My mother has dementia and presently has been staying with me for a couple of weeks. One thing I find very frustrating is when people call her or drop in to see her, she seems very well & lucid (which is good) and can carry on a great conversation for a half hour or so. I’m sure people must think I am making more out of her situation than it really is, however, I see a VERY different person after they leave. For the most part, within a half hour of the conversation or their visit, my mother won’t remember anything of their conversation. I’m not quite sure how to respond to people when they tell me how well they think she is doing. Any suggestions?
Oh Sharon, you have brought up something that happens to many and happened to me over and over again. It is a two edged sword because you don’t really want your Mother to be sick, but at the same time you would like people to understand and empathize with what your daily life is looking like. The guilt from “wanting” your Mom to have these symptoms and signs of a horrible disease is understandable but do not sell yourself short. You are with her when her friends are not and see the results from her putting on a good show. It is very common for people with dementia to somehow pull themselves together to carry on conversations and visit with friends and family and then the caregiver will witness the fallout after. Usually, tiredness, even more forgetful or agitated than usual, and sometimes they will seem to slip a little further into the disease.
There really isn’t a way for you to get anyone who hasn’t walked this walk to truly understand the 24/7 toll being a caregiver can take; not just physically but emotionally as well. Watching your Mom have a seemingly “normal” conversation in front of others and then being fully present as she forgets their visit and the conversation is emotionally very difficult. It is a reminder of what is happening and what is still to come. Please try your best to keep perspective of how little you understood before you were staying with your Mom for those few weeks. Then convert that to how her friends see her. I even had someone tell me they thought Jim was fine, maybe the doctor has misdiagnosed him. I wrote about these frustrations on my site.
Stay strong Sharon. We all care and are with you.