President & CEO
The doctor has just confirmed your worst fear. Your mother has Alzheimer’s. While the sense of shock is stinging, you knew something was wrong. She had become forgetful. You found her shoe in the freezer and five cartons of milk in the kitchen cabinet. She calls the toaster the “bread-heater.” She fluctuates from being combative and apathetic. And, her driving has become erratic.
This is a very stressful and emotional situation, so how do you tell a family member that their world is changing and will never be the same? The answer is simple: armed with knowledge, sensitivity and compassion. Keep the following in mind when deciding how to handle the news.
Whether it’s your mom, husband, life partner or friend, respect the person’s right to know. Be sensitive to their feelings and emotional state, as well as their ability to remember, reason and make decisions. Be aware that they may already suspect that something is wrong. If you discuss the problem openly, the individual may feel relieved to learn that they have a physical illness.
Telling them early while they are still able to reason, may also allow them to participate in important and very personal medical, legal, financial and end-of-life decisions. This can save you and your family from unnecessary anguish and uncertainty, later, when it comes to figuring out what they would want for themselves.
Consider hosting a "family conference" to break the news. Build a supportive environment by inviting other trusted family members, a friend, a social worker, and a physician who has experience working with cognitively impaired individuals.
Your family member may not be able to understand the entire diagnosis or may even deny your explanation. If so, it's probably best to accept their reaction and avoid further detailed explanations.
Reassure them that you'll be there to provide support and help them adjust. When it feels right, give them follow-up information. You may say, "Because of your memory and other problems, you may have to let people help you more than you have in the past." You don't have to use the phrase “Alzheimer's disease” if you think it might be upsetting.
As the disease progresses, remain open to their need to talk about their illness. They may ask you about working, driving or managing finances. Also, be aware of verbal and nonverbal signs of sadness, anger, or anxiety and respond with compassion and reassurance.
As a caregiver, you, too, will need support to manage your new role. In addition to a wide array of free support groups and social work services, CaringKind offers workshops that help you understand the basics of Alzheimer’s and dementia. Help with legal and financial planning, and long-term care options is also available. Many of our services are offered in Spanish and Chinese.
At CaringKind, our team of dedicated Alzheimer’s professionals are here 24 hours a day, seven days a week to help both you and the person you care for every step along the progression of the disease. Call us anytime on our 24-hour helpline: (646) 744-2900 or visit our website at caringkindnyc.org. No one should ever have to deal with a dementia diagnosis alone.