A Caregiver’s Guide to the “New” Normal
When you become a caregiver for a loved one with Alzheimer’s disease or dementia, your life changes drastically. From often-repeated questions to bizarrely compulsive behaviors to personality changes, you must deal with many bewildering, frustrating, and worrying behaviors…and you must also face the knowledge that your loved one’s condition is degenerative (and ultimately fatal).
No two cases of dementia are the same, but many do share similar characteristics, and there are practical ways to deal with so-called “problem” behaviors. Here are five of them, as well as how you can most effectively respond:
PROBLEM: Compulsive Behaviors (Dad keeps taking everything out of his wallet and putting it back in.) Your loved one may constantly check to see if the door is locked, empty or rearrange wallets or purses, pack and repack clothing, etc. These things are all manifestations of anxiety. The patient knows he has something important to remember but has forgotten what it was...and this causes his repetitive behaviors. The “big four in anxiety” are the basics for all of us: food, shelter, clothing, and family, and it’s not surprising that many compulsive behaviors revolve around these issues.
SOLUTIONS: First, ignore the behavior and remember that although it seems strange to you, it’s probably not doing any real harm. Giving cease-and-desist advice to your loved one will only spark stress and arguments. Plus, if a behavior isn’t reinforced, it may stop. In general, do all you can to help the patient cope with his anxiety. Speak in a calm, gentle voice, and don’t be afraid to touch or hug.
PROBLEM: Repeating (My wife asks me the same question over and over again, even though I answered it—yet again—not five minutes ago.) Alzheimer’s and dementia are diseases of forgetting. As these illnesses progress, patients live increasingly “in the moment,” and they lose the ability to think and process information. For someone in this situation, repetition—whether it’s asking a question, stating a fact, or telling a story—is comforting.
SOLUTIONS: It’s usually best for everyone if you answer the same question or listen to the same story again and again. It doesn’t hurt you, it helps your loved one, and it can prevent much more serious episodes of agitation, confusion, or aggression.
PROBLEM: Wandering (My husband walked out the door and was halfway down the street before I noticed!) When people wander—whether they’re experiencing memory loss or not—it’s usually because they’re looking for a safe or comfortable place. Your loved one might be seeking a bathroom, a person or place from his past, or relief from boredom or pain. (Or he may have simply become confused while getting the mail.)
SOLUTIONS: Whether your loved one has a history of wandering or not, buy him a Safe Return necklace or bracelet through the Alzheimer’s Association. You might also change locks, install a security system in the patient’s home, or make use of baby gates. Again, making your loved one feel secure is paramount, so don’t call attention to any changes you may make in the living environment. And pay special attention to making sure that he doesn’t wander away during outings.
PROBLEM: Hallucinations (My father keeps talking to someone who isn’t there.) A hallucination is a misperception of reality, often sparked by changes in the brain that cause the patient to see, hear, feel, or smell something that no one else does. I recall a client, Max, who loved to care for and play with his cat, Morris. The only problem was, Morris didn’t exist…and Max’s hallucination was driving his wife, Alice, crazy!
SOLUTIONS: In the case of Max and Morris, I advised Alice to change her attitude about the imaginary cat. Instead of letting Morris upset her, Alice realized that the cat wasn’t hurting anyone and was making Max happy—plus, he didn’t shed, make noise, or make a mess. If your loved one’s hallucinations aren’t doing any harm, do your best to live with them. And warn visitors in advance so that they don’t inadvertently exacerbate the situation.
PROBLEM: Sundowning (My wife gets agitated and starts trying to find her own mother every day in the late afternoon.) Many Alzheimer’s and dementia patients perceive their environments differently as the light begins to fade toward sundown—and this sensory confusion can cause them to become anxious, paranoid, or aggressive. Understandably, sundowning is frightening for the person whose world seems to be becoming more menacing by the minute. In her eyes, the light pole outside the living room might become a threatening intruder, and she will begin to look for a safe place.
SOLUTIONS: There’s very little you can do to convince your loved one that the reality she’s experiencing isn’t accurate once she has worked herself into an agitated state. However, you can take steps to decrease or avert sundowning’s effects. Stick closely to a daily routine, and start turning on lights mid-afternoon. Also, encourage your loved one to be as active as possible during the day (and thus tired toward evening) and to sit in the sunlight for at least 20 minutes to reset circadian rhythms.
Remember, you can’t change the progression of the disease, but you can take steps to minimize the stress both of you feel as a result of behavior changes. And while many of these changes can be difficult to deal with, that doesn’t mean all the joy is gone. You can have a positive impact on the patient’s quality of life—and you can definitely still enjoy special moments with your loved one.
(Source: By Nataly Rubinstein - HelthNewsDigest.com, 6 October 2011)
Nataly Rubinstein is a licensed clinical social worker and a certified geriatric care manager specializing in Alzheimer’s disease and other dementias. She is the author of Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, www.AlzheimersCareConsultants.com).
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Sunday, 9 October 2011
5 Frustrating Behaviors of Alzheimer’s Patients … and How to Handle Them
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