Lots of people suffer from delusions. That guy in the jacked-up truck believes his morning rush is more pressing than yours, so he cuts you off without a signal. Charlie Sheen thought he was a warlock full of tiger blood, though he now seems less convinced. Dementia, however, produces powerful delusions that complicate caregiving in a million ways.
When considering the delusions that have troubled my mom, I’ve searched for patterns that could help me fight back. From what I can deduce, the recipe for a persistent delusion begins with a tiny shred of truth. She never has delusions about being rich or having a summer Christmas. Something unpleasant kicks it off. It could be as simple as a stranger speaking harshly or an appliance malfunction. Her disease embraces this bad moment. Instead of erasing the thought — as it has so many other memories — dementia embroiders a complex tapestry around it. Suddenly, instead of one unpleasant incident (which a healthy person might forget after dinner), the little scrap of unhappiness gets stitched into a vast pattern of disturbance that echoes without cease. After the mind has done so much work to grow a small fear into a giant, reality cannot win without a fight.
For a while my Mom believed that the occasional leak in our faucet meant that we were about to run out of water. She was afraid to use water, afraid we wouldn’t be able to take showers. Then she thought the toilet would overflow. Her fear of using the toilet pushed her to stop drinking water. The circle of magical thinking spiraled into a very dangerous practice of willful, self-dehydration. Fortunately this particular fear has now receded — but not without patient effort on my part.
Experts in the field warn that caregivers should not be confrontational when challenging a dementia patient’s way of seeing. The disease often limits their insight about their behavior. When you get pulled into an argument over the facts, you may end up expending your scarce energy without ever changing their actions. In the case of Mom’s water phobia, it took nearly a month of calm re-direction to defuse the power of her obsession. Whew!
Today I am thankful that her terrors have subsided. When she is calm and clear, she is a joy to be around. Her happiness is at least as infectious as her distress. I know we will face a slew of other strange suspicions in the future. I just hope Halloween won’t trigger any weird fears that can’t be erased by some candy.
My family has made the choice to keep my mom living at home for as long as possible. But some days can be trying. She wakes up in the grip of sad dreams and I have to lure her closer to some sense of happiness. Washing her, dressing her, and counting pills are chores that I now manage for Mom. Once she is prepped for the day, her determination to enjoy life often returns. She forgets that she was sad and remembers that she’s funny, cute, and worthy of love.
I know this phase of the disease will not last forever. Dementia erases a bit of her skill everyday and we will reach a point where her medical needs may exceed my caregiving abilities. Only then, will we consider placing her in residential care.
To get some advice on the question of choosing a nursing facility, I interviewed Dr. Neville Strumpf, professor emerita of the University of Pennsylvania School of Nursing. While she served as a nursing professor, Dr. Strumpf focused on gerontological care. She has written extensively about nursing homes and health interventions for the elderly. Although she’s been a professor, researcher, and Interim Dean of the school, Dr. Strumpf began her career as a nurse and she still looks at medical issues from a nurse’s perspective. My questions to Dr. Strumpf focused on how to choose a nursing home if a family member becomes too medically fragile for home care. She advised that caregivers should, “Definitely visit the places you are considering and get a good sense of the environment. Talk to a resident and ask them how they feel about living there.”
The big issues that seem to affect the quality of care at any facility have less to do with price and more to do with leadership and the skill level of the staff members. Dr. Strumpf observed that high priced private facilities can have just as many quality problems as publicly financed nursing homes. She says that the main factors that affect care quality are “good leadership, low staff turnover, and the capacity to develop individualized health assessments which will be followed up.
One key item to look for when touring a care facility is the schedule of activities offered for residents. Will their daily offerings engage your family member at a level that is appropriate to their remaining abilities? Will activities help them to maintain a sense of dignity and independence? If you tour a facility and see people sitting around in chairs they can’t escape from, you may be looking at a site that won’t offer its residents many reasons to stay alive or use their remaining skills. That truth may not be obvious when you look at a welcome packet or a website. So it’s very important to visit, ask a lot of questions, and see for yourself.
You should also ask about the number of credentialed nurses on staff and the extent of their experience and training. As Dr. Strumpf pointed out, “The salary levels at nursing homes are much lower than at hospitals and many nurses with higher credentials will pursue those higher paying hospital jobs.” But the fact that a caregiver does not have a Bachelor’s Degree in nursing does not mean they can’t deliver good care. Quality of care is usually driven by the supervisory standards of the site administrator. A site with a compassionate, experienced administrator may be the real jewel families should search for when they consider residential care options.