LS Fisher, Alzheimer’s Journey
Alzheimer’s is a disease of losses. The disease progresses slowly, and with an early diagnosis you have time to make financial plans and legal decisions. Planning allows you to express your wishes and helps your family make difficult decisions later.
Living with Alzheimer’s is challenging, but with the support of your friends and family, you should be able to continue many of the activities you enjoy. Physical activity and social interaction will help you keep a more positive outlook.
Learn About the Disease
After your diagnosis, you should learn as much as possible about Alzheimer’s disease. Knowing what to expect will let you put effective plans in place. Ask your doctor if he has any pamphlets or brochures on Alzheimer’s. Contact your local Alzheimer’s Association Chapter for additional information and support groups in your area.
The Internet can be a good source of Alzheimer’s information, but be sure to check timeliness and reliable of the sites you visit. A few dependable sites include About.com, the National Institute on Aging, and the Alzheimer’s Association. The Internet is not a substitute for professional care, and you should consult with your physician before acting upon any information from the Internet.
Alzheimer’s can make accomplishing daily tasks more difficult. You will want to remain as independent as you can for as long as possible. Think of ways to modify tasks to make them easier to complete. Break complex tasks into small, easily accomplished goals.
• To-do lists can help you remember things that need to be done.
• Write appointments on a calendar and check it each day.
• Establish a daily routine.
If you are employed, you need to decide when to tell your employer about your diagnosis. It is important to consider your options. It is likely that as the disease progresses, your job performance will suffer. Notifying your employer gives them an opportunity to modify your job so you can successfully continue employment longer. If safety is an issue, it is imperative to let your human resources department know of your medical condition.
As the disease progresses, work may become so difficult that you need to retire. If you retire and are younger than 65, you should immediately apply for Social Security disability benefits (SSDI). Approval for SSDI may allow you to become eligible for Medicare benefits to help replace any medical plan provided by your employer. Early Onset Alzheimer’s is included under the Social Security Administration’s Compassionate Allowance Initiative which makes the disease eligible for fast-track approval for SSDI and Medicare benefits.
Explore Resources Before Needed
To remain in your home, you might need additional assistance. Don’t be afraid to ask for help and accept it when it is offered. Family and friends are often the first resources that can help you remain independent. Later in the disease, other professionals or organizations can assist you and your family. Contact your local Alzheimer’s Association Chapter for guidance on resources in your area.
Resources to consider:
• Home health: These agencies provide housekeeping services which relieve your care partner.
• Meals on Wheels: It is important to eat regularly and to maintain a healthy diet.
• Support groups: You and your family can benefit from sharing experiences with other people who are living with Alzheimer’s.
• Adult day care: Spending time with other people and participating in activities is a good alternative to being home alone.
Driving is a symbol of independence that begins for most people when they are a teenager. A diagnosis of Alzheimer’s does not mean you immediately lose the ability to drive. Over time, your ability to drive safely will diminish. In the early stages of the disease, you should have the ability to make sound decisions. This is a good time to discuss driving with your doctor and your family to express your feelings about independence versus safety.
How do you know when it is no longer safe for you to drive? Ask a licensed driver to accompany you frequently and honestly evaluate your ability to drive safely. You may tell your family that when they are no longer comfortable riding with you, it is time to stop driving.
The Emotional Impact
Alzheimer’s has an emotional impact on each family member and professional counseling may be necessary to learn coping skills. Each of you must come to grips with the disease in a manner that works for you, but with emotional support from extended family, close friends or support groups, you can help each other cope with this life-changing disease.
Alzheimer’s Association. Driving. Accessed July 16, 2011
Social Security. Compassionate Allowances. Accessed July 16, 2011.