When your loved one is diagnosed with Alzheimer’s, you grieve for her — and for yourself.
At first, your role may only shift slightly as you take on small tasks that help life stay on track, making appointments, overseeing medications, etc.
“In Alzheimer’s early stages, you and your loved one can still talk about things,” says Niki Barr, PhD, a psychotherapist for the Center for Cancer and Blood Disorders in Fort Worth, Texas and author of Emotional Wellness: The Other Half of Treating Cancer (Orion Wellspring, 2013). Say we are talking about your aging mother, for instance. “Ask her, ‘How can I help? Do you want me to take care of your appointments and medications? This is new for both of us: What will help you the most?’ Talking these things through will help to keep you on the same page and will reassure her.”
Preparing Yourself as a Caregiver
When your loved one is in Alzheimer’s early stages, you will become the partner who enables life to keep running as normally as possible for as long as possible. But you are also facing a future that requires preparation.
Learn about Alzheimer’s progression. Seek out others to talk with who have been Alzheimer’s caregivers and look into community resources that can help you understand what lies ahead. The Alzheimer’s Association, www.alz.org, offers information about each stage of Alzheimer’s. The National Institute on Aging, http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-fact-sheet, also offers Alzheimer’s information.
Keep a record of changes. Begin to keep a notebook, tracking changes you see in your loved one. “When you keep looking at the facts, it helps you combat denial,” says Barr. “And the notes will also be helpful when you are talking with your loved one’s doctor.”
Join a support group. In the early stages, you may be able to manage your loved one’s needs on your own. But it’s not too soon to organize a support community that can help you, reassure you, and also let you know what’s ahead.
“Your loved one’s diagnosis brings anticipation and concern, and the territory is all new,” says Barr, who recommends contacting a counselor or joining a support group. “You can’t be in this alone.” The Alzheimer’s Association offers a support group locator and a 24/7 hotline. The American Psychological Association, www.apa.org, offers a psychologist locator. Or you can ask your doctor for a referral.
Make financial and legal arrangements. Now is the time to organize financial documents and discuss your loved one’s wishes about medical care and end-of-life decisions. Check on insurance, government programs, community services, and income tax breaks. Also find financial and legal professionals who can advise you. The National Academy of Eldercare Attorneys, http://www.naela.org/, offers an eldercare attorney locator and other helpful information.
Assess home safety. Begin to remove objects like loose rugs or protruding furniture, increase lighting, especially night lights, and get appliances that have an automatic shut-off. Also add grab bars and a walk-in shower to your loved one’s bathroom, if possible. For more information about home safety, go to the Alzheimer’s Association website, http://www.alz.org.
Tell others of the diagnosis. Discuss gently with your loved one how he wants you to tell family and friends, says Barr, who advises being as straightforward as possible with those you tell: “It wastes emotional energy to sugarcoat it. And clarity helps you avoid denial.”
Even as you partner with your loved one to help keep her life on track during the early stages of Alzheimer’s, you will be working through your own set of emotions: fear, frustration, anger.
“You will likely be wondering how the disease will take its course,” says Barr. “And you will worry about how to help without taking over too much.”
And even as you manage the present, you will have to have an eye on the future, beginning to make legal and financial arrangements that will ease later stages when your loved one can no longer handle such tasks.