J and I “came out” with her Alzheimer’s disease sometime in 2010. After the diagnosis, there was definitely a period when J didn’t want anyone to know, and I respected that – within reason, reserving a couple of close friends for me to process with.
We are now quite open about it, which has allowed us to experience the way others deal with the news that someone in their orbit is losing cognitive function.
Here are my personal dos and don’t that could be applied to any friend, family member or co-worker who has Alzheimer’s disease or is a caregiver:
DO ask me how I am.
DON’T stop calling.
DO ask J how she is.
DON’T tell us about your aunt or grandmother or boss who had Alzheimer’s disease. And certainly don’t tell us that she was lost and found days later scraped up and dehydrated, or that he punched an aide and was thrown out of his continuing care community, or that she thought her son was her husband. Every course of the disease is individual and J is happy and engaged almost every day. We don’t need to hear your horror story.
DO invite us to dinner or the movies or a show or a museum.
DON’T ask me if J still recognizes me and our children. I know you feel awkward and are trying to make conversation, but if the answer is yes (which it isn’t), how would that make me feel? And if the answer is no, it is just irritating.
DO keep in mind that the course of the disease is individual and manifests in its own idiosyncratic way in each person.
DON’T send me a link to every miracle cure you found while Googling “Alzheimer’s.” (Tip of the keyboard to my new friend, ED, who suggested this one.)
DO your best to accept J the way she is now. There is much to enjoy in her spontaneity and enthusiasm.