DEAR DOCTOR K:
I do my best to care for my mother, who has Alzheimer’s disease. But I often feel guilty and frustrated. Can you help me change my outlook — for my sake and my mother’s?
Fortunately, I never had to face the challenge that you face, as both my parents died while in full possession of their faculties. But many of my patients and friends are experiencing what you are going through. And like you, they often feel guilty and judge themselves harshly.
The sad truth is that today there is little anyone can do to fully prevent the slow decline of someone afflicted with Alzheimer’s. As I look at the status of research on the disease, I’m an optimist. I think some powerful ways to prevent and treat the disease may well be discovered in the next 20 to 30 years.
As a caregiver, there is only so much you can do. And even when you’re doing everything right, a person who is not in her right mind may not appreciate what you’re doing. When that person is someone you love, that’s really hard to deal with.
In her helpful book, “Mindfulness Support for Alzheimer’s Caregivers,” my Harvard Medical School colleague Dr. Gail Gazelle helps guide caregivers back to physical and emotional health so that they can continue to care for their loved ones while preserving their own well-being.
Dr. Gazelle offers lots of practical advice, tips and exercises to help you reframe your thoughts. Your circumstances might not change, but your ability to control the way you experience your circumstances can. Here are a few examples:
- GUILT. When your loved one has Alzheimer’s, the guilt can seem endless. You feel guilty that you don’t visit often enough, or that you don’t do enough. You feel guilty about things that you did or didn’t do before the disease took over. When you experience guilt, ask yourself: In what ways can I replace my guilt with awareness of the good things that I’m doing for my loved one?
- THE PRESENT MOMENT. Experience what’s happening right now, without labeling or judging it. Don’t dwell on the past or worry about the future. Enjoy the view from wherever you stand. It decreases worry and stress.
- MOMENTS OF JOY. During the most trying times, we sometimes find moments of joy. With Alzheimer’s, such moments may be small but significant: a smile of understanding. Your mother’s cooperation while getting dressed. A caress that takes you back to earlier years. Hang on to these moments by keeping a journal describing the times when you feel a strong sense of joy. Describe what made the moment so joyful.
Be a source of reassurance and what you think may be happy memories. Touch your mother the way you always have. Sing a song she loved, and try to get her to join you. When you remind her of what she loved, you can bring both of you a measure of peace.
(This column ran originally in October 2013.)