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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