The first rule: Don’t make them feel bad
“Who are you?” My grandmother Dominga asked me as sadness crossed her face. That question broke my heart. These were the saddest words I’d ever heard from her, sadder than listening to her stories of struggle when she was young. Sad, because I was her favorite apo (grandson). I’m sure no one in the family would contest that, but I can’t believe she forgot me. With teary eyes, I told her my name as I hugged and kissed her on the cheek. Then, she looked back at me, face painted with wonder. Nanay Edis, as we called her, battled with Alzheimer’s disease for almost five years before she passed away at the age of 76.
A kind and generous lola, she was soft-spoken and so patient in raising six grandchildren. She had a genuine smile that even our stubbornness couldn’t take away. But all of that changed as her illness progressed. She began to get angry and agitated easily.
One time, when she was asked if she remembered how many kids she had, she strongly insisted that she was still a virgin maiden. We all laughed, but she got upset. When my mother explained that she had seven kids, she got furious and exclaimed, “Kung gusto n’yo ipa-check up n’yo pa ako sa doctor! (If you like you can have a doctor examine me!)”
What happened may seem so funny for us, but little did we know, that it hurt her feelings so bad. We made her feel stupid. We didn’t know that telling her what was real and making her remember things every now and then worsened her condition.
In a recent webinar about learning the right language and approach to people exhibiting symptoms of dementia, organized by the Filipino American Chamber of Commerce North San Diego, I understood why my lola’s behaviour and attitude changed.
Dementia is a brain failure that results to loss of thinking, remembering, and reasoning. And Alzheimer’s is the most common cause of dementia among older adults ages 60 and above. It is a progressive brain disorder that gradually erases memories, ceases thinking abilities and, eventually, the ability to move. It is incurable for now, but proper care and communication shouldn’t be ignored.
The main speaker Ellen Samson, a certified dementia care practitioner, cleared that being “ulyanin” (forgetful) is not normal when someone ages. It is something we should be concerned about when our aging loved ones start repeating themselves between short minutes, because the moment they lose the ability to recall things, grasp concepts, solve problems, and make plans is when the symptoms begin. Hence, we should know how to properly communicate with them.
According to Ellen, the number one rule is “No Reality Orientation.” You have to understand and ride with their own reality, agree with them if they say the sky is blue even when it’s dark, because they will feel stupid or crazy when they perceive your contradicting response as lying or making things up.
Ellen cited a case where a woman with Alzheimer’s kept on telling everyone that her kids were kidnapped (it really happened in her past). Everybody in the house convinced her that her children were safe but only away. She felt bad because no one believed her. That same day, she died of a heart attack.
Pushing care is also a no-no. They will just resist. “Not because you love them and you would like to make thing easier for them, you won’t let them do things. You have to respect their independence and even their privacy. Whatever motor skills or any capability that they don’t use, they will lose them. Doing things for them is unknowingly making them feel, again, stupid or invalids. They need to feel that they’re in control,” Ellen explains.
If you make them feel senseless and useless every single day, don’t be surprised if they stop talking and socializing. “Constant agitation causes depression. Constant depression causes myriad medical issues, leading to death,” stresses Ellen.
Aside from “No Reality Orientation,” she enumerates a lot of ways to talk and deal with them.
- You have to keep things simple like keeping your statement specific to reduce confusion. There are also situations where you have to give them very few choices so as not to overwhelm them.
- Never ever argue with them. Remember old people feel wiser so don’t treat them like they don’t know what they are saying.
- Don’t pinpoint a flaw. If they use their toothbrush for their hair, just give them a hairbrush but don’t tell them they’re doing something wrong or the toothbrush is not for the hair.
- Never say “remember,” because they don’t. Losing their precious memories is something you have to anticipate and accept.
- If they have hearing problems, better to use sign language or non-verbal cues. Be visual not vocal.
- Repeat the words they say and learn to respond by saying “tell me about it.” For instance, they say, “I want to go home,” even if they are already home, just say, “Oh, you want to go home? Tell me about it.” It will make them feel understood.
- Don’t sound like you’re barking orders. If it’s bedtime for example, say, “let’s go to bed.” instead of “you go to bed.” Don’t treat them like they don’t know what they are doing too.
- And when you realize the words you’ve spoken are hurtful or upsetting, learn to say, “I’m sorry.” I’m sorry, I’m just trying to help. I’m sorry, I made you angry. I’m sorry, I have no right to treat you like that. I’m sorry, this is hard, and I hate it for you.
Their illness may be incurable, but the least we can do is to be patient and make them feel happy through right communication every now and then, day in and day out, until they bid goodbye.