When memories fade
Dementia is terrifying. The idea that your mind might slip out from under you, taking your memory, your abilities and your independence with it, is something most of us prefer not to think about.
Yet, many people, both those afflicted and their families, have to. According to the Alzheimer’s Association, one out of every nine Americans aged 65 and older have Alzheimer’s disease, by far the most prevalent type of dementia. By age 85, that number is one out of three.
“Very few people don’t have some experience with dementia,” says Margaret Bandy. She should know. Bandy has been involved with Amazing Place, a Houston day program specifically for people with mild to moderate dementia, since its founding in 1996 and served as its executive director for several years. Now, she attends its program two days a week.
Though you would never know it by talking to this intelligent, articulate, social woman, Margaret Bandy has dementia. She can quickly, with wit and charm, tell you all about dementia and Amazing Place, but later that day, she might have no memory of that conversation or of you.
Dementia is a set of symptoms that can be caused by a number of medical conditions. It is defined as a decline in memory or other thinking skills severe enough to interfere with daily life. While there are some reversible conditions, such as a hormone imbalance, that can cause dementia symptoms, most dementias are not curable, and most do progress. The exact symptoms, their severity and their rate of progression can vary: While Bandy’s symptoms are mild, Leigh Vasnin’s 90-year-old mom, Lillian Whalen, often does not recognize her daughter or know where she is. “Basically, reality is generally gone for her,” says Leigh. Participants at Amazing Place range in age from 53 to 98.
Amazing Place, a state-licensed, 501(c)3 non-profit, offers its program Monday through Friday from 7:30 a.m. to 6 p.m. Participants decide how many days per week to attend. Tuition is about $80-90 per day. Some long-term care insurance policies cover it, and Amazing Place is a service provider for the Veterans Administration. Amazing Place also offers financial aid to families who qualify.
What Amazing Place offers its participants is a safe, comfortable place to interact with people and take part in interesting activities. Fitness classes. Book clubs. Gardening (in raised flower beds on wheels for easy access). Even golf and basketball. (Amazing Place has its own putting green and basketball hoop.) Participants can take cognitively stimulating classes, covering subjects from art and woodworking to Bible study, history and international studies. They can play games, from bridge to billiards, go on excursions, such as a recent trip to an IMAX theater, and watch visiting entertainers.
In 2010, Amazing Place moved into its current, 14,000-square-foot building at 3735 Drexel, near Richmond and Weslayan in the Greenway Plaza area, designed specifically for the program. Its rooms, such as its chapel, complete with modernist stained glass, its art studio and its recreation room, outfitted with game tables, a pool table and a bank of computers, feel spacious but also intimate and comfortable. The building’s shady 4,000-square-foot garden is home to a koi pond and waterfall (raised for easy viewing) as well as the basketball hoop, putting green, a shuffleboard court, a walking path and comfortable wooden benches.
Amazing Place’s staff of 25, taking care of about 58 participants a day, plan every aspect of each activity carefully. “Participants don’t realize all the thought that goes into everything, but they do feel it and appreciate it,” says Margaret Bandy. For the daily lunch, for instance, culinary director Michael Lieb creates brain-healthy menus, the seating arrangements are carefully planned for maximum socializing, and staff members sit at each table of eight, to facilitate conversations.
When Jenni Elliott, a retired school librarian, picked up her husband John, a retired geologist, after his first day at Amazing Place, she asked him what he thought. “He said, ‘They treat you like you’re something precious,’” she says.
“Amazing Place does as much for the caregiver as it does for the participant,” says Ronald Bandy, Margaret’s husband. While, of course, one of the biggest benefits to caregivers is knowing that their loved one is being well-cared-for when they must leave them for work, other tasks or to take a much-needed break from the round-the-clock care a person with dementia can need, Amazing Place offers other support to them as well, including a six-week class, called Powerful Tools for Caregivers, held three times a year. Jenni Elliott took that class and continues to meet with her former classmates in a support group every couple weeks, staying in touch with them, via their own Facebook group, as well. The group meets in a private room in a restaurant “where we can laugh, scream, cry, whatever we need to do,” says Elliott.
Brianna Garrison, a licensed clinical social worker, is Amazing Place’s family services director. She provides counseling of all sorts to families, from the practical, such as what the next step should be when their loved one’s dementia progresses, to the emotional. “We want to give caregivers a safe place to talk about what they are going through and to have them not be afraid to seek support,” she says. Betsy Bates, for example, asked Amazing Place counselors to talk with her twin teenaged daughters about their father’s disease and how it affects him. Caregivers can have such “a feeling of loneliness,” says Betsy, as they come to terms with their loved one’s diagnosis.
Both Garrison and Tracey Brown, Amazing Place’s executive director, urge people in the community who may be dealing with dementia to consider Amazing Place an information resource. “If you need help, you don’t necessarily have to attend here, we will still help you,” says Brown.
Leigh Vasnin, whose mother does not always remember who she is, has come to a sort of peace. “I don’t take it personally. I know it’s her brain changing,” she says. “I know that, for as long as she could, my mother knew me and loved me.”
How to talk with someone with dementia
Realize that you may encounter people with dementia anywhere. “People with mild to moderate dementia are out and about in public, in grocery stores, on planes, and they don’t look sick,” says Sally Davis, Amazing Place’s health services director. Davis knows of families whose loved one might act inappropriately who carry cards to discreetly inform people, “Please excuse my mother’s behavior. She has Alzheimer’s.” Jerry Bates, an Amazing Place participant, says that his experience has taught him “‘the importance of being kind to everyone as you never know when you’ll need someone to be kind to you.’”
“Don’t be afraid to talk to them and engage them; that’s what they’re hungry for,” says Tracey Brown, Amazing Place’s executive director. People with dementia fear not being able to keep up in conversation and withdraw, becoming isolated and lonely. Jenni Elliott, whose husband John attends Amazing Place, remembers a “spectacular” young woman they met at a Christmas party a few years back. What did that young woman do? “She went and sat next to my husband and engaged him in conversation,” says Jenni.
Don’t correct their errors. If they say they just had a visit from a long-dead relative or they believe they’re on a cruise ship, go with it. “Meet them where they are,” says Davis. Likewise, avoid the temptation to “memory-test” them or to remind them of an important memory, hoping to rekindle it.
Ask about emotions rather than facts. Ordinary conversation can contain a lot of specific questions. With a person with memory loss, switch the focus to how the person feels. “Rather than ‘What did you do today?’ ask ‘Did you have a good day?’ Instead of ‘What did you have for lunch?’ ask ‘Did you enjoy lunch?’” says Brianna Garrison, Amazing Place’s family services director.
Ask what their childhood was like. Most often, recent memory is what is affected by dementia, but a person’s memories of the distant past remain intact. Miah Arnold, a writer with a doctorate in writing and literature, in conjunction with Inprint, a literary non-profit, leads memoir-writing classes at Amazing Place, in which participants produce beautiful essays about their earliest memories.
Some helpful books on dementia
Some helpful resources
For more information on Amazing Place, visit its website or call 713-552-0420.
The Alzheimer’s Association provides a wealth of information, including local resources. 24-hour helpline: 1-800-272-3900
Sheltering Arms (713-685-6577) is a non-profit that provides a number of services for the elderly and their caregivers, including its own day program specifically for people with dementia.
The Alzheimer’s Disease and Memory Disorders Center at Baylor College of Medicine, here in Houston, provides diagnostic and clinical care for patients and also conducts research into promising therapies, 713-798-4734.
Twice a year, St. Luke’s United Methodist Church, which originally founded Amazing Place, presents a free caregiver conference, in partnership with Interfaith CarePartners, to give families information, resources and support about caring for an aging parent or spouse. For more information, call 713-402-5008.
Worried About Your Memory?
By Sally Davis, MSN, RN, Amazing Place Health Services Director
Eight Common Reasons For Memory Lapses
- Normal Aging Changes
- Chronic Stress
- Thyroid Problems
- Excessive Drinking
- Head Injury/Concussion
Five Signs of Memory Loss That Could Be Serious
- Your memory problems frighten you.
- You have changed how you work or play.
- Your family expresses concern.
- Friends and family start to cover for you.
- You find it hard to make choices.
Symptoms of Dementia
- Mismanaging money
- Asking the same question repeatedly
- Becoming lost in familiar places
- Unable to follow directions
- Disorientation about time, people and places
- Neglecting personal hygiene and nutrition
- Withdrawing from activities
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