People have called Alzheimer’s disease and other forms of dementia “the long goodbye.” And it is tough slowly saying goodbye to your loved one every day, the loved one — the wife, the husband, the son, the daughter — who slowly stops recognizing you.
Nancy Turco, executive director of the memory care center Arden Courts, has been working with people with dementia and Alzheimer’s for more than 25 years. She serves as an ambassador to the national Alzheimer’s Association, representing the Capital of Texas chapter.
She emphasizes the importance of keeping people with the disease active and engaged. She’ll talk about how to do that at an AGE of Central Texas workshop on Jan. 21.
It’s important for the activities to be about the process, not the end result. People with Alzheimer’s need ways to participate and be part of a community and not be judged on how they are doing. You don’t say, “Oh, no, you did that wrong” or “I got it” and push them aside if they haven’t folded the towels in the way you wanted them folded. You simply thank them and later refold the towels when they aren’t watching.
What you’re trying to avoid is the depression that often comes in the early stages of Alzheimer’s, when your loved one no longer feels useful and knows what’s happening to them. “Everyone needs to feel needed,” Turco says.
At Arden Courts, Turco often gives the residents small jobs. Some even think that they work for her and have asked her about their paychecks. (The response is always that she uses that new method of payment called direct deposit, and it’s been deposited in their accounts.) “We keep a sense of humor about it,” she says.
That might seem like a bunch of lies, but Turco calls them fiblets, and those fiblets are important to keep them active, not shame them and not have them worry.
Fiblets are part of the overall rule that you don’t argue with a person with Alzheimer’s. You always agree and you meet them where they are. That means that if a husband is looking everywhere for the wife that has been dead 10 years, you just say, “I haven’t seen her,” or, “Let’s go get a snack while you wait for her.”
“You have to live in the moment,” she says.
It’s really important not to give them truth that would be hurtful. One resident, who looked for her dead husband every morning, became difficult when she was in the hospital and someone told her that her husband had been dead for years. It was like she was grieving him all over again.
Turco quotes Austin neurologist Dr. Ronald Devere, who often says, “Having dementia is like the first day of school every day.” You worry about what are you supposed to wear, where are you going to have lunch, where are you supposed to be, what’s going to happen next.
Never use the words “Do you remember?” because the answer is, “No, I don’t,” and they feel bad about that. Instead, ask them to reminisce with you about an event that happened or things you used to do with them.
With any activity, give simple instructions. If you want to involve them in a decision, give them two or three choices that are all good choices. And if you have a preference, always give the choice you want last, because that’s the one they are most likely to remember.
Avoid doing things that could be upsetting, such as listening to or watching the news. They might not remember what decade they are living in. Turco had one resident who watched a story about a fire in a subway station, and that resident immediately became upset because he thought his father, who worked for the subway when he was little, might be caught in the fire.
Here are some great activities that you can do with them:
- Easy chores like folding the clothes and cutting coupons.
- Puzzles, especially ones that don’t have a lot of pieces (but avoid having puzzles that look too babyish. These are adults.)
- Cooking together (though you control the dangerous aspects).
- Exercise, like going for a supervised walk outside or doing chair exercises (Turco has created two DVDs of chair exercises set to older music).
- Easy sports like indoor bowling.
- Singing, dancing or listening to music, especially familiar music from their youth.
- Reading to them.
- Writing, even if it’s just signing their name.
Meaningful Activities for Persons with Dementia
10 a.m. Jan. 21
AGE, 3710 Cedar St.
Register at 512-600-9275 or online at tinyurl.com/AgeJanuary2017.
Find more information and stories about caring for a loved one with Alzheimer’s disease or dementia on austin360.com, including: