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Sep18WedFor the more than half a million Canadians living with dementia, the world can be a confusing and frightening place. During World Alzheimer's Month, a family shares their personal experience with this all-too-common disease. September 18, 2013 by Melissa Yue Wallace
Every afternoon, 90-year-old Roland Downton visits his 87-year-old wife, Frances, at a nursing home in Grand Falls-Windsor, N.L.
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During their 64 years of marriage, they have raised three loving children and weathered various health ailments by each other's side. But Frances has trouble remembering all of that. For the past eight years, she has battled a common form of dementia called Alzheimer's disease, an irreversible, progressive brain disorder that gradually destroys memory, judgment and thinking skills.
Through Frances' youngest son, Clyde, and her eldest daughter, Lt-Colonel Verna Hynes, the family share their experiences as caregivers of a loved one who can't always remember what happened minutes ago, but can effortlessly recite Scripture and Salvation Army choruses from the past.
It was late in 2005 when Frances' family noticed her memory beginning to fade.
“She would turn on the oven, sit down and forget what she was going to do,” says Clyde. “As months passed, it was getting worse and she would ask the same questions over and over.”
“We'd take her for a drive around town and she'd only recognize places dating back to her childhood,” adds Verna. “Another time she was looking for a recipe for macaroni and cheese even though she hasn't used one for years!”
In 2006, a doctor confirmed what the family had already suspected. Frances, a retired Grade 5 teacher, had Alzheimer's disease. There are currently 747,000 Canadians living with Alzheimer's disease and other dementias, according to the Alzheimer's Society of Canada. The number has been increasing every year due to the nation's aging population and the fact that people are being diagnosed earlier and more often. The society estimates that, by 2031, this number will increase to 1.4 million.
After receiving the diagnosis, Roland continued to care for his wife, but began having difficulties with daily tasks. As a solution, their eldest son, Bruce, and his wife moved into the family home. Roland and Frances appreciated the comfort they had in knowing help was close by and relocated to the basement apartment of the house to give the younger couple their independence.
The arrangement worked well until Frances' symptoms worsened.
“Every evening, just as it was time to settle down for sleep, she'd ask my dad for an aspirin or she'd say she wasn't feeling well,” says Verna. “By this point, he'd been cooking meals and doing everything for her and was exhausted.”
Reluctance to Change
In February 2007, Frances collapsed and was taken to the hospital, possibly due to a mini-stroke. The next morning, a nurse brought a pan of water so Frances could wash her face and hands before breakfast. As Frances got up and took the pan to the sink to empty it out, she slipped and broke her hip. After the surgery, she was in the hospital for four months. Doctors told the family that Frances couldn't return home and needed assisted living services. After discussing and praying about their options, they decided to move Frances into a personal care home in June so she could maintain a level of independence, but have staff available to help with daily activities and manage tasks such as cooking and washing clothes.
“The initial decision to put her into a home was very difficult,” says Clyde. “But we knew it was dangerous for her to stay in her own home because she'd forget doing things like turning the oven on that could injure her or my father.”
Unfortunately, the transition from the hospital to the personal care home was immensely painful for all involved because Frances couldn't understand why she couldn't return to her own home.
“My mother was always a well-balanced, level-headed and calm person,” says Verna. “I rarely saw her angry or heard her raise her voice. But she went into that home and was constantly in tears.
“There were some days she'd have sporadic episodes of anger that just floored us as a family. It was so out of character for her.”
Roland felt tremendous guilt and went to see his wife every day. By the end of July, he moved into the personal care home to be with her and the couple stayed for five years.
“They would sit in the lounge, do puzzles and have conversations with people,” says Verna. “That's just how things were in those days.”
As Frances' condition progressed, she became upset and confused more frequently. She was perplexed about what to do during meals and had to be prompted to eat. Her mobility also slowed down.
The family would take Frances out for church services and to celebrate birthdays and special events. During one service at Park Street Citadel in Grand Falls-Windsor, Clyde, who serves as a corps sergeant-major, was introduced as a soloist.
“Mom leaned over to Dad and said, 'Didn't we have a son named Clyde?' ” recalls Verna. “Dad told her, 'That's our son.' She didn't recognize him and cried uncontrollably. They had to get Clyde to go down and sit with her.”
Though her cognition declined, Frances continued to praise God. Every evening, she and Roland would do their devotions consisting of Scripture reading, prayer and listening to tapes of services or hymns that Frances was familiar with.
“My dad would play the tapes mostly in the evening because she had 'sundown syndrome,' ” says Verna. People with sundowning experience a worsening of dementia symptoms such as confusion, agitation, aggression and wandering in the late afternoon, evening or night. But the music and words of the Bible would bring Frances peace. “She loves to sing and still, to this day, can remember every hymn.”
Given Frances' emotional upsets, Roland began to withdraw from others in the lounge and would instead tire himself out and do everything he could to help her on his own. In March 2012, Frances was moved to a nursing home so she could have constant access to registered nurses and health services.
Settling Into a New Reality
Seven days a week from 2 to 4:30 p.m., either Bruce or Clyde take their father to visit Frances in the nursing home lounge. Most of the time she recognizes them, but can't always recall events from 30 seconds ago.
“Usually when we get there, she's sitting and looking at the door,” says Clyde. “Even though she may not be thinking about us coming, there's something about the door that she focuses on, like she knows something's going to happen.”
The nursing home organizes games and activities, but what Frances particularly enjoys is when groups from churches and corps visit, conduct a service and worship.
“When they're singing hymns or gospel songs, that's when she is the happiest,” says Clyde. Occasionally, a group or event will cancel and Clyde will improvise. “We have a CD player in her room and a number of recordings from the corps, so she and I will sing chorus after chorus for an hour.”
The family is grateful Frances' medication has helped to slow down the disease. They have met and seen others who have quickly deteriorated in the nursing home and Clyde has encountered many people in his corps with dementia.
“When I pray for them and for my mother, I mostly pray that they won't have to suffer,” he says. “Not remembering can be very frustrating and it's a form of suffering in itself. It can also rob you of your dignity.”
Regardless of the trials of Alzheimer's, the family has remained steadfast in their faith, following Frances' example of praising God in all circumstances.
“Whether you're a Christian or non-Christian, people have to go through these types of things,” says Clyde. “The Lord never said life would be a rose garden.”
“God has answered so many of our prayers—the wonderful care from staff, doors opening for the nursing home, a smoother-than-expected transition from the personal care home to the nursing home,” says Verna. “And spiritually, I know all is well with my mother's soul and the Lord will take care of her and her needs.”
An interview with Mary Schulz, education director at the Alzheimer Society of Canada
What do caregivers need to know when a loved one is diagnosed with Alzheimer's disease or another dementia?
This is a disease that is not good to cope with on your own. It can last more than 15 years and takes a lot away from the caregiver. If you have a hard time, it doesn't mean you're a failure; it means you're just like everybody else who is dealing with it. This is a marathon, not a sprint. So ask for help and ask for it early on.
How can we reduce our own risk of developing dementia?
One thing people can do is develop a healthy brain lifestyle. It's not a magic bullet, but we know that what is good for our heart is good for our brains. A healthy diet and a moderate degree of exercise every day is part of living a healthy lifestyle. It's also important to keep our brains stimulated. This might look different for different people. It might be challenging for me to do a crossword whereas for you, it's a piece of cake. We need to find things that can help the brain to be more nimble, flexible and stronger.
How should we talk to someone with dementia?
We need to accept the person the way they are and enter their reality instead of asking them to enter ours. For example, when I visit someone in the later stages of dementia, they may not know who I am and may say, “You're my daughter. Why don't you take me home?” I shouldn't say, “I'm not your daughter and your house is sold, so I can't take you home.” That's going to agitate and make the person sad because they may truly believe I am their daughter and for me to say otherwise seems like a blatant lie. Instead what I might say is, “Tell me about your daughter. Tell me about your house. What did you used to do in the house?” Start by talking about feelings and emotions related to those things rather than the facts because, at the end of the day, facts don't matter. It's a way to engage without having to confront reality.
(Top photo: © iStockphoto.com/SallyLL)