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NOW WHAT DO WE DO?
A family caregivers’ guide to the next steps after diagnosis
When a loved one is diagnosed with Alzheimer’s disease (AD) or a related disorder, everything can seem overwhelming. Family caregivers often wonder what to do and where to go. Providing care for someone with AD is both a science and an art. There are tried and true strategies that work well, and there is a great deal of creativity involved. (In fact, creativity, common sense and humor are key elements of success in caregiving) When caregiving begins, there are some steps for family caregivers to take to make the journey smoother.
Here are the steps:
- Know that you are not alone. There are many people who are walking down the road with you - many people who are also affected by this devastating disease. There are resources available - organizations, books, people and safety products – that can make the journey less difficult.
- Learn all you can about the disease . Read books, search the Internet, attend seminars and talk with other family caregivers and knowledgeable health care professionals.
- Find a health care professional with whom you can work. This person might not be the person who diagnosed the disease. It needs to be someone who understands the progression of the disease and who respects the role that the caregiver plays in managing the disease.
- Arrange regular family meetings. Discuss the diagnosis with everyone involved in the family. Talk together about what needs to be done now and in the future. While people’s responsibilities will differ, everyone needs to be in agreement about the plan of care. If you have trouble reaching an agreement, consider having a mediator or counselor help out.
- Make certain that the necessary legal and financial issues are addressed. This has to do with establishing power of attorney, health care power of attorney, a living will and estate planning. A lawyer who is knowledgeable in elder law and estate planning should be consulted in order to ensure that things are in order.
- Set up a support system for yourself. Assess what emotional resources you have. Who in your family or among your circle of friends would be most supportive? Let them know of the diagnosis and that you need their support. Work with them in finding ways that they can help you. It may just be listening to you, taking over a household task or providing you some relief from caregiving. Make a list of things people could do to help out. Don’t expect that others will know what to do; you need to ask for what you need.
- Make a realistic assessment of the abilities of the person with the disease. Don’t rely solely on what the person says they can do but observe things first-hand. This will give you a sense of what the person’s needs are as the disease progresses. Let the person with the disease do as much as they reasonably can do for themselves. Establish a structured daily routine. Involve them in decisions about their care, if feasible.
- Address health and safety issues. There are ways to make the home environment safer and products that can help you do this. The same is true for ensuring the personal safety of the person with the disease. Also, encourage good overall health habits – e.g. eating well, exercising, reducing stress.
- Find out the lay of the land. What services are available in the community to help with managing this disease? Develop a list of places to contact – e.g. adult day programs, home health agencies and long-term care facilities. Know what is out there so that when the time comes to access help, you will know where to go.
- Acknowledge your feelings. Caregiving itself brings up a mixture of reactions and feelings, including sadness, guilt and anger. There are no wrong feelings to have, and it is important to express them – e.g. by keeping a journal or by confiding in a friend or a counselor.
Also, consider joining a caregiver support group. This can provide you with emotional support as well as information about useful community services and strategies.
- Live one day at a time but also plan for the future. It is important to do both these things. Work on ways to manage and to enjoy each day. At the same time, become prepared for what lies ahead – assess the range of community services available as well as your own emotional resources.
- Take care of yourself. Think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops suddenly or progresses quickly. It requires of the caregiver steady and thoughtful strides and good overall conditioning of the body and of the mind. Learn to recognize your symptoms of stress and take the time to relieve them. Take regular breaks from caregiving right from the beginning. Accept help. Your life and the life of the person with the disease depend upon your caring for yourself.
Revised 11/06
The Alzheimer's Association- RI Chapter
is ready and able to help you.
Contact our social worker to talk over the phone or to set up a meeting.
Alzheimer's Association - RI Chapter
245 Waterman Street, Suite 306
Providence, RI 02906
(401) 421-0008
(800) 272-3900
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