My hat is off to all caregivers, but especially to those who take care of the 75 percent of patients with Alzheimer’s disease who live at home. Certainly for the person with AD, being surrounded by loved ones, photos and other memorabilia prevents the disorientation and loneliness of an unfamiliar environment.
For the caregiver, this situation can go on for 10 to 15 years. So it’s no wonder that caregivers are at risk for physical illness, social isolation and financial problems. According to the Alzheimer’s Association, nearly 40 percent of family caregivers become depressed and many find relief only when the wandering off, agitation and bathroom accidents become so bad that institutional care is their last hope.
If I had only one piece of advice to offer, it is this: The person you are caring for is no longer the same parent or spouse or even adult you once knew. You are dealing with someone whose brain damage is such that he or she is really only a child now—an older child at first, but eventually a toddler and finally a baby. Set aside your expectations of what the person could once do. That was the past. Your loved one is in a different reality now. For his or her sake and yours, meet this special person in his or her reality because he or she cannot get back to yours.
There are times, I know, when talking to a person with Alzheimer’s is like going to a foreign country. Maybe you talk louder than usual and use more words to make yourself understood. Forget it. Those reactions are the exact opposite of what you should do. If you recall, you never could reason with your toddlers.
So what did you do? You talked slower. Used simple words and short sentences. Made eye contact and got their attention. Offered brief explanations and repeated instructions exactly. Established a daily routine. Took them by the hand and re-directed them to the next activity. Distracted instead of argued. Smiled and gave hugs or compliments. Offered small rewards consistently for behavior you encouraged.
Like a toddler, persons with AD are full of unpredictable emotions that can rise quickly to the surface. Listen and respond to the feelings behind their words. Think how frightened they are. They cannot remember any new information. Period. So they repeat the same things again and again. They are slow to comprehend. They don’t interpret their body symptoms very well and don’t know when they’re hungry or need a bathroom. Perhaps they don’t even recognize you or know your name.
Naturally you get frustrated and upset. It’s hard to smile and to stay relaxed and calm. But find some release for your stress. Call a friend. Scream into a pillow. Leave the room if necessary. Because when you can be cheerful and go with the flow again, you will lighten the mood for everyone. Be flexible. Do what you can and let the rest go. The goal is to change yourself, not the individual with Alzheimer’s.
Logic doesn’t work with people who have Alzheimer’s, but fun might.
One idea is playing music, specifically their favorite music that they listened to when they were in their early 20s. Music, especially through earphones, arouses memory, boosts cognition and lowers the need for psychotropic drugs. Some people who have not talked for years have even begun to remember—and sing—the lyrics.
Finally, caregivers need to self-care with enough sleep, exercise, good food, plenty of fluids and medical check-ups. We all need time to relax with slow deep breathing, meditation, prayer and activities like yoga. Caregivers need FUN—help from others, time for themselves and a social network they can enjoy.
It’s not being selfish. You’re only a good caregiver if you can care for yourself as well.
About the author: Constance L. Vincent Ph.D. is the author of “Not Going Gently: A Psychologist Fights Back Against Alzheimer’s for Her Mother. . .and Perhaps Herself.”The book is a unique, moving combination of scientific and personal perspective for caregivers and individuals who want to prevent AD. It reveals the AD journey of Dr. Vincent’s mother, now 95, and best practices for her care. See more about the author and her book at DrCLVincent.com.