How to Talk to Someone with Dementia

By Elizabeth A. Havey of Boomer Highway http://boomerhighway.org

I would like to welcome the wonderful Elizabeth Havey today, but before I do I have a little business to take care of. First off, I owe a huge apology to my friend Abby. Last week, when I was thanking all of the wonderful women who took over for me while I was off I completely forgot that Abby was the very first of the “Your Caregiver Stories”. She wrote a powerful piece called “The Silver Lining of Caregiving” and you can find that here. Most of you know Abby as the fun-loving nut at Midlife Crisis Nut, but she is also a wonderful caregiver and daughter to her mom, a wife, a mom, and a good friend. It just goes to show that you never know what is going on in someone else’s world. Now let’s give Beth a HUGE welcome!

My mother and I talked on the phone every afternoon at five o’clock. I shared my life with her and she shared hers with me. We were simpatico on almost every level and as I raised my children, she offered her advice, cheered her grandchildren’s accomplishments and praised me for my choices. What a gift.

When I moved from Chicago to Iowa, we still kept up the five o’clock conversations and she flew to visit me now and again. There were our family visits back to Chicago for holidays and she had a close friend with relatives in Iowa, so the two ladies would drive to see me. It was awesome.

But Mom was aging. When you are with a person frequently, changes are subtle. When it’s infrequent, those changes are striking. Mom was more hesitant, more easily agitated. But the true revelation came with our phone chats. At five o’clock she would tell me something about her day. I’d comment and we’d go to the next topic. Then at 5:05she would repeat the exact same information—a sign of dementia, short-term memory loss. So how do any of us cope?

Rule number one: watch for gradual changes in this person’s ability to communicate, because dementia is a progressive disease. As stated above, dementia usually affects the short-term memory first. And I am not referring to forgetting the title of a book or the name of the nurse at the doctor’s office—that happens for all of us when we need some clue that sparks the memory and suddenly the title or the name is right there. This is memory loss that is consistent and begins to affect daily functioning. Mom would forget to turn off the toaster and the fire department had responded to a smoke detector in her condo building twice. She didn’t tell us this. She told us there was something wrong with her toaster. Sadly, I get that. Here are more examples:

• I would tell my mother exactly when I was coming for a visit, and during the preceding week she would ask me repeatedly the arrival day. When I told her and then asked that she write it down, she would forget to do so before the phone call ended. For a while I mailed an itinerary, but as the disease progressed that didn’t help either.
• When she started repeating messages, as I mentioned above, most times I simply listened all the way through, so as not to hurt her feelings or agitate her. I also tried to gently move the conversation forward. It’s not a good idea to say, “You already told me that,” though I know at the beginning, I did so in frustration.
• When I would visit her, I found many scraps of paper with phrases and words scribbled on them—her attempts to remember things. I have to say, it touched me deeply. Who knows? This could be me someday.

Takeaway: be patient and kind.

The loss of long-term memory usually comes later on, but when it does you will find that this makes conversation with your parent or aunt or friend extremely difficult.

• Conversation relies on memory. It is a web of shared experience, common background and people. If your loved one can only remember what is right in front of her (you in your red sweater with that big black purse) there is no extended conversation.  Or her end of it is a repetition of the same question over and over and you providing the same answer. Q Is that a new sweater? A. Yes, I just bought it.       Q: When are you leaving?  A: I’ll be here for three days.
• The loss of long-term memory occurs over time. It waxes and wanes. Often people with dementia can be more alert in the morning and yet very challenged at the end of the day. For about two years my mother and I could overcome the short-term memory loss and move right to the “old days.” I did much of the talking, but we could sit for an hour and remember my childhood, her parenting, and often memories of people in our extended family. Yes, I often had to coach her, “Mom, I’m talking about Tom. He’s Imelda’s son, you remember Tom.” And she would.
• Then came a day when I was visiting and she did not remember a major event in her life—my father’s death. This was startling and frightening.

Takeaway: be prepared. Know that someday this person you love might not even know you.

Rule number two: be creative, positive and upbeat when communicating.

Each dementia patient is different—some are sweet and docile, some are angry and irritated, some are almost catatonic. And it can change from day to day, even hour to hour—rollercoaster style. Medications are used to affect behavior and help a person cope with dementia. Here are a few tips that might facilitate a visit or daily encounters:

•  Bring her something. A small gift is always appreciated and allows for conversation about that item—warm socks, skin lotions, of course candy (elder folks love sweets as their taste buds are failing too). A flower from your garden, a magazine filled with bright pictures or a prayer card.
• Bring props. My mother had photo albums in her room, but I got into the habit of bringing recent photos of my travels, grandchildren, even my home. We would both sit and look at the photo and talk about what we saw (it replaced the red sweater and the black purse) and this often made for a happy time for at least an hour. But remember that dementia patients are often confused and if your loved one incorrectly identifies people in the photos, you might just have to let it go. You don’t want to increase confusion or cause irritation.
• Bring people. One of the last times I visited my mother my eldest daughter was there with her boyfriend. This was great. It allowed my mother to focus on them and ask them the questions she always asks me. Later, she got very quiet as the rest of us talked—and I don’t really know if she could follow the conversation. But I do know that she was happy just being with us.
• Create an experience; change the environment. Sharing a meal or taking your loved one outside in his or her wheelchair for a walk works well during a visit. There was a café in my mother’s elder home and sitting there helped stimulate her. She would talk about the decorations on the wall and what ice cream she wanted.
• Finally, a few very basic hints: It always helps if your loved one has hearing aids in and glasses on. Speak slowly and distinctly. Always avoid frustration and anger and use words that he or she will understand. Overall, show this person respect.  That will make your visit pleasant and provide the person with a positive, though fleeting, experience.

Takeaway: the present is precious—it’s all dementia patients have. If you prepare yourself for a meaningful visit with this person, you will be rewarded. For as dementia moves one toward the end of life, he or she truly lives in the present. There is little memory of the past and certainly none of what was eaten for breakfast or said by a caregiver. Life is an in-the-moment Zen experience. Help your loved one enjoy it.

A MOTHER’S TIME CAPSULE — stories by Elizabeth A. Havey

Available on  http://elizabethahavey.com ; and

Boomer Highway:  http://boomerhighway.org

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Check Out an illustrated presentation of the book on Pinterest, May 1, 2015