One of the ways I have found to deal with my husband Tom’s Alzheimer’s Disease has been through creative writing, poetry and blogging. But it has literally been months since I have written anything longer than an email.
I long for the easy flow of words that has usually occurred, leaving me satisfied that I had captured the essence and the tone of what I wanted to say. I am torn between a need to communicate and a desire to refrain from whining or being a “Debbie Downer.”
I’ve always been a positive person. I’ve always believed in my ability to rise above difficulties and remain strong in stressful circumstances. I’ve sent my share of Facebook posts urging friends to look on the bright side, to think happy thoughts and be one with the universe.
But, at this moment in time, I cannot relate to those expressions, however well meaning. Some of them, in fact, feel as though they mock the very real experience of extraordinary anguish that I and others must face on a daily basis.
I am barely keeping my head above the deep waters of my life at the moment. I want to write something inspirational, to encourage myself and others who are facing the sadness of a loved one’s battle with Alzheimer’s, but it would not be authentic.
I realized this morning that today is the best it is ever going to be…faint encouragement to live in this moment because the next is going to be even more difficult.
Facing my own health challenges is making it even more difficult to find the optimism to care for Tom’s needs and to commit to planning for the inevitable future. Am I strong enough for the tasks ahead? Can I take care of myself while caring for him?
If knowing that you are not alone in the hideous challenge of this disease is at all helpful, then perhaps someone else out there will feel empowered to admit to the rage and sorrow that fills many of their hours. Perhaps it taps the pressure valve a bit?
Against all odds and personal persuasions you go on. You find the strength that seemed buried under years of being the one to make all the decisions, to face all the problems and health issues alone.
On a good day (and they do happen, though less frequently now) we enjoy a light moment, a laugh while playing with the dog, or a tender expression of love that reminds me of the depth of the relationship we have shared for more than thirty years.
Because he does not recognize the magnitude of the loss I have experienced, it makes no sense to tell him how broken my heart is, or how empty I feel. My sole remaining gift to him is keeping his world as unchanged as possible.
If you are reading this and are not personally dealing with an Alzheimer’s patient, may I offer a bit of advice? Avoid platitudes and clichés in expressing your concern. Your friendship and your quiet and thoughtful listening are the most precious gifts you can offer.
Allow, even encourage, venting and tears without insisting on “cheering up”. It will help.
Writing this has helped me. I can face whatever today throws my way. Tomorrow? That’s too far off.
September is World Alzheimer’s Month. Across the globe, 35 million people and their families are affected by dementia. It’s going to take all of us to change these numbers. Visit the Alzheimer’s Association for three easy ways you can get involved and help end Alzheimer’s.