I’ve read a lot about the issue of “wandering” with dementia patients. Wandering is the term describing exactly that action: a person who wanders aimlessly with no destination or purpose. Often times, the wandering person ends up lost, as they are disoriented with their surroundings.
Lucky for us, wandering hasn’t been an issue with mom. And with semantic dementia, getting lost isn’t much of a problem. While they forget many things, they are generally able to make their way through familiar routes and destinations. Wandering occurs mostly in Alzheimer’s patients and in later stages of dementia.
Lately, mom has been wanting to get out to walk. She has walked places in the past and during the short period of time that she had a caregiver, mom and Teresa would take a walk every week up to Kmart, the Dollar Tree, etc. Mom seems to enjoy getting out and getting exercise and exerting some sort of independence (so long as it’s not too hot, too cold or too windy). Last week, mom wanted to walk to see her sister, who lives a mile down the road. Her other sister offered her a ride, but mom was adamant that she wanted to see “how good” she could do by walking. Aunt Claudia followed mom in her car as mom walked the mile to Aunt Ellen’s house. It seems that mom has a newfound freedom in walking. My Aunt forwarded me an email that mom wrote to her after her walk to her house:
I walked so good from your house I walked over one thousand and several hundred walks and onto the third street before Claudia got me and I felt okay. I wonder if I could ever try again all the way to some other friends houses too. Even the lady from church that meets you I can go there too and also my friend that lives behind you and one that live above you too. I hope I will be okay.
I was expressing some concerns about this issue in an online support group in which I’m a part of, and I mistakenly used the term “wandering” (for lack of a better word). As I learned from others in the group, what mom is experiencing is not wandering. The correct term would be “roaming”. Roaming differs from wandering in that there is a purpose and a destination in their walks with roaming. I don’t know if, as the disease progresses, the roaming will eventually become wandering. My guess is that it will as she loses more and more of her memory and abilities. For now, mom is intentional in her walks and does not get disoriented in where she’s going.
The problem is safety. I worry that mom will not notice traffic or be aware of potential hazards in the road. What if she gets hit by a car? What if someone tries to snatch her purse or gets angry with her because of her oblivious behavior to her surroundings? What if she becomes dehydrated or tired or sick along the way? How are people going to react when she shows up on their doorsteps and what if memory serves her wrong and she ends up on the wrong doorstep? What if she eventually does become disorientated and loses her way?
The other problem is that she sometimes does things she shouldn’t be doing when out. For example, one day a check came in the mail (long story…the auto deposit was messed up). Right away, mom walked up to the bank, cashed the check and hid the money. Another example, yesterday mom walked up to the store to buy bacon. We have purposely kept bacon out of the house because it is one of the only things she cooks these days and it is a major safety issue (you can catch up on that post here).
When a caregiver is with her, this obviously isn’t an issue. It is the hours or days that she is left alone for the day that it becomes a problem. We have urged her not to go out alone but as with everything else, mom does not understand our concern and continues to do what she feels like doing. All we can to is take preventative measures to avoid any problems while she is out roaming. This is what we’ve come up with:
- Mom takes her cell phone with her and has our numbers programmed into her phone.
- I told mom to please call me when she plans to go out walking and to call me once she gets to her destination so that I know she made it safely. This works when she is not being sneaky about where she is going.
- Neighbors are aware of the situation and keep us informed when she leaves the house. Sometimes they offer her rides out of concern for her walking alone. They have my and my dad’s phone numbers to contact us and let us know when she’s out. Lucky for us, the neighbors next door have been there since before my family moved in (over 25 years) and know us well and they spend a lot of time outdoors and in their garage working on cars and whatnot.
- The clerks at the grocery store know mom and our situation. At least 2 of them have asked for my phone number and help keep tabs on her when she shows up in there alone. In fact, the store manager’s father also suffers from FTD, so he is very watchful and concerned with mom and helps keep a good eye on her.
- We bought an ID bracelet for mom. Unfortunately, she won’t wear it. We’re working on a solution for this…maybe attaching it to her purse. I believe she has an ICE contact programmed into her phone as well.
- We have to be attentive to situations. For example, I saw the broccoli and cauliflower in the fridge on Monday. So when mom called me yesterday and said she wanted to walk to the store, I knew exactly what she was going for. Bacon. (Dad bought her bacon bits, but it wasn’t the right stuff). We have to try and keep one step ahead of mom and anticipate what her next move will be. It also helps that she has a routine, so we know what window of time she will attempt to go on her walks and can check in with her on those times.
Hopefully soon we will have people with her everyday and we won’t have to worry about her getting out to walk on her own.
For those of you who find yourself in the same situation and roaming has become an issue with your loved one, take preventative measures! Don’t be afraid to talk to people in your community (neighbors, cashiers, etc) about your situation. Chances are, they are concerned and willing to help.
For those of you who read my blog who are friends/neighbors that live close by mom, consider this your warning…you never know when my mom will show up on your doorstep ;)