One of the most frightening aspects of my dad’s dementia was his tendency to wander. It is unfortunately a common symptom of Alzheimer’s and other dementias. It can place people in life-threatening situations. In fact, a gentleman with Alzheimer’s in the same town where my parents retired wandered away from his home one winter and died from exposure. He’d fallen into a ditch and had gotten tangled in some weeds and brush.
Fortunately, my father’s wandering never led to physical danger, but it did scare my mom and I. On a few occasions, my mother had to call the police, who were wonderful about tracking my father down, but it was nerve-wracking until he was home. It also became impossible for my mother to take my dad on any errands, because she couldn’t trust him to wait for her. One time he wandered away while she was in the dentist’s chair, and ended up at a fast food restaurant a few doors down, which he claimed was full of spiders. Another time, he wandered away from McDonald’s while my mother was in the restroom. The police found him near the drive-thru.
When I was contacted on Twitter about A Caregiver’s Guide to Wandering, I was interested in learning more. The guide was inspired by Sergeant Jacqueline Fortune of the Harris County Sheriff’s Office in Houston, Texas, who’s department was using Boerner, Inc.’s McGruff Safe Kids ID Kit to address wandering calls in the area they serve. The company decided to create a guide to help caregivers cope with the specific wandering issues associated with dementia.
The 12-page guide offers innovative, concrete tips on preventing wandering as well as developing an action plan to implement when a wandering incident occurs. The guide is designed to be used by agencies — it is in use in the VA Hospital in Palo Alto, California and in agencies in thirteen other states, including several Area Agencies on Aging.
I believe this guide could be useful to every dementia caregiver. If you know of an organization that works with the aging in your community, recommend A Caregiver’s Guide to Wanderingas a resource for dementia caregivers.
Full disclosure: I received a complimentary copy of the guide for this review.
In my local newspaper there was a sad story about a man with Alzheimer’s who wandered away in the middle of the night and walked a few miles from his home. He ended up at the front door of someone’s house at around 4 a.m., where he proceeded to ring the doorbell multiple times and turned the doorknob. The residents, who had just moved into the home recently, were understandably freaked out and did the right thing by calling 911. But then the male in the house did exactly the wrong thing. He stepped outside with a gun and when he saw the approaching figure, who was now in the yard, he told the person to stop. The person did not obey his orders and kept coming towards him. The resident shot the man in the yard and killed him.
Once the resident discovered that the intruder was actually an elderly man with advanced Alzheimer’s, he felt great remorse. Of course, the family of the man with Alzheimer’s also have to live with the violent and senseless way their loved one died. The police have not charged the man with gun yet, saying while it was foolish to go outside, he did not break any laws.
It’s a sad case all around but one that I unfortunately can see happening more in the future. It is easy for those who have never cared for a loved one with Alzheimer’s to criticize the family for allowing him to escape into the cold night, but we know how difficult it is to keep watch over someone with dementia 24/7. And those with Alzheimer’s may not be cooperative and act odd, even violent, scaring a stranger into taking drastic measures in order to protect themselves. Anti-gun advocates will want to blame weapons in the home, but it still goes back to the person and how they react in a situation.
I think about the several times my dad wandered off and how he could have ended up like this gentleman. It’s a sobering lesson for all of us.
I found this article about the steps a dementia care center took to reduce the amount of middle of the night wandering by their dementia patients very interesting. The solution was simple and not nearly as expensive as medication. They simply offered the wandering residents snacks (a mix of naughty and healthy food) and the midnight snacks really seemed to curb their wandering tendencies.
I’ve written many times before about how Dad would wander at the nursing home. He was in a secure dementia care wing, so he couldn’t get outside, but he could still fall, which was the concern of the nursing home referred to in the article above.
When Dad wandered, sometimes he would have to be lured back to his room by a treat. One time it was a lollipop. Another time it was a piece of chocolate. The small bit of sweets seemed to calm Dad’s wandering spirit, at least for that night.
As the article mentions, the staff provided safe snacks for their diabetic dementia patients as well. I fully support care centers such as these that get creative in trying to accommodate their dementia residents. Offering snacks and the cleanup involved creates a bit more work than just handing out pills, but there are some centers that actually care about quality of life, versus just trying to make patients into “trouble free” zombies.
We need to encourage more of these proactive care centers in our communities.
I was thinking about my dad’s wandering escapades recently, and remembering the one that took place at McDonald’s. Poor Mom couldn’t even go to the restroom in peace without Dad taking off. The worst thing about that incident was that Mom went looking for him inside and outside the restaurant, and couldn’t find him. So she called the police, which she hated to do but was the right thing in that situation. The police responded and found Dad. He was standing by the drive-thru.
This made me think about an incident that took place when I was a kid, probably when I was in junior high. It was our traditional weekend trek to a fast food restaurant. This time it was Arby’s. I loved the curly fries and the Jamocha shake, but could take or leave the sandwich. Well, I liked the Horsey sauce, or maybe it was the name that I liked saying more than anything. Anyways, we were done with our meal and Mom and I headed to the restroom while Dad headed out to smoke. We had done this same scenario a hundred times before.
The scene of Dad's "lost and found" experience when he had dementia.
By the time Mom and I would be finished, Dad would be done with his smoke and in the car waiting for us. But not this time.
Dad was definitely not in the car and it was still locked. I walked around the building and looked for him, but no signs of Dad. Maybe the bathroom? Dad was known for his stomach troubles, which could come on suddenly, so we decided to give him a bit of time. The minutes ticked by slowly as we waited by the car. (Long before the days of smartphones, where you could kill time by playing a round or two of Angry Birds!) At least 10-15 minutes passed, and no sign of Dad. Mom started to get worried so we went back inside the restaurant and asked a male employee if they could check the men’s bathroom for us. They did, but no sign of Dad.
Dad wasn’t a likely kidnapping target, but we were starting to run out of ideas. Finally, as if by magic, Dad appeared, walking over from the tire store next door. Why in the world he had a sudden, urgent desire to look at tires I’ll never know. Mom scolded him for making us worry but he just shrugged it off.
I don’t remember this happening again until Dad started showing signs of dementia. It was just a strange, momentary glimpse of what was to come.
Dad had a habit of disappearing on us when we were shopping at the mall. Understandably bored, he would usually sit in the car and read or meditate. But in the sweltering summer heat, Dad would have to venture elsewhere. And that’s when I was sent out as a reluctant one-person search party while my mom set on a bench in the shade and checked over her receipts to make sure she got all of the discounts owed her.
I can remember circling the mall completely, and still seeing no sign of Dad. I would peek inside at the handful of places he might venture into, such as the newsstand. I would check all of the smoking areas, where sometimes I would get lucky and find him. Other times, I felt like I would never find him. I would be mildly concerned but mainly irritated. It’s not like I ever thought he was in real danger at the time.
Of course, when the dementia set in, tracking Dad down was not a benign, mildly frustrating event but a frightening ordeal. My mom could not even go and have important work done on her teeth without Dad slipping away at the dentist office, despite the promise that the staff would look after him. “He’s at Sonic, is that okay,” the receptionist would ask my mom while she was trapped in the dentist chair, mouth numb and useless due to the Novocain.
The dentist would try to finish up the procedure as quickly as he could, while my mom envisioned my dad crossing the street at the wrong time and being hit by a car, or taking off again and getting even more lost.
So Dad was always a wanderer, but the disease made it much harder to find him.
Even after my dad had to stop driving due to his increasing dementia, there was a period where he could still do errands on his own. This gave my mom some much-needed quiet time, and kept dad from getting cabin fever. But as he declined further, mom would worry about him returning safely more and more. I think I’ve mentioned before how he would wander off on his own sometimes, saying he was going to the bank on Sundays even though it was closed.
The hill in front of my parents’ property became a focal point of these journeys. My mom (and I when I was visiting home) would stare out the window in the guest bedroom, praying silently that we would see the tall, lean figure of my dad, his long legs pumping strongly up that hill, returning home safely. So even though my mom should have been able to enjoy that time alone, she was still constantly fearing she would get the phone call that all families dealing with dementia dread. She would worry that he would be hit by a car because he would ignore the crossing signal. She worried that he would forget where to go or how to return home.
That hill was one of the markers of my dad’s independence, and how quickly it was fading. Soon, he would only be allowed to stand on the porch to smoke, with my mom or I peeking out to make sure he didn’t slip down the stairs and wander off. The porch overlooks the hill, and I don’t know if dad could reason at that point that Alzheimer’s was robbing his independence, or if everything surrounding him seemed like a foreign land that he had never seen before.