This Is Going to Be Raw — But It’s 100% From the Family’s Perspective

The Literal Wake-Up Call

This morning, I woke to my phone vibrating. It was too early for my alarm, so I rubbed my eyes and looked at the phone. It was my Mom calling.

“I’m scared and don’t know what’s going on,” she said. “They have me in a tiny room and won’t let me go home.”

My dad, who’s become more caregiver than spouse as her Lewy Body Dementia worsens, had already been up — getting her ready, feeding her, making sure she took her meds, and preparing for errands.

Some days, he’s Larry — her husband of 47 years. Other days, he’s an imposter, a stranger, the “mean guy,” or a nice man helping her while her “real husband” is away.

The Situational Wake-Up Call

Rick Henkin once said dementia means “mourning people who are still with us, but parts of them are gone.” We feel that daily with my mom.

We’re wired to help people solve problems: explain it so they understand, physically assist them, remind them when they forget.

But dementia changes the rules. Many of my mom’s recent problems are imagined:

• No one is trying to hurt her.
  
  
  
  
• Dad hasn’t abandoned her.
  
  
  
  
• She’s already been to the doctor.
  
  
  
  
• She is home and safe.

Just last week, she apologized to us for not being able to marry Larry. “We spoke with the Bishop,” she insisted, “and he said it’s just not the right time.” None of this had happened.

One family member tried asking her rationally-based questions. “Why do you feel that way?” “Why can’t you marry Larry?”

This simply doesn’t work. It would have been far quicker and simpler to say, “No worries, Mom! No one expects you to marry him right now.” Then, move to another topic. Sad fact is, in 45 minutes or less, she’ll have had no memory of this delusional concern about marrying someone whom she’s already married. However, challenging it and attempting to rationalize a completely irrational dementia-induced problem only led to digression of her stability for the day.

Helping her up and moving throughout the house works only if she recognizes the helper or accepts help. Even safety precautions — “Let me get your walker” — can be misread as control: “Why won’t this person let me do what I want?”

This morning, she described “being trapped in a small room” — she was sitting on her bed. In her mind, my dad became the villain holding her captive.

The word “remember” is toxic. Trying to convince her of what she cannot recall sparks suspicion: “My Larry wouldn’t lie to me. This can’t be my Larry.”

Our Gratitude

We’re thankful for:

• Local home health, family, and neighbor visits offering relief for Dad.
  
  
  
  
• Doctors who track her decline and prepare us for what’s next.
  
  
  
  
• Insights from 100s of home care owners I’ve come to know over the last decade, Rick Henkin’s Facebook group, and Dave Iverson’s memoir, Winter Stars.
  
  

Your Wake-Up Call

Home care companies have enormous potential to help families like mine — but many connect too late, waiting until families are ready for an assessment. The most impactful agencies build trust much earlier.

Here’s how:

1. Support Guides

Break the client journey into stages and create practical, DIY guides for families to manage as much as they can on their own. Yes, it may delay their hiring you — but it builds trust and loyalty. Post these tools on your website and social channels for people to download in exchange for providing you their email address.

2. Videos

We watch dementia care videos from experts nationwide. If one local agency consistently posted useful, comforting content, we’d go from follower to client more readily than other options.

3. Emails

Use website behavior — downloads, page views, service inquiries — to send targeted advice. Families need this information now, not only after becoming clients.

Training families early in best practices means they’ll already value and trust your methods when they do hire you. Plus, everything you’re teaching them is how you’ll want to work with them.

The REAL Framework for Communication

The struggle is real — so your communication should be too.

R – Reasons to trust. Compassion shown early earns trust beyond testimonials. When families apply your advice and it works, you’ve moved from borrowed trust to earned trust.

E – Emotions to connect through. People don’t care how much you know until they feel how much you care. Every “small win” they achieve because of you deepens their bond with your brand.

A – Address concerns in relatable terms. Speak in the family’s language, not industry jargon. “Relief” may be more meaningful than “respite.” Hygiene might mean confidence to someone who looks well-kempt again, not a checklist of how you clean them up.

L – Lead to their desired outcomes. Every resource, video, or call-to-action should move them closer to what they want most — whether that’s safety, comfort, or restored confidence.

Families dealing with dementia – like mine, or Parkinsons, mobility issues, post surgery concerns, etc. are possibly in the most difficult fight of their lives. You have the expertise to lighten that burden — and much sooner than at that point of desperate necessity.

Kevin Hansen – Owner of Revivify Marketing and author of Branded by Design: Home Care / Home Health Edition works with businesses to escape industry brand traps so they can more effectively capture, communicate with, and convert their right-fit audience.