Everyone wants to understand the progression of dementia and Alzheimer’s disease. Geriatric reception areas, Memory Center waiting rooms and social media message boards are full of questions about “the stages.” What stage is this? How long will this stage last? Have we progressed to another stage? What is the last stage of this disease?
Although different for each person affected, caregivers experience a characteristically common and painful journey. The first caregiver stage is usually earmarked by a sense of “Being Overwhelmed”.
While early-stage dementia sufferers work hard to mask their symptoms, family and friends put their energy into denial. Dementia and Alzheimer’s sufferers fear knowing because with knowledge independence can be at risk. Family and friends fear knowing for very different reasons.
Year #6: “I’m going back to Arizona this winter,” she says with her jaw set and her fists clenched. But I’m too busy to notice. I’m calculating all the ways in which my mother needs help: the cross-country flight, opening up the house and settling in for the season. Followed immediately by long distance phone calls pleading to come home. And ending in the emotionally charged and tense steps required returning her to Vermont.
She can’t face the truth. Hell, I can’t force myself to say it out loud. We’ve reached an inflection, a point between stages along the path of this illness.
It would be her last trip.
In time a caregiver’s world becomes defined by the second stage, “Being Tired.” An exhaustive mind-and-body slam results from the continual balancing act of a loved one’s debilitating illness combined 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. And after each emotional eruption coming from nowhere, silent promises are made to be more understanding, more supportive and less reactive.
Then there’s the unrelenting guilt as the next challenge unfolds; the cycle is constant, eternal.
Hope is ever present among dementia caregivers. Hope that a cure will be found; hope that today will be better than yesterday for their loved one and themselves; hope that their loved one may find a moment of lucidity or recognition; hope that they may find patience and grace within the absurdity of the disease. It’s human nature to have hope in the face of adversity.
Year #14: I resist for a long time finally deciding this year to participate in the Alzheimer’s Walk. I make my way along the path lost in my own thoughts when Sandy, the Medical Director catches up to me sharing plans for a new wing at mom’s facility. The wing will transition residents from Assisted Living to Full Memory Care and upon it’s opening some Memory residents will be allowed to “move backwards” in their care.
“When will Mom be transferring?” I blurt out.
“Vera isn’t a candidate for the new wing, Lisa. She’s too advanced in her dementia. But, Jim will be making the move,” Sandy gestures to mom’s next-door neighbor standing to her right. Jim seemingly unaware of the discussion shuffles his feet, looks at the ground and urinates.
The distraction Jim creates affords me cover to slip away. Walking quickly turns to running but I don’t make it to the car before the tears erupt. I can’t start the engine and sit frozen in time and space wondering,
Why am I so blind to my mother’s reality?
After a long roller coaster ride with dementia and Alzheimer’s disease, primary caregivers simply wear down. It results from the seemingly random nature of a loved one’s behavior or the steep slope of the disease’s declining path. Ever present and often revisited when a caregiver is most vulnerable is the stage of “Being Angry.”
Anger points in many directions and is often simultaneously directed at self, at the person with dementia, at the medical community, at family, at work, at the care facility, at fate and at the world.
Primary caregivers need support. Family and group engagement is essential to provide grounding, reassurance and respite. It can be the most difficult time for intervention as primary caregivers usually push others away.
Year #10: After six months in Memory Care the antipsychotics work, her delusions and hallucinations abate and she experiences only minor side effects. It’s magical. My mother “returns” and like old times we go shopping and out to lunch. And the bad memories begin to fade.
It starts slowly and I refuse to admit it’s happening. Within less than a year the delusions and hallucinations return. Care staff is hired for overnights when we can’t be with her and their logs record the returning terror:
“Tonight they’re going to kill her, there’s a man outside trying to get in, she was so afraid to turn the light on that she rang the alarm bell, a young girl is shredding Vera’s personal letters, there’s blood everywhere, they’re going to take her to the place and pour the numbing stuff on her, Vera’s parents are waiting for her in Room 312 but she’s unable to find the room, tonight Vera told me about the people who live in the trees outside her bedroom windows…bad people.”
And the recurring entry: “Vera believes Lisa is being stabbed.”
Only through therapy I begin to understand this delusion my mother had about me. She was losing control of her thoughts, her actions, her very self. The sharpest edge of her illness was that she understood completely; at least for a while. Her manifestation became the stabbing played over and over in her mind. An act she couldn’t stop as the plaques and tangles consumed her brain.
When I’m most vulnerable as a caregiver, anger is a place I often return.
The last stage of caregiving can precede the death of a loved one or may only come through grief’s journey after death. The last stage is one of “Achieving Understanding and Acceptance”.
As a dementia caregiving survivor, I’ve come to understand and accept certain truths about this illness. We write about our dementia and Alzheimer’s experience because we face a disease that cannot be prevented, slowed or cured. We seek answers because the manifestation of this illness is frightening, perplexing and irrational to all affected.
Those diagnosed with dementia and Alzheimer’s possess a cruel knowledge of how the disease will ultimately rob them of life. They look for and create messages of hope. They cling to perspectives of “living with” and not “dying from” the disease. They strive each and every day to find strength in the face of their decline.
Those caring for a loved one with the disease wrestle each day with an emotional cocktail of anger, guilt, self doubt, isolation, denial and exhaustion as we try to survive the act of caregiving for someone we love deeply. We bear witness first hand to the ravages of the disease.
Acting in good faith we support each other, but we are different audiences within this painful play. Although our search may take us to the same place, we often have different questions. Sometimes we even hope for different answers to the same question.
Associations provide support and awareness. Scientists search for correlation and cure. Social media sites and support groups offer possible answers, but maybe they’re just places to be heard and not judged.
Although we’re different, what binds us together is hope to find a cure for this despicable illness.
For all of us, the strength to walk this path finds its roots in hope.