Taking on the role of primary caregiver for a loved one with Alzheimer’s disease is an act of love and sacrifice. You’re giving them your time and other valuable resources, but who is caring for you? The daily routine of your loved one after a diagnosis of Alzheimer’s disease or other dementia is complicated, and even the slightest unexpected change can trigger immense challenges. It’s far too easy to underestimate the responsibility and the amount of knowledge obtained in the role of caregiver. The Family Caregiver Alliance stresses the importance of caring for yourself in order to be able to better care for your loved one.
“The care you give to yourself is the care you give to your loved one.”
Learning the stages of Alzheimer’s, medication regimens, and signs and symptoms of complications is critical to recognizing problems that require medical attention. When a loved one is suddenly acting out behaviors that are far from typical of their personality, it can be unsettling. Learning to cope with each of these behaviors is a difficult matter. The person you’ve loved and respected is suddenly paranoid, shouting accusations and having panic attacks over imagined dangers. How do you keep from taking it personally? The emotional toll it takes is high, and is likely to continue for extended periods of time. Caregivers are often mentally fatigued and in desperate need of care themselves.
One of the most difficult emotional costs of caring for someone with Alzheimer’s or other forms of dementia is the profound change in the relationship you once shared with the person. Role reversal is common, where the son or daughter takes on the role of parenting. Also, a formerly romantic relationship can be altered dramatically, when the person no longer sees their loved one in the same light. There’s no way to fully express the pain and shock of having someone you love no longer even recognize you. The strength and tenacity it takes to maintain the difficult task of care-giving in light of such changes is enormous.
The physical aspects of caring for someone with Alzheimer’s are also extensive. Patients with dementia often pace continuously for long periods of time without tiring. Some even compulsively check doors and knobs, attempting to open them. In such cases, the caregiver can’t risk letting their loved one out of sight for even a moment for fear of them leaving and wandering away on their own. Redirecting a person with dementia from stoves, medications or other potentially harmful chemicals, and exits can be exhausting.
Doug Banks was the primary caregiver of his mother, who was diagnosed nearly five years prior to her death. Even after she was no longer able to recognize familiar faces, she was able to associate his face and voice with comfort and responded well to his care and guidance. It’s not always the case, however, and many Alzheimer’s patients don’t react so well to those they no longer recognize as family. According to Banks, there are times when the caregiver needs to vent or even cry. This is perfectly acceptable, even necessary, but should not be done in front of the patient as it could confuse and upset them. He stresses the importance of taking care of details during the early phases upon diagnosis. Important tasks such as getting the patient signed up for Medicare, handling legal issues such as obtaining power of attorney, and looking into nursing homes should also be handled early in the process.
So how can we help? If we know someone who’s caring for a loved one with Alzheimer’s disease, Mr. Banks suggests offering to do the little things can make a big difference. Performing tasks that are time-consuming will free them up to provide better care for their loved one.
“Offer to mow the yard, clean a flowerbed, or even bring a meal or a plate of cookies. These little things make a big difference.”
The importance of caring for the caregiver cannot be emphasized enough. Assistance and resources can be found through organizations such as the Alzheimer’s Association as well as community or hospital-based education systems and support groups. If you’re caring for someone with Alzheimer’s, make certain you’re also taking care of you.
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