Caring for a loved one with Alzheimer’s disease can be both physically and emotionally demanding. “As the disease progresses, the amount of care the Alzheimer’s patient requires rises dramatically, as does the toll it takes on the caregiver,” notes Daniel Murman, M.D., neurologist at The Nebraska Medical Center.
While there are things you can do to better prepare yourself for the caregiver role, the thing to remember is that Alzheimer’s progresses differently in each person, as do the caregiver circumstances and ability to cope with the disease.
“I remember noticing changes in my wife for about a year but I couldn’t put my finger on it,” says Allan Schur, husband of Sharon Schur, who was diagnosed with Alzheimer’s in 2005 when she was just 54 years old. “It took my daughter, who hadn’t seen her for almost a year, to step in and tell me that she needed to be seen by a doctor.”
The most difficult part about being a caregiver is dealing with and managing guilt, notes Schur. “No matter how much you try, no matter how much you do, you cannot change the course of what is always a terminal disease,” he says. “There are no ‘survivor’s walks’ for Alzheimer’s.”
Schur also recommends starting each day as a new day and not dwelling on the past or thinking about what might have been. “The most important day in the life of a caregiver is today,” he says.
While it may sound contradictory, Schur says it is also important to be proactive. “Early in the disease you have to teach your loved one new tricks before they need to use them and while they have the capability to learn.” For example, there are phones where you can insert pictures of a child, friend or caregiver on large buttons so the user can press the picture of the person he or she wants to dial. “By the time I realized my wife needed this type of phone, it was too late to teach her how to use it,” says Schur.
Schur adds other tips. “Early in the disease, note the places you like to go and which ones have family restrooms. This will help you later when your loved one may need assistance.”
Participation in a support group is vital. “You can learn from the successes and failures of other caregivers,” says Schur. “You will be reminded that others are walking down a similar path and learn new coping mechanisms. You will see that you are not alone and that’s a pretty big deal some days.”
And lastly, be proactive about their care, stresses Shur. “I reached a point where I realized that if I continued with this 24/7 job, my loved one would outlive me. Tour facilities while you can and well before you need to place your loved one in a long-term facility.”
“Alzheimer’s is a long and emotional process, and caregivers should not feel guilty about seeking outside resources to assist them whenever possible,” says Dr. Murman. He suggests using resources such as the Alzheimer’s Association and the local Agency on Aging.
Visit the Alzheimer’s Association at alz.org to learn more.