Q. My 72 year-old mother was just diagnosed with Alzheimer’s. I am devastated by the news. I plan on being her primary caregiver. Do you have any advice?
A. Many of us can empathize with how frightening and sad it is when someone we love has been diagnosed with Alzheimer’s disease (AD). It can feel like standing on the precipice of a vast, gaping canyon. It may also feel like a death sentence. Even though people suffering from AD may go on to live for many years, the person we knew and who knew us will inevitably fade. It is not unusual to worry about our ability to cope emotionally and financially. And, it is reasonable to wonder what our love can survive.
Renowned psychoanalyst Erik Erikson framed the central issue of aging as one of striving for integrity, or the integration of one’s desires, successes, disappointments, and lessons learned. Without memories, individuals are deprived of the opportunity to integrate the past, present and future. Life becomes a series of strange, new moments, without emotional anchors or the comfort of the familiar.
As caregivers, it helps to strive to live in the moment and to let go of what was or could have been. Any hope for equanimity comes from cultivating acceptance, learning to take care of ourselves as we care for another; and from savoring the small victories, like enjoying the taste of ice cream together or the simple pleasure of holding hands.
You are not alone in facing this challenge. It is estimated that four million Americans suffer from Alzheimer’s disease, with 370,000 new cases diagnosed each year. One in 10 people over the age of 65 years old and nearly half of Americans over the age of 85 years old suffer from AD. As we baby boomers age, our country faces an epidemic of Alzheimer’s disease. An estimated 14 million Americans will have AD by the middle of this century. Alzheimer’s disease does not discriminate, affecting people from all ethnicities, classes and races. Winston Churchill, Rita Hayworth, Norman Rockwell, boxer Sugar Ray Robinson, and, of course, Ronald Reagan, all fell prey to its ravages.
AD was first identified as a disease in 1906 by German neurologist and researcher Alois Alzheimer. He discovered the disease’s neurological damage upon conducting an autopsy of one of his patients who had suffered severe memory loss and behavioral changes.
AD is a progressive brain disorder that gradually consumes a person’s memory, ability to learn, reason, make judgments, communicate, and carry out normal daily activities. Especially difficult for loved ones are changes in personality and behavior (such as anxiety, suspiciousness or agitation), and even delusions and/or hallucinations. While there is not yet a cure for AD, new treatments are in the works.
Studies show that 70 percent of people with AD are cared for at home. Eighty percent of Alzheimer caregivers suffer from high levels of stress and nearly half struggle with depression. It is crucial that caregivers learn to also care for themselves. Too much stress is not only damaging to the caregiver, but to the person for whom they care.
Some suggestions gleaned from the Alzheimer’s Association for caregivers:
Go for an early diagnosis. Because symptoms may appear gradually, it’s easy to stay in denial and ignore unusual behavior. However, once you know what you’re facing, you’ll be in a better position to manage what’s happening and plan for the future.
Learn about available resources. Start with your local Alzheimer’s Association chapter to get the assistance you need including support groups, adult day care, in-home assistance, visiting nurses, and Meals-on-Wheels.
Educate yourself. You’ll need different skills, knowledge and resources for various phases of care-giving. As the disease progresses, your care techniques will need to evolve with it. When you anticipate and understand Alzheimer’s challenges, it will be easier to meet them fully prepared.
Take good care of yourself. Again, you can’t help your loved one if you are depressed, depleted and/or become ill. Gently monitor your diet, exercise routine, spiritual and social needs, healthcare, and sleep requirements.
Accept what is. Easier said than done, but it is crucial in order to survive the progression AD. For example, if language is no longer an effective way to communicate, work on letting go of your need for words and, instead, focus on non-verbal communication like touch and eye contact. Remember, you cannot control the changes that will inevitably occur.
Tackle legal and financial planning. This includes developing strategies like a durable power of attorney, living will, trust, future medical care, and possible housing needs. Planning now helps to alleviate undue stress later. When possible, involve your loved one before the disease has progressed to a point where he or she isn’t able to participate.
Be kind to yourself. You are only human. You are doing the best you can. Avoid feeling guilty for not being able “to save” your loved one from AD. Give yourself credit for trying to provide good care. If your loved one was able, he or she would surely thank you for your love and many efforts.
For information about the chapter nearest to you, call (800) 660-1993 or go to www.alz.org
