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

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3 responses to “What Do You Say To Someone With Dementia?

  1. The most helpful encouragement that I received while walking alongside my Dad and his dementia was “Meet him on his journey.” It looked differently each time that I saw him yet that slogan helped me to check my expectations and join him where he was at, during that moment specifically.

    Thank you Susan for your post. Covering life with prayer changes everything and is my favorite place to start any activity.

  2. The poem IS very beautiful and encouraging; encouraging to visit and continue visiting. I wonder if the visit and contact is more pleasant than not. What will I want if lucky enough to live until having dementia, Alzheimer’s, short-term loss, senility, etc? Knowing would help my contacting moments; visits, calls, and writings. Probably half the time my contacting moments seem mutually pleasant; more-so when short (one-hour or less), arriving, and leaving. When contacting moments are longer, especially after late afternoon within four-hours of bedtime, very little time seems mutually pleasant.

    Probably more important to me than how pleasant, what endures of the visit? Why is that more important to me? Let me use a medicine analogy to answer. Some medicines are required daily, twice daily, every 6-hours,…or continuously. So, medicine is important and endurance probably plays crucial role; too little or too much is “bad.” Is contact the same; daily, twice daily, every 6-hours,…or continuously? Just like by patient, I’m sure it varies by person, condition, stage, and environment (family interplay and institutional personnel, personality, rules, etc.). What will I want if lucky enough to…

    I look forward to “Reply,” especially for child/parent relationships with the short-term memory condition on the parent. (Contrary and suggestive replies are also encourage.) Thank you in advance.

    Susan Angel McKee, thank-you for the blog.

    • Like you, I found that visits/talks with my dad were most “positive” when they were short. He would be pleasant and easy for 30 to 45 minutes. I think it was so much work for him – because he was trying so hard – to be “normal” that after a half hour or so, he got tired, frustrated, confused, angry, etc and it went downhill from there. Pretty much every time.

      It’s hard when you live far away and you have to travel a long way to spend time together. Naturally, you want your visit to be longer than a half hour (or whatever the timeframe is for your dad.) My guess would be that, if your staying for several days, it might work best to take long breaks throughout the day, so Dad has time to rest and recover. I know it seems like it would be nice to spend all day with him, but that might not be possible anymore.

      You have to be aware and flexible. Dementia tends to be a moving target. As soon as you think you have it figured out, it changes, and you have to figure it out all over again.

      As for whether or not he remembers your visits . . . I think that maybe it doesn’t really matter. I’ve heard that even though a person with dementia doesn’t remember WHY he’s feeling happy, he still feels happy (or angry or any other emotion). In other words, he may forget you were there visiting with him, but if he experiences love, joy, peace, etc while you’re there, those emotions stay with him. In any case, a brief smile is better than no smile.

      Thanks for your comment. I look forward to hearing from you again.

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