friends, a skills-based program with in-person and online meetings.

The CDC uses person-first wording, like “people who use drugs”, which puts the person before the condition.

Try

• “My sister is in recovery”
• “My son has a substance use problem”
• “She is a person who uses drugs, and I love her”

Families often feel grateful that the person lived, and sad about what changed. Both feelings belong.

The Brain Injury Association of America runs a National Brain Injury Information Center at 1-800-444-6443. It is an information line, not a crisis line.

When someone lives with serious depression, psychosis or another long-term condition, families can grieve the plans and closeness they hoped for, while still loving and hoping.

The NAMI HelpLine (1-800-950-6264, or text “NAMI” to 62640) offers information and support for families, weekdays 10 a.m. to 10 p.m. ET.

A partner who used to hike may now rest most of the day. You can miss the old routines without blaming the person who is ill.

Anger is a normal part of grief. Talking it through can stop it from spilling out at the person you care for.

Guilt often follows normal human limits. Setting realistic expectations for yourself is part of good care, not selfishness.

Many caregivers have this thought and feel ashamed of it. It is usually a wish for the suffering and uncertainty to end, not a wish to lose the person.

A smile, a song they still know, a calm afternoon: these moments count, even if tomorrow is harder.

Ideas

• Look at old photos together
• Play music they loved
• Sit together outside
• Share a simple task, like folding laundry

Hope can move to small, reachable things. Planning activities with clear outcomes, like a dinner with a friend or a hobby, can balance the uncertainty.

Writing down stories, recording their voice or keeping their recipes can keep the fuller person close, even as things change.

A simple written plan for who helps when, including time off and respite, protects the main caregiver from burning out.

Keep rituals, but fit them to what is possible now. Younger family members can help come up with ideas.

Things you might say

• “Grandpa’s illness makes him forget. It isn’t about you.”
• “Mom is sick with addiction. It’s not your job to fix it.”
• “You can still love him and feel upset.”

Decisions stalling, tasks piling up, fading friendships and growing family conflict can all be signs the stress has become too much.

A hobby, a walk or a weekly call with a friend can remind you that you are a person with your own needs, as well as a caregiver.

Free, confidential support by call, text or chat at 988lifeline.org.

A trained volunteer will text with you, free and confidential.

Free information and emotional support for anyone affected by dementia.

Treatment referrals and information for people with substance use or mental health conditions, and their families.

Information and support about mental illness, weekdays 10 a.m. to 10 p.m. ET. Not a crisis line.

The National Brain Injury Information Center can point families to resources. It is not a crisis line.

Find A Helpline and the International Association for Suicide Prevention list support lines worldwide.