Many ask about the progression of dementia and Alzheimer’s – what are the “stages” of the disease for those diagnosed?
Care Partners also experience a journey that plays out in stages when supporting a loved one. As parents disappear into childlike behavior or vibrant life partners shift to full dependence through the brain disease progression; even the hardiest souls will find challenge.
The first stage for any Care Partner is a sense of “Being Overwhelmed.” While those struggling with early stage dementia work hard to mask their symptoms, family and friends put energy into denial. Those living with dementia fear knowing because once confirmed independence could be at risk. Their family and friends fear knowing for very different reasons.
“I’m going back to Arizona this winter,” my mother says with her jaw set and her fists clenched. But I’m too busy to notice. I’m calculating all the ways in which she’ll need help: the cross-country flight, opening up the house and settling in for the season. Followed immediately by the phone calls pleading to come back home.
This would be her last trip.
In time a Care Partner’s world becomes defined by the second stage, “Being Tired.” It’s a mind-and-body slam of exhaustion coming from the continual balancing act of caregiving with the demands of work, family and personal health.
Not many days look like the popular depictions of the disease seen on television. Missing is the tension, frustration and complete vexation this illness produces.
Poise is elusive. After each emotional eruption comes from nowhere, Care Partners make silent promises to be more understanding, more supportive and less reactive. But as the next challenge unfolds we often repeat the same conditioned behavior resulting in unrelenting guilt.
My mother’s terrifying hallucinations and delusions return, they start slowly but are undeniable.
“Tonight she says they’ll kill her, take her to that room and pour the numbing stuff on her. There’s a man outside trying to get in. She’s trying to find her parents. She told me about the people who live in the trees outside her bedroom, bad people.”
And the recurring delusion, “She believes I’m being stabbed.”
Only through therapy do I understand the fear my mother had for me. She was losing control of her thoughts, her actions, her very self. And she understood completely; at least for a while. Injury to me played over and over in her mind; an act a mother couldn’t stop as plaques and tangles consumed her brain.
Through a long roller coaster ride with dementia, primary Care Partners simply wear down. Ever present and often revisited when a partner is most vulnerable is the stage of “Being Angry.”
Anger points in many directions and is often simultaneous at self, at the person living with the disease, at the medical community, at family, at work, at the care facility, at fate and at the world.
Her memory care facility announces the opening of a new wing allowing some residents to “move backwards” in their care. I blurt out to the Medical Director, “When will mom be transferring to the new wing?”
“Your mom isn’t a candidate. She’s too advanced in her dementia. But, Jim will be making the move,” the director gestures to the man on her right. Seemingly unaware of the discussion Jim shuffles his feet, looks at the ground and urinates.
His distraction affords me cover to slip away. Walking turns to running but I don’t make it to the car before the tears erupt. I’m angry and wonder, why am I so blind to my mother’s reality?
The last stage of Care Partnership may only come through grief’s journey after death. It’s one of “Achieving Understanding and Acceptance.”
As a dementia caregiving survivor, I’ve come to accept certain truths. We write about our experience because we face a disease that cannot be prevented, slowed or cured. We seek answers because the manifestation of the illness is frightening, perplexing and irrational to all affected.
How can you survive a journey through Care Partnership?
- Let go of unrealistic expectations. Mountains of reference material exist that you’ll find helpful, however there’s no manual tailored to your situation. Know that you cannot do it all, you cannot do it perfectly and you will feel conflicting emotions as you ride the dementia rollercoaster with your loved one.
- Identify what triggers your feelings of anger, guilt, self-doubt and exhaustion. Keep a journal by jotting down what you feel and the events driving those feelings. Don’t judge. Simply understand by disengaging from emotionally escalating situations you can better maintain your balance and your health.
- It’s human nature to have hope in the face of adversity. Become empowered by your hope, which can be found in many moments of the journey. Hope that a cure will be found, hope that today will be better than yesterday for your loved one and yourself, hope for moments of lucidity or recognition, and hope that you may find patience and grace within the absurdity of this devastating brain disease.
The strength to walk a Care Partner path finds its roots in hope.
Lisa B Capp is a blogger, an activist and a dementia caregiving survivor. She serves as a co-chair to Alzheimer’s Association Leadership Board (Vermont), member of the Alzheimer’s Impact Movement (AIM), and AlzAuthors.
As a High Tech Change Consultant, Lisa’s worked with leaders of global business, government agencies and non-profits. Her passion for building strength through transition is now focused on helping others find their power through the caregiving journey. www.lisabcapp.com