PRACTICAL TIPS AND RESOURCES FOR Alzheimer s Caregivers
About 15 million people care for a loved one with Alzheimer s in the U.S. Knowing what to expect and preparing for the challenges of Alzheimer s can help caregivers plan for and arrange the support they will need in caring for their loved ones as the disease progresses. Many caregivers find their role difficult but rewarding. Each person s and family s situation is unique, but having good information can help you be ready for the challenges each stage may bring. Though there is no cure for Alzheimer s, there are treatments available to help with the symptoms, and actions you can take to better manage life with the disease. At each stage of the disease, there are medical and care-related options that need to be considered, as well as safety issues. 1. Seek support from other caregivers. You are not alone! A sense of isolation, a belief that, I am the only one thinking and feeling this way, is a very common idea among family caregivers. However, the reality is that millions of people are thrust into this role and many think and feel exactly the same way that you do. Many family caregivers are hesitant to speak up or share their innermost feelings for fear of being misunderstood. However, speaking up is one of the best ways to reduce feelings of isolation and to relieve some of the emotions you may have inside. Joining a support group can be a safe haven for sharing feelings, a place to make new friends, and find information and resources on how to deal with what lies ahead. It is also a great way to help bring about the changes, which are needed to make the lives of caregiving families much easier. Sometimes she thinks I m her mom, and sometimes she knows who I am but she can t place my name so we ve got a new game plan to not remind her about names and just sort of adapt to who she thinks I am, or where she is. Laura, Caregiver for Mother, 8 Years
2. Take care of your own health so that you can be strong enough to take care of your loved one. Take care of yourself. Caregiving is mentally, emotionally, and physically draining. If you feel your own health and well-being are suffering as a result, be sure to talk to your doctor. Protect your health. Recognize that taking care of yourself is just as important as taking care of your loved one. Schedule brief periods of rest or breaks often. Respite is not a luxury. You need regular breaks in order to stay healthy and strong. Everyone needs a break. Respite care provides a temporary rest from caregiving and in the long run will strengthen your ability to be a caregiver. Home healthcare agencies or nursing homes are resources for short term respite care for your loved one. Believe in yourself. Trust your instincts and let your inner voice guide your decision making. 3. Accept offers of help and suggest specific things people can do to help you. Ask for help. Recognize that this is a sign of strength, not weakness. Get comfortable with the idea of talking about your need for assistance and reach out to someone you trust for help. Engage others to share the burden of caregiving by reviewing and assigning individual responsibilities. Contact your local senior services or Area Agency on Aging. They may be able to help you get support with driving to appointments as well as medication and grocery delivery. Hold family meetings to review the needs of your loved one and divide the responsibilities. Create a list of tasks that need to get done. Arrange for help with groceries once a month Consider using online services to have things delivered Arrange for someone to sit with your loved one for a couple of hours so you can have a break once in a while Ask for help preparing freezer ready meals You have to carve out a little bit of space and a little bit of time to refresh and take care of yourself so you can take care of them better, in a more positive way because you will just burn out. Claudia, Caregiver for Mother, 12 years If we want to go to dinner, it s like, I m putting out an APB and I thank God for text messaging nowadays. I m looking for someone to come take care of mom and dad. Just sit with them for a couple hours so we can do dinner with friends. Vivian, Caregiver for Father, 4 Years
4. Learn how to communicate effectively How to Improve Communication 5. Organize medical and legal information so it s up to date and easy to find. WITH THE DOCTOR Write down your questions and concerns before your appointment. Educate yourself on the different stages of the disease and communicate any changes to the doctor. Ask your doctor about treatment options for every stage of the disease. Your doctor is there to support you but may not have all the answers to your questions. WITH YOUR LOVED ONE Talk slowly and speak in a calm and reassuring tone. Maintain eye contact and use a smile or gentle touch. Be patient and treat them with respect when they repeat themselves or get confused. Connect with your loved one by incorporating familiar music or looking at old pictures. Allow your loved one to communicate completely be careful not to interrupt, criticize, or correct too quickly. WITH YOUR SUPPORT NETWORKS Communicate with your support network and give them updates. You do not have to do this alone! Teach others how to communicate with your loved one. Share tips and methods that work best. Create awareness regarding safety issues. Make sure your neighbors know to contact you if they see your loved one out alone. Patient File Checklist The single most important thing you can do to function effectively as a caregiver is to create and maintain a comprehensive file of information about the person you care for. Some people prefer paper, others electronic, some a combination of both. The important thing is that it is up to date, provides easy access, and can be updated and shared when needed. WHAT SHOULD GO IN THE PATIENT FILE? Medical History Diagnosis Physician contact information Allergies Health history (eg, surgeries, other medical conditions) Medication List Insurance Information Private medical Prescription plan Medicare/Medicaid info Long-term care Dental and vision Legal Documents Living will Durable power of attorney for healthcare (also known as a Healthcare Proxy) Power of attorney for finances Contact information for care recipient s lawyer I found it useful to carry a card with me so if I go to a restaurant or someplace, I slip them a card saying, Please understand that my mother has Alzheimer s. This provides context for my Mother s action and makes it easier and less stressful for everyone to recognize the condition and be more understanding of the situation. I didn t know where to start, where not to start, what to do, what not to do I went online, I got the power of attorney, the DNR and I got those papers made up. Then we took the trip to Social Security. Alice, Caregiver for Sister, 1 Year Judith, Caregiver for Mother, 4 years
IMPORTANCE OF FINDING YOUR Local Resources Reach out for local caregiving support today. Your local community may be able to provide assistance for caregivers, seniors, and their families with a range of programs, resources, and activities. The information below can help you locate local services that support the health, safety, and well-being of your loved one and you. OFFICIAL U.S. GOVERNMENT SITE FOR MEDICARE NURSING HOMES: Medicare.gov This website is an excellent source of information about paying for care, the rights of patients, and nursing homes. The information on the site includes: Nursing Home Compare tool compares every Medicare- and Medicaid-certified nursing home in the country based on a Five-Star Quality Rating scale, which takes into account health inspection results, staffing information, and quality measures. Access this tool at www.medicare.gov/nursinghomecompare Nursing home checklist a detailed checklist for rating nursing homes based on quality of care and more ELDERCARE LOCATOR: www.eldercare.gov A public service of the U.S. Administration on Aging that provides resources and services that can help seniors live independently and stay safely in their homes for as long as possible. You can locate the nearest AAA by visiting www.eldercare.gov or by calling (800) 677-1116. U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES: LongTermCare.gov This site helps with long-term care planning steps for caregivers who are arranging or paying for care. The loss of ability to comprehend finances and care choices is among the signs of dementia. Once symptoms appear, dementia makes the long-term care planning process more complex. U.S. DEPARTMENT OF VETERANS AFFAIRS CAREGIVER SUPPORT SERVICES: www.caregiver.va.gov Provides a number of family caregiver services for veterans and their families. Call the Caregiver Support Line (855-260-3274) to speak with a caring, licensed professional for assistance or to ask questions about eligible services. Actavis Pharma, Inc., an Allergan affiliate 2015 Allergan. All rights reserved. Allergan and its design are trademarks of Allergan, Inc. UNB41541 01/16