I’m not the type of girl who’s easily embarrassed. Earlier this month, while exploring Ireland with my best friend, there was a makeup incident that resulted in a stained shirt and impromptu shopping trip. I offered to trade; her white crop top was super cute and, in my opinion, the bronzer was barely noticeable. She was mortified. Weeks later, we’re still laughing about our Logan’s detour and her refusal to be out in public with that shirt, even if I was the one wearing it and not her. As silly as it sounds, it got me thinking.
The lessons my loves teach me are uncountable. Some are intentional and others by example. Dementia is known to lower inhibitions, leaving those with the disease more carefree. Dr. David Hilfiker, who is living with mild cognitive impairment, confirms:
“With this disease, much of my fear of humiliating myself has shriveled. When I do something outrageous, I apologize. Most people understand that I’m doing the best I can and that these kinds of things are just going to happen in Alzheimer’s. I’m still embarrassed, I suppose, but I no longer feel humiliated; this illness has given me the great gift of acceptance.”
Similarly, Cary Henderson writes:
“Somehow I learned to cope with it. First of all, you know you’re going to screw up a good many times, so just don’t let it bother you. There’ll be another time to screw up, and there might be a few times when things go right.”
Unfortunately, this attitude doesn’t always translate to caregivers. A diagnosis alone can be enough to spark embarrassment. In the 2012 World Alzheimer’s Report, researchers noted that one in four families hid their diagnosis from others, much unlike those with loved ones fighting cancer. Symptoms, I’ve found, are even more shameful; it’s incredible how many articles there are with tips on how to avoid embarrassing situations (i.e., “entertain friends at home”) and diffuse them. One caregiver suggested passing out cards that read, “My loved one has Alzheimer’s – Please excuse their behavior.”
Humiliation is exhausting. Yesterday afternoon, I had a long talk with a nonno whose wife has dementia. Despite both living in my community, he insists on helping, and it is evident he’s burning out. I was both saddened and confused to hear him say that he can’t bear to see her pick out mismatched outfits or order food she would have otherwise scoffed at. Why? Perhaps her decisions now are not those she would have made when she was well, but why do they embarrass him? His wife is happy.. She is safe, well cared for, and content. Her choices may not align with his, but they’re her own and she should make them. As Dr. Taylor (also living with the disease) confirms, it’s even good for her:
“I appreciate and sometimes immerse myself in the process rather than only or mostly on the outcome. I like doing things. I like and appreciate the doing. Doing is how I know I am alive, and how I appreciate being alive.”
As caregivers, it’s essential to accept that most elements of this disease beyond our control. Stepping into our loved one’s world means not only going with the flow, but also embracing change and ditching shame. Embarrassment is useless at any age and in any country (including Ireland).