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Skip to 0 minutes and 0 seconds Recognize that the caregiver is the only one who holds the truth. Everyone else holds an opinion. Here’s how it rolls. The person who is giving the care. Other people call on the phone and they have a perfectly wonderful conversation with the person that they’re giving care to for 15 minutes, perfectly wonderful. And then they get the caregiver back on the phone and they say, wow, dad sounds great, do you think we can move him back home.

Skip to 0 minutes and 41 seconds What? Or a neighbor stops by and the person, you know, that you’re caring for looks pretty good, looks pretty good, right? And they are like, wow, you look great. You look like you’re doing well. These people with dementia can act perfectly fine over the phone, can look pretty good, but underneath they are lost. They are lost. And those people who think that it’s, you know, not that bad, you look great, it’s not that bad. Yeah, just ask them to come over and hang out for 24 hours.

Skip to 1 minute and 12 seconds It’ll take two hours.

Skip to 1 minute and 16 seconds Not until they experience what you have been experiencing firsthand, they won’t believe it’s that bad. But you, as a caregiver, must leave the premise. That means go check into a hotel somewhere. Because as long as you’re in the space, the person with dementia and Alzheimer’s will feel safer because they see you, and they’ll keep checking to make sure that you’re here and they see you. Do you know that you, as a caregiver, have to leave the premise so that family member or that neighbor can feel and see what you’re experiencing? Because when this person with dementia gets insecure, then the repetition will start. Then the I got robbed will start. Then the where is my mom will start.

Skip to 1 minute and 57 seconds And you want them to experience what you’ve been experiencing. This may be a little harsh, but I want to share this story. This one daughter was so angry at her brother because her brother just didn’t think it was that bad. And so he was coming to visit. And you know what she said out loud in a group of people? She said, you know what, I hope my mom poops, because then he will realize what I’m going through and the reality of what our mother is going through. That may be harsh, but she was serious. She felt like she was drowning cuz no one else understood what she was living through day in and day out.

Skip to 2 minutes and 41 seconds Let me reiterate.

Skip to 2 minutes and 44 seconds The people who hold the truth are not the ones who live somewhere else. The only people who hold the truth are the ones who are giving the care.

Skip to 2 minutes and 54 seconds And our role as an outside community is to support the caregiver, not question the caregiver. Support the caregiver. Drop off lasagna and run. Do their laundry and run. Take the person with dementia for a walk. Don’t run.

Skip to 3 minutes and 12 seconds Give the caregiver time to rest, to be alone, because the people who are suffering here are not the people with dementia. The people who are suffering and isolated are the caregivers. And our role is to support them.

Holder of the truth

While reflecting on this video, think about:

What are some ways you can give support to a caregiver? If you are a caregiver, what are some ways you can support yourself?

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This video is from the free online course:

Creating Moments of Joy for People with Alzheimer’s

Purdue University