If there was one thing Dorothy knew for sure, it was that walking was good. Several years ago, her husband had a heart attack, and when he recovered, the doctor had said walking would change his life. So they walked. Every day, hand in hand, for hours. But now, in the throes of advanced dementia, she lived where she could receive care. Her husband occupied an independent apartment upstairs in the same building and visited daily.
Dorothy could out-walk the best of us, and one day she slipped past all the safety measures and out to the street. Because they had taken this route hundreds of times, she sped several blocks while staff searched rooms. Jumping in cars and using walkie talkies they scoured the streets until finally they saw her. Their relief dissipated when, before they could get to her, she’d disappeared down another street. For them, a wild ride, Dorothy only saw it as an afternoon’s walk. And walking was good.
Wandering
Not aimless meandering as the name suggests, the elder often feels there is a purpose, an urgent need, to go where they are going. They need to get to work, to go home or to pick their child up. Their reality, although different from ours, is real and an urgency accompanies the action. Often those who wander are physically fit and appear cognitively intact. The whole experience can be incredibly scary for those providing care.
What to do
Care homes have their own protocols for these kinds of situations, but what should you do if you are caring for a loved one in your home?
Before–If your elder is physically fit enough to walk independently and well, it’s a good idea to put some measures in place to keep them safe. Technology assures you can do this in a respectful, non-invasive manner. Look into the Alzheimer Society “Safely Home” program, which takes all the pertinent information and helps you at the time of a crisis like this. Multiple other programs such as door alarms and GPS tracking systems are available. It may seem like a frivolous expense–until the day you need it. Have a good quality 8 X 10 picture available which can be copied if needed.
During–Call 911. It’s so tempting to put off this step and to make one final sweep of the neighbourhood. Make the call. It’s important to get help, and the extra manpower of even one police car looking can be a tremendous help.
After–I remember how I felt the day I lost my five-year-old daughter at the mall. When I discovered her talking to an older couple, telling them “my Mommy is lost,” I wanted to hug her and kill her, not necessarily in that order! In spite of all you feel, when your loved one is found, smile, be pleasant and welcome them home. Chances are they have no idea of the stress they caused. Keep your tone gentle and friendly and save your tears or anger for when you are alone.
Anger and Aggression
We are more than our medical diagnosis. Medical treatment should support and empower us to experience a life worth living. https://www.edenalt.org/about-the-eden-alternative/mission-vision-values/
However, when anger and aggression becomes an issue so the elder’s quality of life is at risk and it becomes unsafe for those they live with, professional help is needed. Specialists and medications may be needed. It’s important to start low (with a low dose of any medication) and go slow (titrate the dosage up as needed slowly with thorough follow up as to its effectiveness.) This is a conversation to have with your doctor early in your relationship.
Anxiety and Depression
I learned from the best about anxiety and depression. Shirley struggled with both and we had these conversations many times a day.
Immediately after lunch finished, it began. “Who’s looking after me tonight?” I told her the name of her full-time, regular care partner who would arrive at 3:00 p.m. “What’s she going to do?” The same things she does every night. Get you ready for bed. “What if she won’t look after me?” It’s her job to look after you, but she also loves you and wants to see you comfortable. “What if she doesn’t come?” She will be here. She arrives at 3:00.
“Do I have a shower tonight?” No, no shower tonight. “Who’s looking after me tonight?”
At other times, the conversation would be: “I need to wash my hands.” We just washed them a few minutes ago. “But I touched something.” You aren’t eating, so they are fine. We will wash them just before you eat. “I need to wash my hands.” If we washed them again, a few minutes later, the conversation would start again.
Another version: “I need to see the doctor.” The doctor isn’t here right now, but he sees you every time he’s in. Why do you need to see him? “I’m sick.” How are you sick? “Just look at me. I’m sick.” What do you think is wrong? “I can’t look after myself.” It’s been that way for a long time. You’re not sick, you’re 93. Often when you get older, you need some help. That’s normal. “I need to see the doctor and go to the hospital.”
Shirley received all the help we could give her–medical professionals, medications, support, a gentle approach and heaps of patience. Some days were better than others, but for the most part, she struggled every day. As a care partner, you need to bring all the resources possible together for your elder, as well as make sure you have breaks and support. Without them, you will burn out.
As difficult and even frightening as all this may sound, it’s important to remember: your elder is more than their diagnosis or their struggles. They are people with wonderful personalities and abilities, including the ability to enrich your life. Access all the supports for them and yourself, but don’t forget to celebrate who they are and be thankful for the gifts they give you every day.
I learned that lesson from Shirley.
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