What Do You Say To Someone With Dementia?

When someone has dementia or any serious illness, there’s a tendency to avoid him – not because we don’t care but because we don’t know what to say. We’re afraid we might make it worse by saying or doing the wrong thing.

It’s true that it can be a guessing game anticipating how a person with dementia will respond to you or how he’ll interpret what you say. But don’t let fear stop you from sharing your concern and affection. If your effort isn’t well received, you can try something different next time.

I’ve seen this poem on several websites but haven’t been able to discover who wrote it; the credit always just says “Author unknown.”

A Poem

Do not ask me to remember.

Don’t try to make me understand.

Let me rest and know you’re with me.

Kiss my cheek and hold my hand.

I’m confused beyond your concept.

I am sad and sick and lost.

All I know is that I need you.

To be with me at all cost.

Do not lose your patience with me.

Do not scold or curse or cry.

I can’t help the way I’m acting.

Can’t be different ‘though I try.

Just remember that I need you,

That the best part of me is gone.

Please don’t fail to stand beside me,

Love me ’til my life is done.

– Author unknown

Beautiful, isn’t it!

But even with this in mind, the question remains: What do you say?

It’s awkward and uncomfortable. How do you get past that?

I used to spend a few minutes praying in my car before going in to visit my dad. I’d say something like:

“Lord, I don’t want to go in there. This is hard. I don’t know what to do or what to say. I need your help. Give me patience. Let your loving kindness and your words flow through me. Give me strength to do the right thing.”

For me, prayer is always a good place to start. I’m curious though; how do you get past that fear and awkwardness so you can “be there” for the people you care about? What helps and inspires you in those emotionally difficult situations?

My daughter and dad at Big Trees State Park

Help! He Repeats the Same Stories Over and Over Again!

If your loved-one’s dementia compels him to repeat statements or questions over and over again, you’re not alone. Unfortunately, all I can tell you is that you just have to listen. And then listen again and again – as if you’re hearing it for the first time.

Saying “You’ve already told me that!” doesn’t help.

You can try to redirect or change the subject, but for the most part, you just have to grin, bear it, and play along. It’s one of the rules in dementia-land.

It’s also one of the gifts.

My dad had a few stories he repeated. He told them in almost the exact same way every time; it was like listening to a recording.

His grandmother had 18 children. Only 12 of them survived to adulthood. Eleven of the twelve got married. Dad remembered the names of all those aunts and uncles, and to prove how good his memory was, he proceeded to recite them all.

Many days, I sat through this rather lengthy story two or three times in one hour. (I’m no saint. Notice I didn’t say I listened to the story every time!)

I tried to distract him and change the subject, but once he got started, there was no stopping him. For whatever reason, he needed to tell the story. The complete story. So I let him tell it – without interruption.

I learned to take a deep breath and put on my “Oh really? That’s fascinating” face until he was done.

Another of his oft-repeated stories involved listing the names and backstory of his entire high school graduating class which, mercifully, only comprised 17 people . . .

Deep breath. “Oh, really? That’s fascinating.”

But here’s the gift.

When my dad’s voice became so weak and unintelligible that no one else could understand him, I knew what he was saying. The rhythm and facial expressions that went with his stories were still there. Having heard them a hundred times already, I recognized enough to respond appropriately and to ask questions – even though I knew the answers.

A few days before Dad went on hospice, he was in the hospital, and I was sitting next to his bed talking with him. A nurse walked in and asked incredulously if I could actually understand what he was saying. I chuckled to myself, looked up at her and then began to tell her about Grandma’s 18 children . . .

As I told Dad’s story, his body relaxed and his face brightened with a smile. (He had a great smile!) If that isn’t a gift, I don’t know what is!

I like to think it gave my dad peace to know that his story – a story that had been so important to him – was being told . . . And, more importantly, that he had been heard and would not be forgotten.

I don’t know why his brain got stuck on certain, seemingly random memories/stories, but I thank God for the patience to listen to them over and over again and for the opportunity to repeat them when Dad couldn’t do it himself anymore.

Yes, the repetitive story syndrome will test your patience, but it’s a test worth enduring. It won’t last forever, and it may turn out to be one of the sweetest blessings of the journey.

One of Dad's aunts: When telling his

When telling his “aunt and uncles story,” my dad always made a point of saying that Aunt Nora was his father’s “little” sister. Then he waited for the obligatory chuckle when the fact was revealed that, although younger, Nora was actually bigger than her brother.