10:30 sharp. Green cup with the cracked glaze. Half teaspoon sugar, half teaspoon Equal. That's how Miss Johnson takes her tea every morning.
When someone suffers from Alzheimer's disease, there are a million potential obstacles that can turn simple daily rituals like this one into a real challenge for caregivers.
According to recent reports, an estimated 5.4 million Americans suffer from the disease, and more than 15 million Americans provide unpaid care for a person with dementia. Because dementia is such a powerful disease of the everyday, I thought it would be helpful to look at the ins and outs of caregiving through the lens of a daily ritual, to keep something as harmless as morning tea from growing into a monumental exercise in frustration.
Gale Storm, a nurse and manager of education for home health aides at Partners in Care, where I work, offers this compassionate rendition of how a caregiver might smoothly and successfully begin the daily tea ritual:
Miss Johnson, I've been with you for two weeks as your home health aide. I'm Sandy, you remember. I notice you like your tea at 10:30, in this green cup. I think I can get the sugar-and-Equal amounts right. Is that how you'd like it this morning?
Tucked into this simple exchange (which very few of us in the crossfire of caregiving will ever get perfect) are seven tricks of the trade that combine into something we might call patience, probably the most valuable and elusive currency of caregiving.
1. Emphasize familiarity. I'm Sandy, I visit you every day... Take every opportunity to reorient the client or loved one to person, place and time. This breeds familiarity and a sense of safety, paramount to a person with dementia. Even with a family member, a dementia patient benefits from simple reminders every time you walk in the room. Hi Gram, it's me, Amy. I'm on summer break from college, and I'm spending the morning with you. If you arrive looking different -- with a new hairstyle or a business suit when you usually wear jeans -- make a note of it. It's me, Amy, with a new, short haircut.
2. Be observant. In the conversation about Miss Johnson's tea, the aide introduced the morning ritual by saying, "I notice." Because familiarity can soften the agitation of dementia, successful caregiving depends on careful observation. Observe favorite foods so you can maintain a successful menu. By the same token, observe whether the person you're caring for prefers variety in day-to-day meals.
It also helps to observe which times of day correspond to increases in clarity or confusion. Often, dementia patients wake up confused, rise to a level of lucidity mid-morning, and decline again around sunset (also known as sundowning). During the periods of extreme confusion, avoid confrontation and expect more repetition.
3. Practice good communication. Conversations are certain to get repetitive, and when that happens, active listening and touching on different points can be helpful as a conversation loops around again and again. Clarification and rewording the question go a long way, too. You mentioned you want this blue sweater. Do you want to wear it even though it's 90 degrees outside today?
It helps to remember that you can pause in the course of conversation as well. "Sometimes the other person needs time to think," says Gale Storm. "So give them that chance. You don't have to fill all the silences." That is a common temptation when conversing with someone with dementia.
4. Seek input. Asking for your loved one's input helps foster engagement and dignity. Give suggestions -- Its 84 degrees and humid, so let's wear short sleeves -- but let the elder have a say in which shirt, which light skirt. When you go to the store, ask for input. Should I get the DelMonte corn, or whatever brand is on sale? White bread, wheat bread, or whatever's on sale? Have your loved one write the list or count out the money, if appropriate.
5. Let go of expectations. Gale points out that just because Miss Johnson has had her tea this way every morning for two weeks does not mean she will want it that way today. Alzheimer's is a disease that keeps confounding expectations. Levels of memory loss and lucidity can fluctuate greatly from day to day; the only constant is change. My own mother suffered from Alzheimer's, and letting go of expectations -- both day-to-day and those that were formed over a lifetime -- was one of the most difficult things to accept in caring for her -- and caring for myself.
6. Be aware of your tone and facial expressions. No matter the level of your loved one's dementia, he or she will always respond to tone of voice or facial expression -- the very things a well-meaning but stressed caregiver might overlook. Even if you have to fake it till you make it, try to keep an encouraging tone to your voice and a smile on your face (or at least a neutral facial expression). "You can say the exact same thing, but it's a world of difference whether you're saying it with a smile or a frown," Gale reminds us.
7. Know when to walk away. One of the most important things you can do for yourself as a caregiver -- especially when caring for a loved one with dementia -- is to know when to step away. If a situation has become combative or overwhelming, take a deep breath and step away (making sure the situation is safe to leave, of course). As Gale notes, "Taking three minutes to go into the rest room is a perfectly reasonable thing to do. Try to come back with a changed facial expression."
For More Information
While providing care to someone with dementia can be lonely, isolating and frustrating, you are not alone. For support and more information there are some helpful resources online: The Alzheimer's Association, Alzheimer's Disease Education and Referral Center National Institute on Aging, Alzheimer's Foundation of America, National Family Caregivers Association, and others.
Many communities have resources like the agency where I work that can help families navigate the many steps, including legal and financial, involved in caring for an aging parent.
Miss Johnson's name has been changed to protect her privacy.