"Hope has two beautiful daughters; their names are Anger and Courage. Anger at the way things are, and Courage to forge change."
Sometimes attributed to St. Augustine, this quote jumped out at me from a random social media post last week. While it rings true for all kinds of life challenges, my first thought was of loved-ones traversing the tangled and twisted path of caring for a loved one with dementia.
From the first moments of suspecting something is wrong, to the sharp pain of diagnosis, and throughout the excruciating unknown length of time until a final good bye, the dementia caregiver experiences more emotions than a brief essay can hold. But, in more instances than many caregivers want to admit - even to themselves - one of the overriding feelings is anger. Additionally, caregivers are often too humble to acknowledge how courageous they have to be, as well as how their courage forges change in their lives and the lives of those around them. Guilt can get in the way of fully expressing anger and it can also hinder owning personal bravery.
Obviously the anger a caregiver feels about a loved one being robbed of the life they deserve is a justified rage, but the anger felt about their own life being changed forever is something many people grapple with.
I look to my grandmother's experience with my grandfather's early onset diagnosis for answers. While she did an admirable job of shielding me and my brother from her anger and grief when we were children, I had the good fortune of growing into my middle years with her at my side. As a result, she eventually shared about her anguish, her indignity, the shame she should never have experienced, and her realization that just getting out of bed each morning was a heroic act.
Together, my grandparents experienced not only the loss of his brilliant and still young mind (he was a surgeon), but both of their hearts were shattered by the tragic death of their daughter (my mother). This amplified his illness and burdened my grandmother with concern for grieving grandchildren in addition to navigating a far less supportive dementia-care model than is available today - even for a medical family.
And yet, somehow, my grandmother had access to hope through much of their dementia journey (despite experiencing additional grief and loss). She gave credit for her ability to access hope to the power of faith and to the grace of family and friends.
It took great courage for her to stay with her faith when so much had been taken from her and from my grandfather, but she remained ensconced in her beliefs though an active prayer life, dedication to worship, and devotion to her church community and subsequent causes - even when she was angry with God. "His back is broad enough to shoulder our doubts and anger," she wrote in a letter to me in college. "And his arms are forgiving enough to hold us, even as we rage." While she protected me and my brother from so much of her experience, she bravely lowered her guard with a wide circle of family members, church friends, neighbors, high school buddies, and with her and my grandfather's many connections in the medical field. Her relationships with her son, her neice, her sisters-in-law, and her many friends grew deeper as my grandfather became less and less himself. It was wise to let others in, but it was also brave. Shame can sadly be a large part of the dementia journey, so sharing the reality of the battle is courage at its finest.
The peers, the friends of similar or shared histories, were the respite when my grandmother had nowhere to go with her anger. She told me in her seventies, when some of her "cronies" as we called them, started to have health issues or pass away, that the freedom of expression (often over frosty crystal high-balls), the bright spots on the journey (girl trips galore!), and the hope they made possible for her was immeasurable. The loss of them was as painful as the loss of her sister. According to her, those gals walked with her through the fire of dementia and grief: embracing her anger, celebrating her courage, and allowing her full access to much needed hope.
Expressing anger in healthy ways and acknowledging courage throughout the journey are only two of many steps that can help dementia caregivers access the hope they dearly need. Those of us working in dementia-related care and causes are looking desperately for additional ways to provide hope to dementia loved-ones and caregivers. Anger and courage are not the only daughters of hope. And, hope is only one of many answers to arriving on the other side of a dementia-care journey, powerfully, and in good health.
Through exploration and dialogue we can increase support for those on the dementia-care journey. If you want to know more about dementia and how you can help those on the journey, please reach out to my friends over at Dementia Friendly Dallas or to a Dementia Friendly America chapter near you.
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