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“wandering” is not a symptom of dementia

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“Mom won’t sit in that room, she won’t stay there,” I said to the Director of Nursing (DON) in the autumn of 2012 when she showed me the room the person in control of my mother’s care had chosen for my mother.

“Oh, she’s a wanderer,” the DON smiled at me over her shoulder. “We know how to handle them.”

A wandererI didn’t know what that meant. I knew Mom loved to be on the move, that she rarely sat still, that she had been like that her entire life: a go-getter, a force to be reckoned with, the life of the party; she had boundless energy. I found the DON’s word curious. Had I known then what I know now, there would have been a fireworks’ of red flags. But I didn’t. I trusted the DON, who claimed to be an expert. What a mistake placing my trust in her would prove to be.

I didn’t understand what she meant by “handling them” either. I didn’t know that being labeled “a wanderer” would lead to my mom being sedated with antipsychotics to the point where she could no longer stand, let alone walk. I didn’t know how the behaviour of people with dementia is misinterpreted and misrepresented, and that as a result many are medicated into compliance for the sake of convenience and cost reduction. I never dreamed my mother would be physically and chemically restrained, both of which are forms of abuse.

I didn’t know then. But I know now. And every time I see the words “wanderer,” or “wandering,” “elopement,” or “exit-seeking behaviour” I want to scream: “Don’t you see? People who live with dementia are just like you and me. They want to be free, not chained. They want to live with purpose, not pity. They want to participate in life, not be sidelined!”

Sometimes my anger and frustration get the best of me. Today is one of those days. I wish people would ask more questions and come up with better answers.

P.S. Dear everyone who uses pejorative and damaging labels to describe the behaviour of people who live with dementia, PLEASE STOP. Thank you.

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15 Comments

  1. I respect the viewpoint here, and I have seen it from both sides. Very often we see people looking for people who are lost, and whose cognitive challenge prevent them from finding safety. I would urge the public to consider measures to help identify those with cognitive challenge, so that they can be helped if they need help, and are unable to identify themselves or if they need help. We have a very cruel world, which will abandon many people. The MedicAlert bracelet is really not enough. I would urge caregivers to help those with cognitive challenges to prepare very nice, colorful, pretty (for women) shirts, which also have the individual’s name, address, and telephone number on a prominent part of the shirt to help the person get home, if they need help.

  2. Maureen is labelled as an ‘exit seeker’ whenever she has been in Respite Care. A couple of weeks ago a Care Home would only allow her to stay if we paid for one to one care through the night so that they could contain her ‘wandering’. They wouldn’t even let her go into an enclosed garden during the day in case she refused to come back inside. Little wonder she was sitting next to the exit when I went to pick her up!

    • Little wonder indeed. Put me in a prison, and you gotta know I’m going to try to escape. I don’t even like tight clothing around my neck, ankles or my wrists (in particular). Maybe in a past life I was chained or shackled. But my reaction to being confined in any way (including silenced) is what some might consider “extreme.” I can EASILY put myself in the place of people who live with dementia and imagine how they might feel when confronted with a locked door and told they had to stay where they were no matter what their own wishes might be.

  3. That is sad, Susan. I have never heard that word applied to someone with Alzheimer’s. I am sorry your mom suffered like she did with the restraints. I pray that your heart is soothed because you are not to blame for any of it. We do not know-what we do not know….and when we DO know–we do better than we did. (not sure if THAT makes any sense but it does to me)…lol xo Dian

    • Diana, I fought for four years to get her off the drugs, but I wasn’t listened to because I wasn’t a medical “professional,” and I wasn’t an “expert.” But I am expert now. And I know I was right all that time, and my mom suffered because the so-called “experts” were dead wrong. And that’s what turned me into the passionate advocate I am today. I refuse to let her suffering, which had nothing to do with the disease and everything to do with the way she was treated, to have been without meaning and purpose.

      • That’s powerful stuff

        “…her suffering, which had nothing to do with the disease and everything to do with the way she was treated…”

        • Because I was not the one in legal control of her care. She had signed a document years earlier giving legal control of her care and her money to another family member in the event of her incapacity. Essentially, I wanted more and better care, and the person in legal control wanted less and cheaper. I went to court to try to get control, but I lost. It’s virtually impossible to wrest control from someone who has been given it. The system and everyone in it were against me. Also, neglect and abuse are hard to prove, especially when the perpetrators are “experts” / “professionals.” It’s basically your word against theirs.

  4. Right on Susan. The mindset of the caregivers MUST change.

    Labels often given to describe a person with dementia’s actions are demeaning to that person and reduces them to becoming an Object of the care that needs to be “handeled”, rather than a WHOLE HUMAN BEING, with feelings and emotional needs that are begging to be met.

    Labels are indicative of the caregiver’s lack of understanding of Dementia and how it effects the “PERSON’s” ability to communicate their needs.

    ALL Behavior IS an Attempt to Communicate an Unmet Need, Most Often Emotional!

    Recognizing, Discovering and Meeting the underlying emotional need is KEY!

    • Judy, we are totally and completely 100% on the same page! Your 16 years’ of direct experience running a truly person-centered care home makes you infinitely qualified to speak to this subject, and I thank you for all the work you have done and continue to do as well as for sharing your wisdom. I hope people will visit your website here: http://www.dementiaspecialistconsulting.com/

  5. Love this.
    One day I may get dementia and since I am also very energetic i may wind up driving everyone crazy since I am always walking or going somewhere. May God help me find someone who will keep me out of nursing homes.

    • You and me both Olga ! Alternatively: “May God help me find ways to change the system so that nursing homes provide caring, engaging, vibrant environments that help the people who reside in them live joyful, purposeful and productive lives until the end.”

  6. Bing Boettner on

    As always, Susan, you nail the problem. Am so grateful for your insight into vocabulary for our loved ones who have dementia. Appreciate it very much!

    • Thanks Bing and I appreciate all the good work you are doing with the next generation – keep it up. Let me know if and when I can support you going forward <3

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