Regardless of who in your life has Alzheimer’s, once you hear of the probable diagnosis – your attitude towards the disease changes. We all know it’s a horrible and devastating disease. When we hear of a friend, colleague’s or even an acquaintance’s family member who has it, we are sympathetic and express our heart felt sadness and concern. But when it’s someone who is close to us and/or our family member, it strikes a different chord.
Being a nurse, I realize that this is true for just about any devastating disease. But when we first hear, “Alzheimer’s”, our thoughts, more often than not, go to a fear that the loved one will, at some point, not recognize any of their loved ones including themselves. With that thought, one might think that our fears are selfish.
While the thought of not knowing my children (if stricken with Alzheimer’s) strikes a fear so deep in me that I can’t put it into words, I think I find some comfort in the thought that I would soon be incognizant to the world around me and find solace in knowing I’d be lost in the world that one goes to when stricken with the disease. But the thought that I could be face to face with my own mother (if she were to ever be stricken with Alzheimer’s), for example, and not be able to see and feel the connection of mother and child, is a pain that I wouldn’t be able to hide from. It’s a pain that I couldn’t escape and that is terrifying to me – as I am sure for most people at that thought. So to feel one’s own fears when it’s someone else’s disease makes you wonder if it is a selfish thought.
The definition of selfish, according to Merriam-Webster: having or showing concern only for yourself and not for the needs or feelings of other people. Then the answer, in my opinion is – no. I don’t believe that one is to feel that they are selfish when wrestling with their own fears at having lost their identity in the eyes of their loved one. Because, although we are worried about the day when our loved one can’t identify us, we are genuinely worried for them as well. Therefore, the feeling of guilt (which arises from feeling that one might be selfish) should be allayed in knowing that we all have needs during a time of devastation, no matter who the actual victim is…because we are all victims when Alzheimer’s strikes.
As long as we are walking the road with a victim of Alzheimer’s, we too will suffer. And that’s ok to talk about. It’s ok to have needs of our own. It’s ok to ask for support. It’s ok to think of yourself and your own feelings when your heart is breaking. But more importantly its ok to have the discussion(s) now. Now when no one around you is sick.
Give your colleagues, friends, and/or family the “o.k.” to feel whatever they may feel if you are ever incapacitated with any illness. Ask for the same from them. The conversations need to be done, well in advance of receiving any diagnosis so as to make it easier for the ones who are, often, denied their own grief because they aren’t the one actually battling the disease.
Because when it comes to a disease like Alzheimer’s, we are all in the battle. We all play a role and we all hurt.