What It Means When a Person With Dementia Says: ‘I Want to Go Home’ ‘Home’ can refer to a place, time or even person.

What It Means When a Person With Dementia Says: ‘I Want to Go Home’ ‘Home’ can refer to a place, time or even person.

By Brenda Avadian, Contributor |Nov. 20, 2015, at 7:30 a.m.

What It Means When a Person With Dementia Says: ‘I Want to Go Home’

At age 86, my father took his first and only commercial airplane flight. His wife died three years earlier from congestive heart failure. He found solace in the basement tinkering with electronic and mechanical parts. He was Mr. Fix It – a member of the Greatest Generation who could and would repair anything. When he felt hungry, he’d go upstairs to the kitchen. He didn’t like to cook. “Women’s work,” he’d say. He was satisfied living on milk, reconstituted orange juice, hot dogs and bologna sandwiches. A Milwaukee County Department on Aging caseworker had arranged for him to be in the home-delivered meals program. He was profoundly deaf, so when he’d hear a knock on the door or the bell ring, he’d get to enjoy a more balanced meal.

During the following months, the caseworker grew increasingly concerned about his safety. She called, saying that if someone in the family didn’t get involved, she would have to order a safety check. Furthermore, he could be removed from his home for a 72-hour psychiatric evaluation.

An immigrant and survivor of the Armenian Genocide of 1915 to 1923, my father remained intensely private and enjoyed his independence. He did not want to be a burden to anybody, including well-meaning government officials. Removing him from his home for an assessment would kill him. He would question the very officials he trusted and would worry what had become of his freedom as a naturalized American citizen.

The caseworker was unsuccessful in getting a response from his locally-based children, so she called me in California. I flew back to my childhood home to meet with the caseworker and learn what I needed to do to prevent my father’s involuntary removal from his home.

During my two-week visit, I helped my father organize and make sense of his papers, a task that had overwhelmed him. A week into my visit, I felt a swell of relief when he agreed to”visit” us in California. The following week, I ramped up my efforts and pored through his papers, including scattered medical and financial records. My siblings remained uninvolved despite my pleas. The caseworker recommended that I become my father’s attorney in fact. If he was going to accompany me to California, I needed to have a power of attorney document in hand in case my siblings created an obstacle. Besides, I needed this to get a copy of his medical records from the different clinics he’d visited.

After 100 hours of effort, I had gathered most of the necessary documents. I purchased a one-way plane ticket to Los Angeles.

As the sun set, he refused to believe we were thousands of feet high, much less in a plane. As he finished his meal, he grew increasingly antsy. I asked the flight attendants if he could talk with them. They welcomed this first-time flyer up front near the cockpit. As the flight attendants made their rounds during this pre-9/11 flight, I thanked them and added that he had recently been diagnosed with dementia. Shortly before landing, he returned to his seat beaming proudly. He had earned his wings.

Meanwhile, my husband had gotten our California home ready for my father, in between full-time work and a four-hour daily commute, before meeting us at the airport.

During the 1.5-hour drive northeast from Los Angeles International Airport, my father commented on the freeway signs. “It’s late. Los Angeles?” he’d exclaim in a questioning tone. “Hey we’re far away from home! We need to check into a hotel.” As my husband drove toward home, I’d drift off to sleep in the back seat and wake up suddenly when I heard my father say, “Hollywood? C’mon, let’s get a hotel and rest before starting again in the morning.”

My father’s bedroom was ready. Freshly washed sheets, fluffy pillows, bookcases filled with assorted books to satiate his diverse interests. An avid reader, his short-term memory had diminished these last few years, making comprehension difficult. His bathroom was directly across the hall with new toiletries. I was confident he would breathe a sigh of relief and settle in, immediately. Besides, I was exhausted after two intensely busy weeks.

When he walked into our home, my husband David showed him his room and bathroom. He replied, “I want to go home.” An hour and a half later, I promised to take him home in the morning if we could rest the night. He agreed.

Comprehensive testing a couple of months later unveiled he had mid-stage dementia, likely caused by Alzheimer’s.

He was disoriented in both time and place. He couldn’t tell the difference between day and night. And moving from the lakefront community of Milwaukee to the high desert of California was as different as two places could be.

“I want to go home,” he’d say from time to time. “Take me home.”

Unknowingly, we replied with the truth, “This is your home now.”

“It is?” he’d ask, scanning his surroundings. “No it isn’t.”

He was lost in this new place … in our home. Sadly, he would never go home, again.

What It Means When People With Dementia Say ‘I Want to Go Home’

Caregivers are initially caught off guard when people in the middle to late-middle stage of dementia plead, “I want to go home!”

Although each person is unique, there are several explanations for this. Alzheimer’s destroys brain cells that help one retain short-term memories. Instead, memories from long ago – childhood or one’s young adult years – come to the fore. Depending on one’s age, these memories may go back 50 or more years. This longing for yesteryear can have an unsettling effect on family members. Spouses and children feel hurt when forgotten. Wanting to go home could refer to a place, a time or even people.

How to Help a Loved One Feel Home

  1. Learn about where “home” is. Encourage the person to talk about “home.”
    My father was not entirely clear on where home was, but I figured it was somewhere in Milwaukee during his prime working years as his family grew. Sometimes, it was Chicago, the city of his youth, where he played with his two younger brothers. I’d prompt his memory with names and even brief stories. He’d smile with recognition.
  2. Engage the person in dialog.
    My father often asked about Ma, “Where’s Ma?” I wasn’t sure whose Ma he was asking about, his or mine. I’d fish for hints with questions. “Was Ma strict? How was it to sail to America? What did you feel when you saw the Statue of Liberty?” Unfortunately, he didn’t remember too much, but I sensed a feeling of ease. In case he was asking about my mom, I’d recall the picnics we’d have on Sundays. My father would smile and ask, “You remember those?” Regardless of whether he remembered, what was important was that he felt he was on shared familiar ground.
  3. Offer to take the person home.
    Several times when my father could not be comforted, I offered to take him home. We got in the car, and I told him, “You’ll need to help me find it because it’s been a long time and I forgot the way.” But he too forgot the way – a good thing, since home was about 2,000 miles away! We laughed and after a short drive around the neighborhood, returned home. Sometimes, he’d surprise with: “You remembered. We’re home.”

As family members and care partners, we invite feelings of familiarity and comfort in those whose life histories are riddled with voids due to Alzheimer’s. Try to join a person’s reality by asking questions, sharing memories and even offering to take the person home.

Corrected on April 5, 2017: A previous version of this article inaccurately characterized airplane altitude.

Tags: healthpatientspatient advicecaregivingdementiaFor Better

Brenda Avadian , M.A., is the president of The Caregiver’s Voice , bringing family and professional caregivers knowledge, hope and joy since 1998.

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