Quick Tips for Talking to Someone with Dementia

I like lists. This one is about communicating with someone who has dementia. It was given to me at a support group at my dad’s first memory care community. I was new to the journey at the time and was overwhelmed, so I really appreciated its simplicity and brevity. I hope it helps you.

Ten “Nevers” for Caregivers

  • Never ARGUE . . . Instead, AGREE
  • Never REASON . . . Instead, DIVERT
  • Never SHAME . . . Instead, DISTRACT
  • Never LECTURE . . . Instead, REASSURE
  • Never say “REMEMBER” . . . Instead, REMINISCE
  • Never say “I TOLD YOU” . . . Instead, REPEAT
  • Never say “YOU CAN’T” . . . Instead say, “DO WHAT YOU CAN”
  • Never COMMAND or DEMAND . . . Instead, ASK or MODEL
  • Never CONDESCEND . . . Instead, ENCOURAGE and PRAISE
  • Never FORCE . . . Instead, REINFORCE

(The creator of the list was not credited on the handout I received from the staff at Emeritus at Austin Gardens; please let me know if you know who it is.)

People used to get "dressed up" when they traveled on an airplane. This was taken in 1967 when my mom and dad were on their way to Germany.

People used to get “dressed up” when they traveled on an airplane. This was taken in 1967 when my mom and dad were on their way to Germany.

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Crying is Good For You

Dementia will bring you to tears.

The good news? Tears are good for you.

“Being strong” is part of your job description when you have a loved-one with dementia. But dementia is a long, hard journey, and tears come with the territory no matter how strong you are.

A while back, I stumbled across an article on the internet called “7Good Reasons to Cry Your Eyes Out” by Therese Borchard. It says tears “are like a natural therapy or massage session, but they cost a lot less!”

The writer explains that crying releases toxins from the body and also stimulates the production of endorphins, our natural “feel good” hormones. The article gives credence to the old adage that you’ll feel better after a good cry.

In another online article called “The Miracle of Tears,” writer Jerry Bergman reports that “Suppressing tears increases stress levels, and contributes to diseases aggravated by stress, such as high blood pressure, heart problems, and peptic ulcers.”

In other words, if you don’t let those emotional tears flow every now and then, you increase your risk for all sorts of health problems.

So, although I don’t recommend opening the floodgates in front of the person with dementia (He is confused and generally feeling bad enough already!), don’t hold back the tears forever.

If your loved-one lives in a memory care community, I guarantee you the staff there is used to tears and won’t be at all shocked if you “fall apart” in front of them. They may even shed a few tears right along with you.

Otherwise, find a friend or just a private place where you feel safe to let the tears flow. I can’t even begin to tell you how many times I collapsed sobbing in my car after visits with my dad.

During my “breakdowns,” I doubted I could survive another day of my dad’s dementia. But I did survive. And it turns out that allowing those moments of “weakness” actually helped give me strength to endure.

“What soap is for the body, tears are for the soul.” – Jewish Proverb

My dad went through some tough times in his life. He always did what needed to be done, made sure everyone else was taken care of . . . He was as strong as they get, but even he shed a tear or two in its time.

My dad went through some tough times in his life. He always did what needed to be done, made sure everyone else was taken care of . . . He was as strong as they get, but even he shed a tear or two in its time.

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.

Dementia is a Full-Time Job

If you feel like you’re drowning in paperwork, phone calls and all the other “stuff” that comes with taking care of someone with dementia, you’re not alone. It’s never ending.

The challenge is to keep all this “stuff” in perspective and not let it overshadow the person you’re doing it for.

For me, dealing with my dad’s finances and legal issues, educating myself about his condition, figuring out who all his doctors were, and updating family and friends about his situation . . . It was a full-time job.

At the same time, I was heartbreakingly aware that dementia had stripped away my dad’s independence and sense of purpose. He was hurting.

He needed to know he was still valuable and loved. As much as possible, I wanted that to be my priority.

Not that he made it easy! There were days I would have preferred to wait in line at the Social Security office or to balance his checkbook than to visit him and be pelted with his accusations and complaints.

But he was a good, generous, hard-working person all of his life. He deserved to be acknowledged, appreciated and loved – regardless of what dementia was making him say and do on any particular day.

Ultimately I knew that the paperwork could wait; my dad couldn’t.

So, I prayed for patience and strength. I prayed a lot! I had a few “nervous breakdowns” along the way, but I survived.

It’s been several months now since my dad died. I’m still not done with all the paperwork, but I know this too shall pass. In the meantime, I am grateful for the hours and days I was able to be with him.

 

 

My dad with me and our dog Trixi - 1965 or so.

My dad with me and our dog Trixi – 1965 or so.