Alzheimer’s caregivers share an uphill battle with their loved ones who suffer from the disease that can rattle the insides and penetrate deep aches and sadness of playing a role they are not prepared to play.
My niece works for the Alzheimer’s association and worked helplines assisting caregivers by answering questions and guiding them through the process of playing a role they never thought they’d play for their loved one, that of parent.
My father passed away from the disease and it took every ounce of patience and soulful understanding for our family to deal with the role reversal. My sister took my parents in when she bought a house that was more conducive to assisting my mother who was suffering physically from neuropathy and bad legs. It may have added a year or two to my mother’s life as she didn’t have to take stairs and literally had everything at her finger tips.
What was really unnerving was the fact that my father suffered from Alzheimer’s and he had no idea where he was. He would spend night after night begging for her to take him “home.” He would plead with her, “Please, take me home.” The only thing that satisfied him was a ride in the car. My sister would buckle him in, take him for a drive around the corner and bring him back home. My mother would greet him, he would go to his room, sort through his drawers and occupy himself four hours on end rearranging objects or “talking with friends” in his mind.
I read a recent a guest column from Patti Davis, the daughter of former President Ronald Reagan. Davis writes, “For the people losing their cognition, terror can be a constant companion, confusion nips at their heels, and they reach desperately for the person they once were. Caregivers reach for that, too.” Davis recounted how her father loved to visit their ranch north of Los Angeles. Its rolling pastures and wide open spaces were a respite for him and his favorite place to be. She said, “He became agitated and frightened by the expansive green miles he once loved. Dementia narrows the boundaries of one’s world; on that clear blue day when he said he wanted to go home, we learned that sad lesson.”
One night my sister took dad in the car and the disease outsmarted her. When they arrived home, my dad said, “This isn’t my home. I want to go home. You don’t understand.” My sister understood at that moment that this was beyond her control and anyone else’s for that matter.
My dad’s place was always with my mother. They were inseparable and they were at home with one another. My sister tried to keep him at home and take care of him as long as she could. She bore the brunt of the work, even though I would come home from LA on summer breaks to help out where I could and so did my brother and sisters. My sister put up with dad pouring things into the dishwasher and the delusional fits of seeing people in the house late at night. At night he would speak to visions and the veil of reality between this world and the next was lifted until he was gently guided back to his bedroom.
He should’ve been institutionalized years before. Someone was always with him and watching him but that took a toll on my mother. It got to a point where was he was increasingly putting others’ lives at risk, turning on the gas oven and meddling in other aspects of home life to occupy his time. He grew so angry with everyone that he threatened to punch my mother. This was the beyond the point of no return and finding him a Dementia Care Unit nursing home moved faster.
No one understood where “home” was for him. Was it the house he grew up in the small country town in Western New York? Was it our beloved family home and the street we loved so much in Kenmore, New York? Or the house she just moved him from in Parma? Or was it a fantastic symbol or an idea of home within; a peace that rises above the troubles of this world?
My mother always said her place of home was where the loves of her lives resided. “It wasn’t the physical place that made a home, but the people.” When we were together, she was in paradise. Strong words coming from a woman who came from a broken home; whose father left her when she was in high school and he ended up dying alone miles away from home.
My family knew it was time to bring others in to give dad a spiritual home that would prepare him for the end of his life. Davis, who founded a support organization for caregivers to tell their stories, has firsthand knowledge. “For the people losing their cognition, terror can be a constant companion, confusion nips at their heels, and they reach desperately for the person they once were. Caregivers reach for that, too.”
We’re all looking for that place of comfort. Some of us came from troubled homes and had to learn to create our comfortable environments with the loving support of others. We’ve all created those safe spaces real and imagined.
The day before my dad passed away, my sister and niece were visiting him. He was at the nursing home and started to talk with someone. He asked, “When will I see you again, momma?” My sister turned to my niece and asked if she heard that? She did. They both agreed that his mother was there for him, calling him home as she did when he was a child after playing games with his friends into the hours of twilight.
My father passed just two years after being placed in a nursing home. As I reflect on that time ten short years ago, I have a new understanding of home; a suitable idyllic place real or imagined where love resides and care for one’s dignity is restored and reclaimed.
spirit beat 