Caregivers need care, too
Story and photos by Susan Mikula Campbell
We pulled on plastic gloves with the fingertips filled with corn kernels, donned glasses that distorted our vision and tried to follow and write down a series of instructions delivered only once while the room was darkened and distracting noise was broadcast.
Relatives of people who have Alzheimer's disease and its related dementia gained a new understanding of what their loved ones are going through at a recent Dementia Sensitivity Training for Family Caregivers program at Northgate Health Care Facility in Wheatfield. The seminar was presented by the Alzheimer's Association of Western New York.
For a reporter used to taking notes in all conditions, whether wearing mittens or in darkness, my writing was at least legible (to me), but the groans of my classmates combined with the background noise made me miss some of the instructions. I gained a new understanding of and patience for what my dad must go through when more than one of his kids is yakking at him at the same time, and why a simple task such as signing his name can be an exercise in frustration.
The Alzheimer's Association defines dementia as a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer's is the most common type of dementia.
"It (dementia) actually impacts a lot more of people's daily functioning. It's not just memory loss. It impacts all of their senses," said Meghan Fadel, director of education and training with the Alzheimer's Association of Western New York.
She challenged us to look at the world through the eyes of someone with dementia. Ever try to trace your way through a maze puzzle with your eyes closed, following the directions of a partner? We did that, and more, and found ourselves in a maze of confusion.
"It felt like basic training ... sensory overload," one man said.
Asked if our loved ones were seeing things that were not really there or believing things that were not true, just about every hand in the room went up.
Fadel told of patients who wouldn't eat because they thought there were ants in their food (pepper flakes) or who wouldn't bathe because there were snakes in the shower (the cord to the shower head).
The No. 1 trait needed with a dementia patient is patience, Fadel said. Sometimes a patient might have trouble finding the right word to use; don't just jump in and talk over them. We're used to talking fast. "Try to give them a little bit of extra time," Fadel said.
Normal conversation has a lot of give and take. A conversation with someone with dementia should be more statement-based and keep it slow, leaving pauses where if the patient is able to, they can jump in.
Avoid testing them, such as asking what did you do for lunch? "They lose that short-term memory first. It puts them on the spot and could just make them more uncomfortable," Fadel said.
"They have good days and bad days. It's not them being difficult," she added.
Things that we normally don't even think about can make a difference to a dementia patient. None of us had ever considered how many different steps there are to just getting dressed or undressed.
Reflective surfaces could look wet. Some might still think of themselves as being young and when they look in a mirror think the old man shown is a stranger in the house. A noise in the night, maybe the bleep of a neighbor's car alarm, can translate to someone trying to break in the house.
"Go with it, provide reassurance, but avoid arguing at all costs," said Fadel, using the example of a woman with dementia wanting to go home to take care of the kids, even though she already was in her own home.
Validation would be, "Of course you're worried; you're such a good mom." Redirection would be saying, "Tell me more about your kids" or going off topic and saying something like, "I love music. I would like to take lessons." A therapeutic fib might involve entering her reality and saying, "I know the kids are fine. While I'm here, let's go get ice cream."
It's also very common for patients to hide things, sometimes things you wouldn't expect, such as a toothbrush. Keep extras on hand.
Most of us agreed that at times we've wondered if Alzheimer's is "catching" as we find ourselves being more forgetful. It's probably stress. Age is the biggest risk factor for the disease, Fadel said, although scientists have discovered there is a genetic link that increases the risk for those who carry those genes.
Fadel also warned us that a single caregiver trying to do everything by herself is actually more likely to pass away before the loved one. On average, Alzheimer's lasts four to eight years, but can last 20 or more years.
"Please, please reach out to us (the Alzheimer's Association). We can brainstorm with you on the particulars of your case," she said, noting that care consultations with individuals or a group of family members are free. "You'll be better caretakers if you make time for yourselves."
Contact the Alzheimer's Association of Western New York at 2805 Wehrle Drive, Suite 6, Williamsville, NY 14221, or email [email protected]. Go to the national website at www.alz.org, or call toll-free anytime day or night at 1-800-272-3900.