In This Issue
IG Wealth Management Walk for Alzheimer’s
Brad McIntosh Talks About How he Lives with Dementia
Over the Rainbow: Building Understanding
Celebrate Mother’s Day!
Rob Kennedy Makes a Gift in his Will
Walking for the Good Times: Two Families’ Stories
CEO’s Message: Your Unique Story Deserves to be Told
Care4u: Save the Date for Our Family Conference
Be Our Super Hero!
Education and Programs
Events and Volunteering
Join us for the 2019 IG Wealth Management Walk for Alzheimer’s! Those who participate will “Make Memories Matter” for family and friends of people with dementia.
Walks take place across the province during May and June, with the Winnipeg Walk set for Thursday, June 13 at the Assiniboine Park Lyric Theatre. Click here to register now or to find a Walk in your area!
Click here to read about two families who share their reasons for signing up for the 2019 Walk. A team named “Stacy’s Mom Has Got It Going On” will join a Walk in Steinbach to honour their mother. In Winnipeg, the Romans family will remember Grandpa Lyle’s large heart.
YES. I LIVE WITH DEMENTIA.
Let me help you understand.
Managing the Ups and Downs:
Getting Help on the Difficult Journey
It’s not uncommon for Brad McIntosh to field several calls a day from his mother, who has Alzheimer’s disease. It’s also not uncommon for him to duck out from work to go to the care home where she lives and help calm her if she’s become upset.
Recently, in a confused state over the death of a good friend, Marjorie called her son 58 times in three days. On occasion, she has become verbally abusive or accused others of stealing from her.
She’s called and left messages and cried because she is so upset.
“She’s my mom, so I’ll do anything to help her,” says her oldest son. “You’ve just got to have patience and do your best.”
He carries two phones – a business phone and a personal one. “I haven’t given Mom my work number!” he chuckles, adding he has a supportive boss who’s aware that he is a caregiver for a person with dementia and understands when he has to leave to deal with an emergency.
Marjorie, now 92, raised five kids, was active in her church and worked as a school secretary. She loves music and sang in her church choir. She loves her family and friends. Everyone loves her.
In 2015, however, she began showing signs of forgetfulness and became confused easily. At her granddaughter’s wedding in Mexico, she became disorientated and wandered off. Later, back home, she had a car accident and couldn’t remember what happened.
It raised red flags, and Brad started looking for information about what might be happening to his mom. He contacted the Alzheimer Society of Manitoba and found the help he needed.
“I’d be lost if I hadn’t reached out to the Society. They taught me about the brain and that it’s not her fault; these are changes your family member can go through. It’s been really informative from the get-go and continues to be to this day,” he says.
Attending conferences and hearing experts and stories from other families is especially beneficial, he says. “I really wanted to be sure I understood what was going on with my mom, and going forward you just can’t wing it. There’s so much to learn and people change so much. I wanted to make sure I was well equipped to deal with this.”
Brad knows that it’s important to take care of himself as a caregiver, and he does this by talking with his wife and family, exercising, cooking and doing home renovation projects.
He continues to attend learning events organized by the Society, and he shows his appreciation by volunteering. He knows that the support he has received through the Society’s programs and services allows him to better manage the ups and downs of his mom’s progression with the disease.
Over the Rainbow:
Ellie Caslake’s work is important. She’s concerned about making sure older people from the LGBT2SQ+ community have their needs accommodated as they live the lives they wish to lead – just like everybody else.
As the Older Adult Program Coordinator, Over the Rainbow, at the Rainbow Resource Centre in Winnipeg, and as a trans woman herself, Ellie knows that this doesn’t always happen, especially when it comes to health care.
Take the example of two gay males in their eighties who have lived together as partners for 40 years. One has dementia and lives in a personal care home, and the other visits as often as he can.
“Couples in this situation often can’t be who they are. They can’t hold hands, cuddle or show affection for each other,” says Ellie. “We hear from gay couples who tell us they pretend to be old school friends or sport teammates. They do this so they won’t experience negative reactions from others at the facility – whether they be staff members, other residents or visitors.”
It’s not just gay males who can be affected, it’s anyone who self-identifies somewhere on the LGBT2SQ+ spectrum. (See link below for more information.)
Ellie herself is worried about what will happen to her if she ever finds herself in long term care. Now in her late sixties, she has identified as a female since she was a child, but she has a male body. “Because I look like I’m male, will I be put on a male unit?” she worries. “If my partner is not there, will someone help me dress the way I prefer – in women’s clothing and a wig? Who will help me with my makeup?”
What Ellie wants for herself and others in her community is equality in health care as they age. She and other activists are on a mission to accomplish this through education and awareness. The Alzheimer Society feels this is an important issue, so they invited Ellie to present to staff members.
The presentation was eye-opening. “Ellie helped us to understand the issues her community faces,” says Norma Kirkby, Program Director at the Society.
“When a person has dementia, they may recall things from long ago. They may remember a time when they were being bullied for being gay or lesbian,” says Norma. “If caregivers in long term care accept the person as the person wants to be, they’ll be better able to understand emotional reactions and provide quality care.”
For Ellie, it’s about being treated with respect and dignity – just like any other person expects to experience. ”
Mother’s Day is a time to thank our matriarchs for their contributions to family life. This year, let’s support our mothers by remembering that women are:
– more at risk than men of developing dementia
– more likely than men to take on a caregiver role
The Alzheimer Society encourages you to celebrate the strong and caring women in your life on Sunday, May 13. They deserve it!
Make a Gift in Your Will
Marg and Pete Kennedy’s four adult children became increasingly concerned as they witnessed first Marg, then Pete, begin to have problems with memory and become anxious about everyday things. They also worried when they noticed Pete becoming frustrated with his wife’s inability to remember things.
“Mom progressed slowly over many years, and we witnessed her struggle,” recalls her youngest son, Rob Kennedy. Eventually, she was diagnosed with Alzheimer’s disease. That’s when the family turned to the Alzheimer Society for help.
“My siblings and I all live in Winnipeg so we had numerous family meetings. We ultimately turned to the Society to help us better understand, as caregivers, how we should respond to the memory loss and how we could ‘go with the flow’ without being critical,” explains Rob.
Grateful for the Help
It was help they were all very grateful to receive. So grateful, in fact, that 13 years after his parents died within six weeks of one another, Rob is continuing to show his appreciation. He is in his fourth year on the Society’s Board of Directors and is currently the vice-chair. As well, he acts as captain for a team in the annual IG Wealth Management Walk for Alzheimer’s. He’s also a monthly donor.
Most recently, he named the Society as a beneficiary in his will. “My wife and I were renewing our wills and I wanted to make a legacy contribution, dedicated to my mother,” says Rob, who is the provincial film liaison manager with Manitoba Sport, Culture and Heritage. “We’re fortunate our daughter has a successful career, and it appears we’ll have some resources upon our passing that we want to use to the benefit of the greater community.”
It was information provided by the Society that helped the Kennedy family when they needed it most. The workshops they attended with their father were beneficial, and so was the information on the Society’s website. “Just poking around on the website is a tremendous resource – the information is essential because it’s a disease that affects the whole family unit.”
Rob maintains that deciding to make a gift to the Society in your will – indeed, any financial support given to the organization – is critical, especially at a time when health care in the province is under pressure. Non-profits such as the Alzheimer Society augment government support by delivering services to the community.
“The Society’s work benefits thousands and thousands of individuals across the province,” he says.
When you include a gift in your Will to a registered charity, you save taxes and leave more for the people you care about. Click here if you would like more information.
For the two families featured below, the IG Wealth Management Walk for Alzheimer’s is a perfect place to Make Memories Matter. Stacy Thiessen’s mom, Susan, will have a huge, supportive team to walk with her that day. Vanessa Romans and her mom, Sonja, will walk in memory of “Grandpa Lyle,” the family patriarch who is remembered for his big heart. Won’t you join them?
Stacy’s Mom Has Got It Going On
Who knew that when American rock band Fountains of Wayne released its hit song, “Stacy’s Mom,” in 2003, it would inspire participants in the IG Wealth Management Walk for Alzheimer’s in Steinbach in 2018.
The song was a perfect fit as the team name when Stacy Thiessen signed up for the 2018 Walk. After all, she had grown up using the song to tease her mom. “And we needed a catchy name,” she laughs.
At first, just Stacy and her mom, Susan Broesky, 56, were planning to walk. Susan had been diagnosed with a rare form of Alzheimer’s in September 2017; she has early onset atypical dysexecutive, a very fast-progressing form of the disease.
When extended family and friends heard the duo was planning to participate, they, too, decided to walk. Soon, a huge crowd had signed up, and more joined them the day of the event. Stacy figures at least 52 people came out in support of Susan and the Alzheimer Society of Manitoba – more than doubling the number of people in the Steinbach Walk. “It was wild!” she says.
What was touching and sort of funny, she adds, was that her mom thought the “parade” was in honour of her because it happened to be Susan’s birthday that day. “She couldn’t believe how many people came out for her birthday…so we just went with it!” Stacy and her sister Jenelle even had birthday cake waiting at the end.
Stacy had made two blue t-shirts: Stacy’s Mom Has Got It Going On was for Stacy and I’m Stacy’s Mom was for Susan. “I ordered them, and then our team exploded with people and I just kept ordering more and more,” she laughs. They even had Nana Has Got It Going On t-shirts for the five grandkids.
The team raised a whopping $4,400 for the Society.
These days, Susan is cared for by her husband Jeff, Stacy and Jenelle, and a host of girlfriends. She can be left alone for short periods. Stacy says it’s hard to believe what’s happening to her mom, but the family has found ways to come together to help her and each other.
Grandpa Lyle: Small in Stature, Large in Heart
Vanessa Romans and her family wanted to find a meaningful way to honour her grandfather, Lyle Romans, who passed away in 2015 after living with Alzheimer’s disease for seven years. So, last year they signed up for the Alzheimer Society’s annual Walk.
It was a fitting choice because “Grandpa Lyle” (as Vanessa called him) was known as “The Great Walker” to friends, neighbours and family. “He walked everywhere…I mean EVERYWHERE,” recalls Vanessa.
Vanessa and her mom, Sonja, picked up where Grandpa Lyle left off when they joined hundreds of other participants in the IG Wealth Management Walk for Alzheimer’s last spring. They’re planning to do it again this year with another mother-daughter outing on June 13, 2019 at Assiniboine Park Lyric Theatre.
Supporting the duo will be Vanessa’s father, Dean (Lyle’s son), her fiancé and her bridal party, who will be waiting at the finish line to cheer them through.
“Participating in the Walk is a wonderful and moving experience, as we get to meet new people who are all remembering the good times – just like we are,” says Vanessa, “It’s a privilege to have the opportunity to raise awareness and funds for dementia in such a large scale, exciting event!”
Vanessa describes her grandfather as “small in stature but large in heart.” He was the kind of man who was always helping others, and his quick-witted comments and jokes kept those around him constantly laughing.
The family started to get worried when he would forget where he was going on his walks, and he’d be defensive about his forgetfulness. Eventually, after a long-awaited diagnosis of Alzheimer’s disease, they realized the safest place for Lyle was long term care, where he would not get lost or be alone at his home. He spent his final years at Tuxedo Villa.
“Dementia and Alzheimer’s disease are difficult to watch,” says Vanessa. “Family members turn into new friends, deep and meaningful conversations turn into children’s play, and remembering the old times becomes a thing of the past. But deep down, I truly think that Grandpa Lyle remembered my mom and me when we went to visit.”
To Vanessa, her grandfather was her best friend and confidant. They spent endless hours together watching Inspector Clouseau movies and eating puffy cheezies. She knows that Grandpa Lyle will live on in her daily life. “At my wedding next summer, I’d like to think that when I look down at my bouquet of forget me not flowers, he’ll be there with me as I walk down the aisle.”
Click here to register now or to find a Walk in your area!
Your Unique Story Deserves to be Told
One of my granddaughter’s favourite things is to hear stories about when her mother (my daughter) was a little girl. She loves to know what made her mom laugh, or get frustrated, her favourite foods and games to play.
Our lives are made up of stories – snapshots of who we are in a given place and time. The re-telling of stories often helps other people understand more about their own situation.
People with dementia and their caregivers have a lot of important stories to tell. Dementia doesn’t stand still, and it changes each of us. There are good days and bad days and each story gives us experiences that are uniquely ours and valuable.
I have my own personal story with dementia. My father had Lewy Body dementia, and the last two years of his life were tremendously difficult. I have learned to live with the sad part of my experience with Dad’s illness by re-telling the many good times we had together. And we had lots of good times – both before and after his diagnosis.
Here at the Alzheimer Society, we want to hear your stories if you are willing to share them with us.
Sharing stories can help you to find a release for your emotions and perhaps help you to look at your situation with fresh eyes. Sharing stories can help others learn from what you’ve experienced and, maybe, not feel so alone. Sharing stories can also help others by allowing them to see how varied the journey with dementia can be.
And by sharing our stories, the community is reminded that dementia isn’t only about a disease or statistics – it’s about people, about families, about all of us.
Be Our Super Hero!
Events & Volunteering