Greetings from Alzheimer’s Disease Foundation Malaysia !

Dear Caregivers/Members,

Welcome to Our ADFM National Caregivers Network!

In life, change happens.

A life changing event may be anticipated, planned or more often than not - an uninvited guest. When a loved one is diagnosed with Alzheimer’s, you find yourself thrust into the role of a caregiver, and life as you know it, can cease to exist.

Alzheimer's disease never affects just one person in a family. Your life has changed, too, from your social life and relationships to your goals and priorities. "Changed" isn't even the word - you've gone through a total upheaval, the kind that splits a life in two. In the years before Alzheimer's, you may have worried about the lawn or local politics or today's kids. As an Alzheimer’s Caregiver, your primary worry is about getting through the day.

Once Alzheimer's disease strikes, Alzheimer's caregivers get to witness the craziness that comes with Alzheimer's day in and day out. However, the most frightening fear is knowing that the day will come when your loved one - won't know you—this is the most horrific feeling of them all for an Alzheimer's caregiver!

In the early days of caring, the caregiver deals with a disease that is difficult, sometimes impossible to understand. Welcome to Alzheimer’s World - Don't be afraid or reluctant to step into this new and very different world.

In Alzheimer's World, reality takes on a different shape. Reality in Alzheimer's World is a reflection of what the person suffering from Alzheimer's thinks and believes. It is this reality that you must focus on, not the way YOU think things are, or should be.

Choosing to deny or fight unexpected change means you will struggle all your life. Difficult though it may be, you need to acknowledge your fears, anger, grief, guilt and feelings of being alone and navigate from victim to acceptance.

Consciously embracing the role of caregiver permits you to take charge of your life. It doesn’t make it any easier because there is no more demanding, heart wrenching or patience-trying job than caregiving.

Choosing to take control of your life means making proactive decisions that recognize your needs as well as those of your loved one.

Taking charge is not a selfish act because if you do not take care of yourself, you may not be there when you are needed. You can’t be an effective caregiver for the care recipient if you are exhausted, depressed, resentful or in poor health.

Recognizing that you have options and choices is in the best interest of your immediate and extended family. It is wise to remain flexible and stay open minded when making decisions, but the key to retaining your sanity is to set limits on what you are willing to do without compromising your safety or putting your loved ones at risk.

The first step is to identify your strengths and recognize your limitations. You’re setting yourself up for failure if you attempt to prepare meals for the care recipient and you don’t know how to turn on the oven or set the microwave. A happier option is to ask for support from your friends, family or community resources.

In addition, because your loved one needs to maintain a sense of independence, self-respect and self-control, it is critical to permit Alzheimer’s patients to do as much as possible on their own. Be sure you let the care recipient know that you trust them and appreciate their efforts.

The challenge as a caregiver is to stay the course when your loved one becomes unlovable. Keeping a positive attitude when this happens is essential because your attitude drives your actions. It is also true that your perception of a situation directly influences your attitude.

When a family member ignores you, is argumentative, aggressive, hostile or even violent it is not easy to remain supportive and provide loving care. If this happens to you, try to view the outburst from the loved ones perception. Keep your cool and attempt to understand why he/she is reacting in this way. Listen carefully to pick up on a word, phrase, facial expression or other hint that will help pinpoint the underlying cause of the unwanted behaviour. Avoid taking the outburst as a personal threat or attack.

It is non-productive to respond to anger with anger. However, be quick to seek help if violent or abusive behaviour escalates or reoccurs. Never forget that you have rights as a caregiver and don’t hesitate to stand up for yourself.

When the situation is under control and everyone involved has had a chance to catch their breath and calm down, replay the scene with the intention of identifying what may have triggered the individual’s actions.

Based on your observations, past relationship with your loved one and your intuition, set some guidelines for future interactions such as avoiding sensitive subjects, events or troubling memories and replacing hot button words with more benign or neutral statements. Your objective is to prevent a potentially threatening confrontational or highly emotional environment

Whether you made a deliberate decision to become a caregiver or found yourself in the role because your spouse, parent or adult child was diagnosed with Alzheimer’s disease, be proud of your role as a caregiver - but don’t expect to be super human. Take care of yourself and take a respite as often as you need it.

Someone is depending on you and someone wants you to stay well because they care about you.

FINALLY, the most effective and important of all, is for you to show and to give complete compassion – the tender loving care approach will never fail! The first principle of love for persons with cognitive disability is to reveal to them their value by providing attention, concern and tenderness. Any experienced carer knows that the person with dementia, however advance, will usually respond better to someone whose affection is affirming in tone.

Try it – you will be surprised with the positive results.

Good Luck and Happy Caregiving!
Ong Eng Joo

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5 Frustrating Behaviors of Alzheimer’s Patients … and How to Handle Them

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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