Part three of my series on dementia. Published in MidWeek 7/3/19.
Mom wants to go out and you can’t let her. But she wants to shop. She doesn’t understand why you’re blocking her. You know she’ll get lost, or worse. Heck, the place might not even exist anymore.
Conflict ensues—arguments, anger, yelling, crying, impatience, confusion, regret.
Then it’s over—until the next time. Lather, rinse, repeat.
Patrick Harrison is Director of Post-Acute Care at the Hawaii Healthcare Association. He wants to help Hawaii families break the cycle. First, he says there are myths that have to be addressed. One of the biggest is that dementia is just a normal part of aging.
“While there are certainly mild age-related changes in memory and cognition, a dementia illness itself is not a normal part of the aging process,” he says.
People believe their loved ones are just “getting older,” which may blind them to the fact that they’re actually suffering from a significant cognitive decline associated with dementia.
“The most significant thing I’ve seen is that folks often don’t know how to deal with dementia.”
There are two facets—dealing with the patient and then dealing with the family member.
“They don’t know who to turn to, they don’t know how to respond.”
The Healthcare Association of Hawaii recently brought in Teepa Snow, an expert in dementia care who travels the world teaching caregivers how to understand what’s going on, and how to deal with their loved ones through observation, patience, and a good amount of clever deflection.
Patrick Harrison greets Teepa Snow in Honolulu
First, she gleans data from the patient by listening and watching and talking with them.
“It’s a back and forth. You’re learning to dance with one another,” explains Snow.
“The thing about dementia is—because it’s both chemical and structural, I have to check out your dancing ability every time we interact, even if I just went to the kitchen to get you the drink you asked for. When I come back, I can’t assume you remember you asked, you know what I’ve got, and you are going to agree to drink it.
“You have to be flexible, and that’s what people have trouble with. You have to dance. You’re always dancing verbally, visually and with movement, in order to stay connected.”
But the dance isn’t just for the person with dementia.
“It’s the same kind of dance I have to do with the family caregiver who is really burned out.”
Here’s how flexibility works—“If you were to put your hand up against someone and start pushing, without thinking they’ll start pushing back.”
Teepa Snow with Dorothy Colby of Hale Kū'ike, demonstrating how NOT to interact with a dementia patient.
By pushing, you’re making it harder for the other person to accept the help you’re offering.
First of all, quit pushing. And acknowledge that you were pushing.
“Say, I’m sorry, I was trying to help, And sound like you mean it.”
The first thing you need to do is figure out what you’re dealing with. If it’s early-stage dementia, try to get the person to tell you what’s going on in their head. Snow says half the people who get dementia have awareness of it and they’re scared, frustrated, or sad.
Half have no awareness because of the damage to the brain.
Yes, it’s hard. But stop shoving because your loved one will put up barriers, and then you can’t help.
This is only a tiny part of what Snow had to say to local caregivers. Harrison says they’re already working on bringing her back.
In the meantime, he shared a list of local resources for you if you’re looking for help:
**If you want actual training, Dorothy Colby, a certified Positive Approach to Care Trainer and Mentor, offers a number of dementia workshops and classes. http://www.dorothycolby.com/.
*Elderly Affairs Division Senior Helpline: 768-7700.
*The Elderly Affairs Division of the Department of Community Services, City and County of Honolulu, for a senior information and assistance handbook. Access it and other publications at https://www.elderlyaffairs.com/site/449/publications.aspx.
*Senior Information & Assistance PDF Handbook (2018 Edition): https://www.elderlyaffairs.com/Portals/_AgencySite/docs/Senior_Handbook_2018.pdf.
*Family Caregiving Guide (Most recent edition, May 2016): https://www.elderlyaffairs.com/Portals/_AgencySite/docs/Family_Caregiving_Guide_2016.pdf.
*"Deciding What's Next and Trying to Remember," a legal handbook for Hawaii's elderly, families, and caregivers-- available at the University of Hawaii, William S. Richardson School of Law (808) 956-6544) or at the Elderly Affairs Division, City & County of Honolulu (808) 768-7700. See also: https://www.hawaii.edu/uhelp/publications.htm.
*The Alzheimer's Association for resources and information. Their website can be accessed at https://www.alz.org/.
I know it’s daunting, I know it’s not enough. But I hope this helps you get started. You and all the unpaid caregivers in Hawaii are heroes.