Information for Patients and Caregivers

1. Get a diagnosis as early as possible and understand usual patterns of disease and treatment so you know what you are dealing with.
2. Know what resources are available. For you own well-being and that of the person you are caring for, become familiar with resources available in your community. In-home assistance, visiting nurses and Meals-On-Wheels are just some of the community services that can help.
3. Become an educated caregiver. As disease progresses and changes, different caregiving skills and capabilities are necessary. Care techniques can help you better understand and cope with many of the challenging behaviors that occur.
4. Get help. Trying to do everything by yourself will leave you exhausted. The support of family, friends and community resources can be an enormous help. If assistance is not offered, ask for it. And if you have difficulty asking for assistance, have someone close to you advocate for you. If stress becomes overwhelming, don't be afraid to seek professional help. Support group meetings and helplines are also a good source of comfort and reassurance.
5. Take care of yourself. Caregivers frequently devote themselves totally to those they care for, and in the process, neglect their own needs. Pay attention to yourself. Watch your diet, exercise and get plenty of rest. Use respite services to take time off for shopping, a movie, or an uninterrupted visit with a friend. Those close to you want you to take care of yourself.
6. Manage your level of stress. Stress can cause physical problems (blurred vision, stomach irritation, lack of concentration, loss of appetite). Note your symptoms. Use relaxation techniques that work for you and consult a physician.
7. Accept changes as they occur. Patients often require care beyond what you can provide at home. A thorough investigation of available care options should make transitions easier; so will support and assistance from those who care about your loved one.
8. Do legal and financial planning. Consult an attorney and discuss issues related to durable power of attorney, living wills and trusts, future medical care, housing and other key considerations. Planning now will alleviate stress later. If possible and appropriate, involve other family members in planning activities and decisions.
9. Be realistic. Neither you nor the patient can control many of the circumstances and behaviors that will occur. Give yourself permission to grieve for the losses you experience, but also focus on the positive moments as they occur and enjoy your good memories.
10. Give yourself credit, not guilt. You're only human. Occasionally, you may lose patience and at times be unable to provide all of the care the way you'd like. Remember, you're doing the best you can, so give yourself credit. Being a devoted caregiver is not something to feel guilty about. Your loved one needs you and you are there. That's something to be proud of. And if your loved one could - he or she will thank you.