Maintaining Independence with Dementia
Shelley Butler says she’s “fiercely adamant” about maintaining her independence.
The 54-year-old Brandon resident was diagnosed with dementia in December 2012.
“It knocked me off my socks for about four months. I just sort of shut myself aside and didn’t see anyone or talk to anyone. I didn’t want anyone to know,” Shelley says.
But Shelley says she realized after a few months that sitting around in her apartment wasn’t how she wanted to spend her life.
“You have to be positive,” Shelley says. “I’m living my life the best I can.”
Shelley strives to maintain an active lifestyle. She exercises daily, rides her bike, swims, runs, and eats healthily.
“My doctor says I’m healthy as a horse,” Shelley says.
In addition to keeping physically active, Shelley also volunteers in the community as a reader at the Brandon Literacy Council, a job she started earlier this year.
“I was a teacher once – an English Literature Professor. This is something I can do. It makes me feel like I’m still in the loop, like I’m still viable,” Shelley says.
Though Shelley is extremely independent, her mother, who is very involved in her care, is concerned that Shelley may get disoriented and lost when she’s out and about the city.
Shelley says that shortly after she was diagnosed this happened on one occurrence. Now, Shelley carries around a GPS in her purse so that her mother is able to keep an eye on where she is.
At first, Shelley says she didn’t like the idea of the GPS as it made her feel less independent. Now, she’s come to understand the need for it.
“My parents are trying to do the best for me,” she says.
Even though Shelley tries hard to stay positive, she says some days are more difficult than others. Sometimes though, she says she feels like the person she was before her diagnosis.
“It’s just weird knowing there’s something wrong with my brain and it screws me up sometimes,” Shelley says. “I just do what I can do.”
And Shelley says she enjoys what she’s doing right now – staying active and involved in the community.
“I enjoy my free time, it keeps my mind going,” she says.
Shelley also works hard to make people aware of dementia and tries to speak out about her dementia as often as she can to help educate others.
“I’m very, very vocal. I try to (speak up about dementia) at every moment and say ‘this could happen to you’,” Shelley says.
“The Experiencing Dementia program is an opportunity to unite different people journeying on a similar course,” says Maria Mathews, Manager of Client Support at the Alzheimer Society.
Mathews created Experiencing Dementia, a program that supports people with dementia, caregivers, families and communities.
She developed the program because she saw a need. People with dementia, caregivers and families typically go through separate education sessions. Mathews took an opportunity to make things inclusive.
“I want to bring inclusiveness into this arena so people aren’t just identified as ‘caregiver’ or ‘person with dementia’. We’re families and communities – recognizing this unity is what the program focuses on,” says Maria.
Experiencing Dementia is an eight-week program that began last fall. The program educates people with dementia, caregivers and families together – in the same room, at the same time. Mathews says educating everyone together gives everyone the opportunity to be heard.
Cathy Hurd’s husband, Tom “Boz” Carter, has Alzheimer’s disease. Cathy and Boz participated in the Experiencing Dementia program in January 2013.
“Boz was hesitant at first,” says Cathy. “But after our first session, he came home with a smile on his face, and said he really liked it and wanted to go back. He felt secure going with me,” says Cathy.
Cathy says going through Experiencing Dementia was a blessing. Boz likes to socialize, and the program allowed him to do so alongside his wife.
Maria says the program teaches people with dementia, caregivers and families how to re-engage in their relationships. Caregivers learn to see the person with dementia as more than just a person they have to care for, and people with dementia learn their caregivers aren’t nagging them, they’re simply being supportive.
Experiencing Dementia occurs in weekly meetings on Wednesdays in the fall and Thursdays in the winter. The program provides education and support. Mainly, it helps participants understand that even after a diagnosis of dementia, there’s still a lot of living left to do.
“We can lose our roles as partners as we deal with dementia,” says Maria. “Dealing with dementia is a marathon, not a sprint. Dementia affects families, communities and society. Experiencing Dementia brings people together, teaches them about the disease and gives them time to learn.”
Cathy recommends Experiencing Dementia to other caregivers and people with dementia. She’s grateful for the valuable information she learned to prepare for the road ahead. Perhaps more importantly, though, she learned to reconnect with her husband.
“You may have lost pieces of your spouse, but you’re reconnecting and taking the journey together”, says Cathy. “The program allows you to say to your spouse ‘You’re not alone. You’re here, I’m here, we’re here together’.”
Benefits of Stay Active
For many, a favourite summer activity is packing up the car and heading out to the lake. Now that summer is here you may be wondering if it’s a good idea to take your friend or family member with dementia with you.
Activities that were important and meaningful throughout a person’s life will continue to be important and meaningful as dementia progresses. Going out to the family cottage may be one of them.
Maintaining long enjoyed activities can give a person with Alzheimer’s disease or another dementia pleasure and boost confidence. Sometimes these activities may need to be adapted to meet changing interests and needs. However, remaining physically and mentally active can provide a distraction from the stresses of dementia and help to focus on the positive, fun aspects of life.
If you are considering taking a friend or family member with dementia to the lake with you, here are a few safety tips and suggestions for staying active:
- On the way: Often times, trips to the cottage require a fair bit of time in the car. Playing music and stopping for ice cream can make the experience more enjoyable. However, if you are driving and a person becomes restless, pull over. Don’t try to calm the person and drive at the same time.
- When there: Try to keep things as familiar as possible. Keep bedtimes and meal times as close to routine as you can. Bringing a few of the person’s favourite things helps promote comfort.
- Structure isn’t necessary: While the word “activities” is often associated with structured group activities such as bingo or exercises, this isn’t always the case. Many beneficial activities are the simple, everyday tasks we take for granted and may be done as a solitary pastime or with a few friends or family members. At the cottage, activities can include small chores, helping prepare dinner or weeding the garden.
- Suggested activity – walking: Walking is a great form of exercise and can provide both a change of scenery and fresh air. Short walks to the beach, or to get a coffee from a favourite coffee shop are enjoyable options.
- Suggested activity – swimming: Swimming is a good way to stay active and the feeling of being in the water can be invigorating for a person. People with dementia and their caregivers are reminded to never swim alone.
Food is an essential element for living.
The nutrients food provides allow the body to function well. Food preparation is an integral part of enjoying mealtimes.
If meals feel like an added chore in your care giving responsibilities, consider the following tips to ease some of the worries you may have about food preparation:
- Use a recipe book or a recipe website for a variety of meal ideas.
- Create a meal plan before shopping – make a grocery list based on your meal plan.
- Try to shop at the same store – one that is familiar and comfortable for you.
- Be consistent and shop on the same day and at the same time.
- Stay organized in the kitchen – use labels or photos on cupboards and drawers to enable the person you care for to assist you in the kitchen.
- Invite the person with dementia to help with specific meal preparation tasks (e.g., cutting up vegetables for a salad.) Limit other distractions while cooking.
- Be honest! If food preparation and cooking is getting to be too much – ask your support network for help.
Consider encouraging the person with dementia that you care for to join you in grocery shopping, menu planning and meal preparation. It can be an enriching experience for everyone!
Upcoming Family Education
Provincial Family Education
There will be no education sessions throughout July and August. Sessions will resume in the fall.
Click HERE to see a sneak peak of the 2013-14 calendar.
Upcoming Fall Education
Family Education – Community Session
Alzheimer’s Disease and Other Dementia’s: Identifying Warning Signs & Planning for the FutureWednesday, September 18 7 – 8:30 pm St. Joseph’s Residence – 1149 Leila Ave Click here for poster Click here for online registration
Living with Alzheimer’s Disease or Another Dementia WorkshopTwo-day workshop Saturday, September 28 & Saturday, October 5 9 am – 2 pm Lindenwood Manor – 475 Lindenwood Dr E Click here for poster Click here for online registration
Upcoming Telehealth Sessions:
The 7A’s: Exploring the Effects of Dementia on the BrainPresented by Joyce Klassen, Dementia Care Educator Alzheimer Society of Manitoba Tuesday, October 8 6:30 – 8 pm
An Individualized Approach to Managing BehavioursPresented by Dr. Lesley Koven, Ph.D., C.Psych Tuesday,October 15 6:30 – 8 pm
Care4U Family ConferenceSaturday, November 2 9 am – 4 pm Canadian Mennonite University – 500 Shaftesbury Blvd Click here for online registration
2013 Motorcycle Poker Derby
The Alzheimer Society of Manitoba’s 2013 Motorcycle Poker Derby takes place in Brandon, Manitoba on Saturday, August 17, 2013.
For more information please call Marni at 204-729-8320 or email email@example.com
Make your coffee count this September and October!
Coffee Break® is an Alzheimer Society nationwide annual fundraiser. During September and October, friends, co-workers and customers gather in communities across Manitoba and Canada to raise funds for local Alzheimer Societies.
Participants at these events make a donation in exchange for a cup of coffee. The money raised in Manitoba stays in Manitoba to help support local programs, services and the search for a cure.
Host a Coffee Break® fundraiser at your office, home, local community club, church, school or anywhere you can serve coffee. It’s so simple! Just put on a pot of coffee and collect donations for a great cause.
Click HERE to register online.
Manitoba Liquor & Lotteries Trivia Challenge 2013
Challenge your brain at the 5th annual Manitoba Liquor & Lotteries Trivia Challenge!
Join the Alzheimer Society in October 2013 as teams of 10 compete in 10 fast-paced rounds of trivia for the title of grand champion! Registration is $30 per person with a maximum of 10 people per team.
Fundraisers like Trivia Challenge help support the Alzheimer Society of Manitoba’s programs and services and the continuous search for a cure.
To register, stay tuned for the website coming out early this month!