The Longest Goodbye: A Guide to Dementia Care & Roger’s List

Besties, Let’s Talk About "The Longest Goodbye" (And Why Roger’s List is Pure Gold) 😭❤️

They call dementia "the longest goodbye," and honestly, the math checks out.

It is a completely different kind of grief. You’re not just losing someone once; you’re losing them in slow motion during  the diagnosis, as their memory starts glitching, and eventually when their physical body prepares to exit. The timeline they’re living in starts to blur, and their brain is operating on a totally different wavelength.

But here is the main thing: beneath the confusion, the soul of the person you love is still 100% in the room.

Recently, a lovely Facebook neighbor named Roger from Meadowvale Village shared a post on his timeline. It’s a list of 22 boundaries, wishes, and reminders he wants his family to literally tape to his wall if he ever gets dementia.

It is a beautiful, raw, zero-nonsense guide on how to actually partner with someone navigating this, instead of treating them like a project to be managed. Let’s break down Roger’s blueprint on how to protect their vibe, their dignity, and their peace.

1. Respect My Autonomy (Stop Infantilizing Me)

Just because someone’s brain is playing on hard mode doesn't mean they want to be treated like a toddler. Roger is very clear about keeping his independence intact.

• Talk to me like an adult: "Don’t talk about me as if I’m not in the room. And don’t treat me like a child—talk to me like the adult that I am."

• Let me feed myself (even if it's messy): "If I can no longer use utensils, do not start feeding me. Instead, switch me to a finger-food diet, and see if I can still feed myself."

• Let me keep my hobbies: "I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends. Tune in Google or Alexa to my favourite tunes."

• The golden rule: "At the end of the day, treat me the way that you would want to be treated."

2. Step Into My Reality (Don't Gaslight Me)

If a loved one’s brain has created a different timeline, trying to drag them back to "reality" is just going to cause massive anxiety. Meet them where they are.

• Embrace my world: "If I think my dead friend is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it."

• Drop the arguments: "Don’t argue with me about what is true for me versus what is true for you."

• Don't pop quiz me: "Every time you enter the room, announce yourself: 'Hi, it’s...' NEVER ask, 'Do you know who I am?' That causes absolute panic."

• Give me grace: "Don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault. And if I am not sure who you are, please do not take it personally. My timeline is confusing to me."

3. Protect My Vibe (Comfort, Snacks, & Music)

When the logical brain gets tired, sensory comfort is the ultimate love language.

• Queue the playlist: "Make sure I always have my favourite music playing within earshot."

• Preempt the hanger: "Make sure there are plenty of snacks in the house. Even now, if I don’t eat, I get angry (hangry). And, if I have dementia, I may have trouble explaining what I need."

• Validate my feelings: "If I am sad or anxious, hold my hand and listen. Do not tell me that my feelings are unfounded."

• Decode my stress: "If I become agitated, please take the time to figure out what is actually bothering me."

• Ask for my stories: "Ask me to tell you a story from my past."

• Pardon my clutter: "If I like to pick up items and carry them around, help me return those items to their original place."

4. Connecting Beyond Words (The Energy Check)

As language-processing starts to tire out, trying to communicate with complex sentences can feel incredibly frustrating. But there is a language that never fades: the language of energy, touch, and presence.

This is where gentle touch, hand massages, and Reiki (energy healing) come in.

Reiki bypasses the confusion entirely and speaks straight to the nervous system.

• The Intentional Hand Massage: Use a calming scent like lavender, give  a gentle hand massage. Ground your own energy first to keep us all calm.

• Hands-On Reiki: If I am still comfortable, gently place your hands on my shoulders, upper back, or over my heart to melt away tension.

• Hands-Off / Distant Reiki: If physical touch overstimulates, just sit quietly in the room. Holding a peaceful, loving space can shift the entire room's energy and quiet anxiety.

5. Keep Me Close (And Release the Guilt)

Caregiver burnout is real, and the guilt can be heavy. Roger wraps up his list with a massive, loving boundary for his family.

• Keep me invited: "Don’t exclude me from parties and family gatherings. I still like receiving hugs and plenty of laughing."

• Visit me: "If I live in a dementia care community, please visit me often."

• Forgive yourself: "Don’t feel guilty if you cannot care for me 24/7. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live."

"Remember that I am still the person you know and love." — Roger

If you are walking this path with someone you love, save this list.

When we stop fighting the disease and start partnering with the beautiful soul who is still very much there, the struggle softens. We can finally stop fighting their reality and meet them with compassion, patience, and trust.

Shoutout to Roger from Meadowvale Village for dropping these incredible gems of wisdom. 🌸❤️