Coping: planning ahead
Step-By-Step Plans for Managing the Future
Alzheimer's disease didn't develop overnight, and you don't need to cope overnight. Just take things one step at a time. If you're confused or frustrated about anything, remember that there's a world of resources at your fingertips.
Get a diagnosis.
Don't assume that it's Alzheimer's. Have a physician make the medical assessment. The earlier you get an accurate diagnosis, the more options you have for treatment and for planning.
Ask your doctor about treatment options.
A list of questions to ask if you have Alzheimer’s:What can medication do and what are my options?
How do I know if a medication is working?
Are there any clinical trials that would make sense for us?
For information about clinical trials, visit the National Institute on Aging's Web site at www.alzheimers.org/trials/index.html
For caregivers: create support for yourself.
You'll be much more effective and helpful if you're healthy and happy. Professionals are standing by to help you find the right group. A few to consider:
1. The Alzheimer's Association: 1-800-272-3900 (open 24 hours).
2. The Area Agencies on Aging Hotline: 1-800-677-1116.
3. A doctor, nurse, social worker, psychologist or clergy member who you trust.
4. Any faith-based organization that's important to you.
Call in the troops.
Talk to your friends and family, and let them help you. This is not the time to be a hero or a martyr; Alzheimer's is bigger than one person should handle on his or her own. Enlist the help that you will need.
Consider finding a Geriatric Care Manager (GCM)
GCM's can help you with a variety of planning issues including arranging care services, acting as a distance care liaison, counseling, reviewing finances and determining assistance eligibility. To find out more or to locate a potential care manager, visit the National Association of Professional Geriatric Care Managers online at http://www.caremanager.org/ or call 1-800-243-5656.
Check out a few online support groups and connect with other caregivers.
Some to consider:
The Alzheimer's List at www.adrc.wustl.edu/alzheimer/
The Eldercare Chat Form at http://eldercare.infopop.cc/6/ubb.x
The Alzheimer's Association Message Boards at www.alz.org/living_with_alzheimers_message_boards_lwa.asp
For Caregivers: Limit the number of things your loved one needs to remember.
Take responsibility for anything that requires memory or complex planning. Keep appointments, take the person places, and find someone to help with tasks like housekeeping and paying bills. Helping the person with Alzheimer’s find a new daily routine is important.
Familiarize yourself with the details of caregiving by reading helpful pamphlets. They're free!
A few recommended pamphlets and their ordering information1. "Caregiver Guide"
To request a copy, call 1-800-438-4380 and order Item # Z169, or
view online at www.alzheimers.org/careguide.htm
2. "Home Safety for People with Alzheimer's Disease"
To request a copy, call 1-800-438-4380 and order Item #: Z172, or view online at www.alzheimers.org/pubs/homesafety.htm
3. "Challenging Behaviors: Special Issues for Family Care"
To request a copy, call 1-800-438-4380 and order Item #: Z124, or view online at www.nia.nih.gov/Alzheimers/Publications/challenging.htm
Get the help you need to ensure financial affairs run smoothly and on time.
If you have been diagnosed with early stage Alzheimer’s, you will need to prepare for the management of your finances. It is important to find someone you trust to assist you with your financial matters. The sooner, the better. For caregivers, it is important that financial and health-care durable power of attorney are prepared and easily accessible.If it's still early in the disease, explain to the person that one of the first things Alzheimer's does is cause problems with calculations. The disease causes people to make and miss mistakes. Ask the person who he prefers or recommends to assist with finances.
If the disease has already progressed, you should still talk to the person before taking action. When you talk to someone in the later stages of Alzheimer's, emphasize the hassles, worries and frustrations of keeping track of complicated finances. Suggest a trusted local person who can help. Then, reassure the person that you will keep her informed and/or involved with any financial decisions.
Locate your loved one's legal and financial documents including:
1. Wills and living wills
2. Durable health care power of attorney
3. Financial powers of attorney
4. Insurance policies
5. Stock and bond certificates
6. Bank and brokerage statements
7. Pension and retirement benefit summaries
8. Social Security payment information
9. Rental income paperwork
10. Deeds or mortgage papers or ownership statements
11. Monthly or outstanding bills
If certain documents, such as durable health care power of attorney, have not yet been made, do so. Visit www.benefitscheckup.org/ to see if you're eligible for special benefits.
Talk to a trusted and knowledgeable local professional to determine how you can afford health care and daily living over the course of the disease.
You might want to use an online management system that consolidates your bills, pays them automatically and informs you of current balances. For an example, visit Paytrust at www.paytrust.com
Find out about the care options in your community. Know your options before you become overwhelmed.
Call the Eldercare locator at 1-800-677-1116 to learn which care options are available in your area. From home aides to adult day programs to assisted living, there are a range of options to explore in addition to full-time home care or nursing home placement. Your decision will depend on your unique situation, including finances, the disease's progression, availability and physical capabilities.
For help deciding what would work best for you, call the Alzheimer's Association hotline at 1-800-272-3900.
Make a list of your biggest remaining questions and worries, and pick the route you feel most comfortable with to get your answers.
Call the experts!Whether you have Alzheimer’s or are caring for someone who does, don't be nervous or embarrassed to ask anything. Chances are, someone else has been through a similar situation. Here are a few great phone resources:
1. The Alzheimer's Association: 1-800-272-3900
For any questions you might have about Alzheimer's, caregiving or where to find help and information.
2. ADEAR (The Alzheimer's Disease Education and Referral Network): 1-800-438-4380
For information on Alzheimer's disease, research and resources.
3. The Area Agencies on Aging Hotline: 1-800-677-1116
For information on how to connect with local aging-related resources.
Search the Web
The Internet is a great way to get the latest happenings in Alzheimer's research and connect with other people in your situation. Our resources page at www.pbs.org/theforgetting/resources provides an easily searchable database of recommended Alzheimer's-related links.
Read Up
If you're the sort of person who likes to read everything you can get your hands on, visit www.alz.org/ResourceCenter/ByType/ResourceLists.htmfor the Alzheimer's Association listing of books and resources by topic.