As if these deeply painful moments aren’t hard enough, there’s the repeated questions. The anxiety and agitation. The wandering. Hallucinations.
There are so many difficult behaviors that go along with an Alzheimer’s or dementia diagnosis, which makes caregiving tremendously challenging. You’re dealing with the loss of the person you knew, he’s fading away right before your eyes, and this alone takes its toll. You’re caring around the clock (one of the most famous Alzheimer’s caregiving books is called The 36-Hour Day for good reason). You’re physically exhausted, emotionally spent. No matter how much you love the person you’re caring for, a person can only handle so much. (And if you’re caring for someone you don’t have a relationship with or someone you had once been estranged from, the task is equally trying.)
What can be done?
Alzheimer’s caregivers must recognize the importance of respite (i.e. taking a break). They must reach out for help instead of trying to do it all alone. They must plug in to support networks, talk to friends, keep a journal, find an outlet for their frustration, sadness, and pain.
When it comes to dealing with the day-to-day issues — restlessness, sleep disturbance, resisting care — this excellent article from Endear’s Alzheimer blog is full of practical advice and insights. I’ll share a few highlights here, but if you’re an Alzheimer’s caregiver (or know someone who is), I highly recommend reading the full post and sharing it with others.
- For wandering/restlessness: Watch for patterns; try to “turn behavior into something productive, purposeful exercise, physical tasks such as sweeping, raking, cleaning.”
- For hallucinations: Don’t tell the individual that what they’re seeing is not there. Instead, “discuss their emotions relative to what they see.” Cover or remove mirrors. Keep rooms well-lit.
- For resisting care: Make the task (bathing, dressing) as simple as possible. “Offer positive reinforcement,” and don’t just rush into the task: “Before you begin to provide care talk first and connect with them.”
Your turn: Experienced Alzheimer’s caregivers, what tips would you share with others?