It is almost two years since my mother died from Alzheimer’s. I have put off writing my story because I felt that there are really no words that can actually describe the nightmare of being an Alzheimer’s caregiver. My mother suffered for about four years, which at the time seemed like an eternity. Painfully I watched her decline; wishfully I waited for it to end.
My Alzheimer’s story is a horror story and the story of countless others afflicted by this dreadful disease and the countless caregivers affected as they witness the ravages of a disease with no definable cure. For the patients, a steady decline of a cognitive function marked by a struggle to identify familiar faces progressing to where they are completely incapable of caring for themselves. For caregivers, it is sad; it is tormenting and it can lead to depression and their own declining health from physically and mentally exhausting schedules of being on call 24/7. My horror story began right after my father died. Confusion, paranoia, anger, hostility could describe a lot of the elderly but knowing when it’s Alzheimer’s makes it easier to understand, give care and plan for future care.
As immigrants, they built a life together from nothing; raised a family, strong and determined to live life fully. He was her rock. When he died, the Alzheimer's unfolded and so the horror story began.
If you haven’t been there you could never imagine what being a caregiver means. But to give you a shortlist, it means being called all hours of the day or night with conversations that make no sense, issues that require you drop everything and rush off to help, trips to the emergency room as you draw endless amounts of energy from a place in your self that you never knew you had. It means being the target of angry hurtful outbursts and witnessing heart-wrenching inexplicable behavior to a steady decline of being unable to dress, feed or care for your self. It means being patient and compassionate and feeling guilty for lapses in your care as you fight exhaustion and depression.
For me this was the hardest, my mom was an incredible homemaker, a talented seamstress, meticulous about her appearance and always stylishly chic. She was independent, intelligent and loving. I just couldn’t believe what was happening to her.
The trauma is widespread, as long after the caring is over the horrors of Alzheimer’s destruction remain with caregivers, children and grandchildren. My Alzheimer’s story is over but there are many others with similar stories to tell. That’s why raising funding and giving support on all levels is so important. For Alzheimer's caregivers, the nightmare never completely ends.