As someone who is caring for a loved one with dementia, you are intimately familiar with the changes that are taking place in the person's physical and emotional state over time. Watching those changes can be painful, some days more so than others, and it can also feel like an emotional rollercoaster. Your loved one's condition is bound to vary, which requires you to frequently readjust your expectations, reactions, and approaches to his or her care.
From good days to better days to bad days, it is very natural for you to experience a range of feelings and psychological reactions, including shock, denial, fear, anger, hope, frustration, sadness, guilt, uncertainty, and defeat. The way you cope with the strain of witnessing the progression of Alzheimer's disease in your loved one will depend on many things, including your personality, your past experiences with illness and loss, and your support system.
Here are some suggestions for coping with the complex feelings you will experience during this process:
Accept your grief. It is perfectly normal to experience grief and a sense of loss, even while your loved one is alive. This is called anticipatory grief, and there is no easy way through it. It is very common among caregivers of those with Alzheimer's disease and other conditions that typically follow a pattern of decline over time. You won't feel this way all of the time, but when your loved one has a particularly bad day or goes through a period of time in which he or she loses certain functions or abilities, you will probably experience it more intensely. Accept that these feelings are normal, and they will get better in time. You might try joining a caregiver support group so that you can share your experiences with others who are going through something similar and learn about how they cope. Support groups are available in person as well as online.
Gather knowledge. As you care for your loved one, the disease process will be out of your control, and that can be very frustrating and frightening. One way to remain in control is by knowing what to expect. Ask your loved one's health care provider for reading materials and for suggested books about Alzheimer's. There are a number of great resources available online as well. Develop a working relationship with your loved one's physician so that you can involve yourself in the process of care and ask questions whenever you need to. The more you know about the disease, the better prepared you will be to face the challenges that come along the way.
Take care of business. If possible, make financial and legal arrangements that follow your loved one's wishes early on after learning about the diagnosis. At that time, his or her decision-making abilities should be intact, and you can prepare for the future together. Knowing that you are following through with your loved one's wishes will bring you comfort throughout the process.
Take care of yourself. As a caregiver, you may be more comfortable giving help than receiving it. This can be a recipe for burnout while caring for someone with as challenging of an illness as Alzheimer's. Learn to ask for help when you need it. Whether it's getting groceries, running simple errands, or taking over for you temporarily to provide some respite, try to delegate what you can when you can. This will preserve your energy and your physical and emotional strength. You need reserves to keep going!
Also, watch yourself for signs of burnout, such as depression, fatigue, anxiety, irritability, sleep problems, and/or physical health problems such as headaches, ulcers, or high blood pressure. If you're feeling overwhelmed, help from a mental health professional can make a great difference. A psychologist, social worker, or counselor, particularly one with expertise in dementia may be able to provide you with some direction as to how to deal with some of your loved one's behaviors and cope with your feelings during the disease process.
ABOUT THE AUTHOR
Written by Suzette Glasner-Edwards, PhD
Reviewed by George T. Grossberg, MD
St. Louis University School of Medicine
Department of Psychiatry