A journey with dementia is a long, difficult series of adjustments to a new 'normal'. Just as the old saying goes, "Want to make God laugh? Start making plans", there is a truth about living with dementia that sounds something like, "Want to make sure something is going to change soon, and not for the better? Start thinking you've figured out how to deal with things as they are, and that life is now stable once more."
It's not an evil consequence of cocky assurance. It's just the way it seems to be. There always seems to be a new loss just around the corner. A new reality to figure out how to deal with. A new mourning. A new adaptation to make. This adapting eventually leads to a new 'normal'. Which, in turn, morphs into the next loss.
Sometimes the losses tumble into one another, stacking up before old crises have been resolved. Those are the really difficult times. Those are the times of fear and anger, panic--and thoughts of just running away.
As dementia has made itself comfortable in our life, setting up housekeeping and leaving its socks on the floor, it seems that the losses and consequent need for adaptation come faster, and deeper.
It sometimes frightens me when I begin to notice something which would have formerly sent me into a tailspin, and I respond to it with a kind of calm purposefulness that says, "OK, what do we have to do to learn to function in the presence of this?" Don't get me wrong, it is a far better place than days of frozen fear, feeling helpless, crying buckets and hiding in bed all day. But it feels as if I have lost some feeling, sometimes. Become numb. Can't locate emotions appropriate to the situation.
I am a counselor of over 40 years, so I 'know' some things that are nevertheless at times difficult to see in myself, or to apply to myself. I 'know' that the dementia dance is a marathon. I 'know' that a person can't function long-term in a place of panic and despair. I 'know' that for the most part, we humans eventually adapt to what is placed before us in life. I emphatically don't believe that things happen for a reason. I do, however, believe that what happens to us can most of the time be borne, although it almost always takes some growing and a lot of change. All that 'knowing', however, doesn't help the concern I sometimes have regarding my diminishing emotionality. I fear I might be losing something crucial to my central self. I wonder sometimes if it means I don't care. I wonder if I will continue to numb, until I can't feel anything anymore.
My daughter once drew me into a new way of considering this necessary numbness. As I was off on a fear trip of losing touch with my feelings altogether, she asked me how I reacted to my grandchildren. Did I react with feeling in response to them--their actions, their growth, the sound of their voices, their very being? Thankfully, my answer was, "yes, yes, yes, and YES." Ok, thought I. Point well taken.
I still have my feelings. They are still there. But I guess I am learning to protect myself from the pain of dementia, because it is a necessary thing. It helps me to put one step in front of the other. Helps me to keep on keeping on, as the saying goes. Enables me to be a more loving, functioning presence in my husband's life, so that we can walk down this path together and he is not alone with his own fear and loss.
Don't get me wrong. I cried just yesterday while thinking about dementia and our losses. The difference is that my feelings are controlling me a little less as time goes on.
Where are you, or have you traveled, on this path? Do you, sometimes, worry about becoming numb?