Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really don’t know what to say. I’m not them. I don’t live with or in them. I’m still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And if we don’t know sure for sure, we should ask, we should listen, and we should just be.

Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.” “I’ll be back in five or ten minutes”

Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by other’s attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there any more. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often.

Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really doesn’t need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It’s how we decided to react emotionally to the words we ourselves utter, think about, and tell each other.

We all need to keep constantly reminding our selves and each other of this. We need to enable everyone to be themselves, to understand themselves, to love and to feel loved.  The medical community, society, culture, history are all trying to convince us who we are, and we aren’t - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer.

Perhaps the right answer for me is the wrong way to frame it. I need, we need to find a right answer, the right thing to say for us. We need to stop looking for right and start talking to each other about what meets my needs, your needs, our needs.

~Richard