You couldn’t imagine some of the situations and circumstances that participants have shared in sessions of an Alzheimer’s support group that I facilitate. Then again, if you’re an informal caregiver of a loved one or a formal caregiver of loved ones with Alzheimer’s dementia, you probably can. What’s that saying? You’re living the dream.
Many of those situations or behaviors can actually be amusing and that’s a good thing, as I’ve learned over the years that many of my residents loved having a good laugh at my expense. They also enjoyed providing me with a chuckle or two as long as it wasn’t being perceived as mocking or ridiculing them.
Dealing with their behaviors can be an ongoing challenge, especially when their dark side comes out. Recently a woman shared with me that her husband of nearly 60 years had turned into one of the most cruel people she had ever known, and it was breaking her heart. I see this kind of thing all the time. Mom knows just how to hit the caregiver daughter below the belt; the wife knows exactly what buttons to press to upset her soul mate of 50 years, and in both situations, all the daughter or wife have been guilty of is providing the best care and love they know how.
It’s small consolation, when I remind them and you that it’s the illness that’s behind these behaviors. In one of my groups, an attendee said, “my friend is gone, I don’t even recognize her anymore.” I confirmed to her that she was absolutely correct, the disease had taken her friend from her and this was now her new friend. As you would expect, accepting this circumstance takes an emotional toll on caregivers. That’s why there are always a couple of boxes of tissues on the table at these sessions, and that’s OK. It’s also helpful to remember that these behaviors often are not the loved one trying to be cruel and difficult, but an unfortunate form of communication.
If they’re shouting, pushing or name calling, are they actually in pain? If you’ve ruled that out, is their environment too busy with noises and distractions they can’t process? Are they frustrated with a task they can’t perform? Are they in a new environment they don’t recognize? And are you part of the problem by losing your cool and getting angry and frustrated with them and yelling back? Remember, they will take emotional cues from your facial expressions, body language and tone of voice.
It’s critical at these times that you be the voice of reason and act accordingly. Again, if it’s not pain, ask yourself what might be the cause of the anxiety. Remember, you have to join their journey and not be dismissive of their concerns, even if they’re imagined. Deal with them calmly, reassure them, modify or change their environment and be ready to redirect them.
I can’t stress enough how important it is to learn what it is that will get them to, and keep them in, their “happy place.” For that matter, you should always know what things will take them to a “dark place.” Is there a favorite piece of music they enjoy, a favorite TV show or movie they like or a photo album of the family they enjoy looking at? It’s also helpful to have some quick questions you can ask them at the ready that can change their focus. Why did Grandma and Grandpa give you your name? What was your favorite thing to do when you were a child? Tell me about your first job. Why did you join the Navy? If you know these are subjects they enjoy talking about, then you’re on to a very effective approach of redirecting.
If there was ever a work in progress, caring for your loved one with Alzheimer's dementia is it. Just remember to always be calm, patient and caring, and to realize that it’s the illness.
Questions? Email me at firstname.lastname@example.org.
Robert E.P. Elmer III, of Stonington, is a senior care adviser and Alzheimer's care specialist. His website is www.careforcaregivers.org.