The other day, when we were at the beach, I had the opportunity to observe a family with a dementia patient.
A father, suffering from dementia, was brought to the beach with his wife, his sister-in-law and daughter. The women had carefully, and with painful slowness, gotten him from the parking lot, across the beach and seated in his wheelchair. After a while, the three women left the man to go swimming. While they were gone, he put on his baseball cap, his shoes, and got a bag of various items through which he was searching for something. In the process, most of the items in the bag went into the sand. After about 15 minutes, the daughter came out of the water to see what her dad was doing. She scolded him for dumping her phone and car keys into the sand.
Watching this scene as it unfolded, I was reminded of three principles of dementia caregiving:
1) Safety comes first. In general, it is not a good idea to leave patients with advanced dementia on their own in a public place. It’s difficult to know what the patient will do, and public places, such as an unfamiliar beach with lots of people, can cause anxiety and heightened confusion. Three caregivers came to the beach. A better choice would be for no more than two to go swimming at the same time so that the father was not left on his own.
2) Nothing is predictable. The fact that Dad hasn’t wandered, or grabbed a knife by the blade or had a car accident before now doesn’t mean it isn’t going to happen today. Think ahead in order to be prepared for the sudden change that makes your normal way of living a threat to your patient. Lock up anything that might be dangerous like guns—and ammunition— and kitchen knives. Don’t leave anything that’s dangerous if swallowed unsecured. This includes drugs, supplements and cleaning products. A better choice for the beach would have been to have items like the car keys and cell phone securely out of the father’s reach.
3) Let love, honor and respect guide your attitude and responses. In dementia caregiving there absolutely will be moments that are horridly frustrating or embarrassing. Even in those moments, please remember that your loved one hasn’t done what he or she has done to cause you problems. Hang onto the knowledge that their brains aren’t working properly. Handle them, and the difficult situation, without shame or blame. Rather than scolding her father for dumping her phone and car keys in the sand, a better choice would have been to pick up the items and put them somewhere so that it won’t happen again. Of course, the daughter was frustrated. Anyone would be in those circumstances. You can have your anger and frustration, accept them as normal responses, but if you’re guided by love, honor and respect, then you don’t express them to your loved one by scolding him or her. You can find somewhere else to vent.
These principles aren’t rocket science, but I know they are difficult to remember when there’s a crisis. Plan ahead to reduce the possibility of a crisis occurring. And when it does, do your best to look for solutions that incorporate love, honor and respect.
The 10 Absolutes
Never ARGUE, instead AGREE
Never REASON, instead DIVERT
Never SHAME, instead DISTRACT
Never LECTURE, instead REASSURE
Never say REMEMBER, instead REMINISCE
Never say I TOLD YOU, instead REPEAT
Never say YOU CAN’T, instead say DO WHAT YOU CAN
Never COMMAND, or DEMAND, instead ASK or MODEL
Never CONDESCEND, instead ENCOURAGE and PRAISE
Never FORCE, instead REINFORCE
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