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He has to give her a bath, not a shower, which is too disorienting. When the St. John’s, N.L., couple goes grocery shopping, Agatha, 56, takes her own cart, but 59-year-old Paul keeps her in sight at all times. At night, he tucks her right under the bedsheets – otherwise, she slips under just the top quilt and later wakes up cold.
In his four years as Agatha’s primary caregiver, Paul has also learned how to support himself. Agatha has her hair done every Monday at the day program she attends three times each week.
Relatives regularly trade off care. It seems like such a long way off from when Paul first started noticing how Agatha would be convinced she had left the iron or stove on any time she went out, or how she would increasingly struggle to remember where she put her keys or purse.
Even Agatha’s colleagues at the doctor’s office where she worked noticed her growing forgetfulness. Like Paul, you may be the caregiver of a loved one with Alzheimer’s. We asked readers who have had to learn about this disease to tell us their most pressing questions, and we sought the answers.
Question 1: I suspect my dad has Alzheimer’s. What are the signs and symptoms of the disease?
Is Dad having trouble finding words? Does he keep forgetting about the kettle he’s put on for tea? The inability to grasp words and failing to remember how to do daily tasks are two symptoms of the disease, according to the Toronto-based Alzheimer Society of Canada.
Other red flags include misplacing items, being disoriented about dates and times, and having poor judgment, mood swings, a change in personality, and an unwillingness to participate in social activities or even tasks at home. Other behavioural changes might develop later on, such as occasional confrontational behaviour, repeating actions, having fear and suspicion of others, and wandering.Question 2: Should I encourage my mom to share her diagnosis with friends and family?
Yes – and do it together, suggests Shirley Lucas, executive director of the Alzheimer Society of Newfoundland and Labrador. Try saying: "We have news to share. Mom has been diagnosed with Alzheimer’s and we’re not sure how this journey will proceed. We'd like you to share this journey with us and we’re hoping to have your support along the way."
Question 3: I’m moving my mom in with my family. How can I make my home safe for her?
There are a number of steps to ensuring your home is safe, including installing hook-and-eye locks near the tops of doors and grab bars in the bathroom, removing rocking chairs, placing sharp kitchen tools out of sight and securing cupboards with safety latches. The Canada Mortgage and Housing Corporation has a full home-safety list at cmhc-schl.gc.ca.
Question 4: I want my kids to have a relationship with their grandmother, who has Alzheimer's. How can I help them connect with her?
"Sometimes people with the disease relate better to kids, because kids don’t expect them to act a certain way," says Lucas. Encourage simple games if Grandma is able to participate, or just have your kids talk with her about what’s going on in their lives.
"Remind your children that while Grandma has a disease of the brain that makes her unable to say the things she used to, she still needs to be reminded of how much they love her," says Lucas.
Question 5: My sister-in-law is caring for her dad, who has Alzheimer's. How can I offer my support?
Join her caregiving network, suggests Lucas. "It's hard for caregivers to ask for help because they don't want to impose on people," she says. Propose a regular time each week when you can stay with her dad, or offer to drive him to appointments or his day program if he has one.
Question 6: As a caregiver to a mom with Alzheimer's, I often feel overwhelmed. What resources are available in my community?
The Alzheimer Society has regional branches, so its website (alzheimer.ca) or local office is the first place to look, says Lucas. You can also find information on housekeeping help and individual caregiving options, including hiring a geriatric care manager.
These caregivers help families coordinate day-to-day tasks, doctors’ appointments and more. Your mom's physician might also have information on services such as support groups for family members and day programs where your loved one can spend time outside of the home.
Question 7: How can I ease the stress I feel as a caregiver?
Fatigue looms over the heads of caregivers, so building your support network helps you fit in rest. "Caregivers who try to do it all themselves will burn out," says David Troxel, coauthor of A Dignified Life: The Best Friends Approach to Alzheimer's Care, A Guide for Care Partners (HCI, $18).
"If you use the community services and get help from friends, you can come out of this feeling successful and proud, not exhausted."
Paul Penney says that while Alzheimer's is a challenging disease, it doesn't mean the end of a relationship. After all, he and Agatha still cook and shop together. Once in a while, the two might even have a glass of wine while listening to a Neil Diamond or Rod Stewart record.
"That person is still there," says Paul. "Just remember that you've had good times, and you have good times ahead of you too."
500,000 - the number of Canadians who have Alzheimer's disease or a related dementia. (More than 71,000 of Canadians living with dementia are under age 65; of that number, 50,000 are under 60.)
1.1 million - The projected number of Canadians who will be living with Alzheimer's disease or a related dementia within 25 years.
72 - The percentage of Alzheimer's disease patients who are women.
1 in 5 - The lifetime risk of Alzheimer's disease for women over age 65 (it's one in 10 for men).
36 - The percentage of Canadians who know someone living with Alzheimer's disease.
17 - The percentage of Canadians who have someone with Alzheimer's disease in their immediate family.
36 million - The number of people worldwide believed to be living with Alzheimer's disease or dementia. That number is projected to increase to almost 66 million by 2030 and 115 million by 2050.
5 - The percentage of all cases of Alzheimer's disease that are believed to be hereditary.
|This story was originally titled "Alzheimer's" in the March 2013 issue. |
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