Hope takes on different meanings for Alzheimer's caregivers
By Angela Lunde April 2, 2014
"The future is today; this very precious day, this very precious moment of this day is a blessing. This is my renewed HOPE."
wife, caregiver, advocate, inspiration
In my last posting, I wrote about hope. Some of you were rattled by the notion that I would write about hope if the immediate forecast does not offer the promise of a cure for Alzheimer's.
I understand that due to the subjective nature and interpretation of hope, procuring hope in the context of a progressive dementia may seem illogical and even insensitive to some. And if hope is seen as static and defined solely through the lens of a cure, then the harsh reaction I received from a few makes some sense.
When someone is diagnosed with Alzheimer's or a related dementia, we may silently hope that the diagnosis is incorrect or that somehow they will defy the odds and not get any worse. We hope that a drug is available that will fix the problem or that a new drug will come to market at any moment. But, as time goes on, this hope fades.
Hope, though, is central to life. When one hope fades we can choose to put new hope back into our lives. But as you know, not all hope is the same; there's hope for things we can't control and hope for things we can.
Last week, I had a conversation with a palliative care doctor from Duke Medical Center. He sees women with late stage breast cancer who have little to no chance of surviving more than a year. I asked him how he helps these women and he replied, "I ask them, what do you hope for?"
The women respond with things like: I hope to teach my husband to prepare nutritious meals for my kids; I hope to travel next month with my partner with minimal pain; I hope for comfort, dignity, continued friendship and love.
For caregivers supporting a loved one with dementia, I've seen the experience of hope shift from saving their loved one to finding hope in other ways such as discovering creative ways to offer care or to be fully present with their loved one.
Others discover how their situation brings new meaning to their life as qualities about themselves they didn't know they had emerge including patience, resilience and even humor and gratitude in the most challenging of times.
Some caregivers find hope by supporting and mentoring others who are experiencing similar pain or by advocating for laws or research funding.
But there are barriers to hope which include caregiver distress, fatigue, anxiety, social isolation and loneliness. The key then to renewing hope may lie in nourishing relationships that support and energize, engaging in self-care practices and living each day believing that acceptance is not about giving up or liking the circumstances of your life in this moment, but instead, making peace with what is.
Hope is a psychosocial and spiritual resource that offers up the possibility of a positive future alongside the difficult transitions and challenges caregivers face. It can be an inner source of strength.
I for one see hope as dynamic. It is reshaped and redefined throughout our lives. My hope today is that those of you who read this take from it what serves you, and let go, without judgment, what doesn't. Like each of you, I'm doing the best I can, with only good intentions at heart.
April 02, 2014