A Matter of her mind...and my Heart

I'm beginning a new book about my Alzheimer caregiving journey, sometimes peaceful, sometimes not, with my mother in law, Bette. This is the opening paragraph. I'm hoping it helps others to read it as it did me to write it.

I should call this Confessions of an Alzheimer Coach. As I read back on the last 10 years of caring for Bette, I am aware of how much I’ve learned since the beginning, when I thought I knew a lot about Alzheimer care. It was after my father in law died of Alzheimer’s in 1996, that I realized Bette would require more attention. I didn’t know then just how much attention she would need and how little of what she needed she’d be wanting or accept. I confess I was a very reluctant caregiver, only agreeing to become primary caregiver to relieve my husband of a job he was ill-equipped to handle mainly because he loved her too much. His sister, although living nearby her mother, didn’t drive due to low vision and had limited knowledge of Alzheimer’s and the medical systems her mother would need. And so I accepted the position that would prove very challenging, frustrating, frightening in its impact on my marriage, my caring for my own mother and my feeling of emotional well being.
I’m writing this for one reason only; so caregivers can console themselves for the mistakes, the failures in care and the lack of heart for the job of caregiving. And, now one year after her death at 99 years of age, I can stand back and assess what kind of caregivers we were. As a professional, a nurse and owning a business coaching Alzheimer caregivers, I can adopt the professional stance when working with families. I often look very smart and an expert on Alzheimer’s. I have studied a great deal about the disease and caring with Habilitation Therapy approaches. I don’t really believe there are any experts on Alzheimer’s disease; just people who specialize in it. We learn very quickly there is no Alzheimer archetype to go by; no concrete model or typical patient. Each person is unique as he should be. A person expresses this crazy disease out of his experience coping with the world and its challenges. Whatever worked in the past to make a person feel as if they could relate in the world will be magnified in their response to the disease.
Probably the most difficult person to care for who has Alzheimer’s or any related dementia is the independent strong minded person who never felt they needed anybody. They handled life the way they saw it; they coped well, or perhaps sometimes not so well by others’ viewpoint, without adopting anyone else’s way but their own. I coached a man once whose wife had many difficult to manage behaviors. She resisted care, wandered, refused to wear protective underwear for her incontinence, and became belligerent when bathed or dressed. I asked him on our last coaching visit, “Is there anything in this that is positive for you?” “Oh, yes.” He exclaimed, “She needs me. She’s never needed me before, always so competent. It’s the first time in our 48 years of marriage that I feel essential. That feels good!”
My mother in law was such a woman.