Tanis finds courage in herself and others

Tanis finds courage in herself and others

Tanis and her father first noticed changes in her mother's memory in the summer of 2012. For several years, they lived with a growing awareness that something wasn't right, though her mother managed to mask it well from others.

"We were all in denial for a long time," Tanis recalls. "My mom didn't want to go to a doctor to discuss her memory loss. But by the time the diagnosis came years later, I was prepared. My dad wasn't as ready."

They were fortunate that her mother's family doctor promptly administered a test and referred them to a neurologist with vast knowledge of dementia. Tanis now recognizes this quick connection to specialized care isn't universal for families facing similar diagnoses.

"Getting to the right people is a challenge for many," she says.

The unpredictable journey

What surprised Tanis most about becoming a caregiver was the disease's unpredictable nature. Just when she and her father adjusted to one challenge, another would emerge.

"The challenges my mom was having 4-5 years ago in terms of mood, her personality, were far different than they are now. We regained her personality somewhat in a way. It can be an unpredictable disease," she explains. "You're always playing catch up."

Finding Club 36

It was Alberta Health Services that first told them about Club 36, an Adult Day Program run by Alzheimer Calgary.

"It was a blessing for mom to be accepted and it was wonderful for her," Tanis says. "The program treats people as individuals; team members focus on the abilities of members instead of on the downside of the disease process."

The program paired her mother with university students, creating a connection that transcended the disease.

"Members and students created art projects during different semesters. It was wonderful for someone to see Mom as a person. The empathy the students and the Club staff have is evident. One student told Tanis, 'I don't have grandparents here, and I am so grateful to spend time with your mom.' "

Through Club 36, Tanis also found community with other caregivers and family members. "We got to meet the other family members, and it was wonderful to get to know them. It becomes an extended family."

The power of connection

For Tanis's mother, Club 36 became a constant she could rely on in an increasingly confusing world. "She was reluctant to participate in things before that, but she always wanted to go to Club, even when it was freezing outside. She truly felt connections with other members and the staff."

Tanis credits the professionalism, knowledge, and consistency of the staff as essential to success. "People with dementia need a routine and predictability. The staff has expertise and they're putting it into practice at Club 36."

Through Club 36, some of the members' artwork was displayed at the Central Library in Calgary. "It was so beautiful. My family and I visited, and I watched people stop and read about the art and the people. It was wonderful to show the public that those with dementia can do beautiful things; they are thinking, feeling people."

Learning to grieve and grow

As her caregiving responsibilities intensified, Tanis found herself struggling with burnout. Through Alzheimer Calgary's education sessions and caregiver support groups, she discovered something unexpected.

"Before I attended, I didn't realize I was grieving. And I was quite burned out," Tanis admits. "I learned that it's normal to grieve that your person is changing. And that you can move on from that grief and re-frame what you can still do with them; how to continually adapt to the current situation."

The caregiver support group she joined provided another lifeline. "What struck me was that we were all at different stages of the journey, so we came to it from different perspectives, but I could relate to everyone's story. It’s been incredibly valuable to hear others' experiences, like how they handled a certain situation, and learn coping mechanisms and tools from others . We learn from each other that there's no perfect answer and that we all make mistakes. It makes me feel like I'm not alone."

Courage in small moments

Tanis's mother lived in a care home where she enjoyed music programs and other activities and received wonderful care. “Club 36 helped to prepare my mom for that transition.”

Tanis came to appreciate the small moments of connection - like trips to the grocery store, which gave her mother normalcy.

She recalls a particularly touching moment at Starbucks: "We went to Starbucks recently and the woman was so lovely. She recognized that mom would benefit from a straw and gave her one. It was really interesting that she picked up on it."

Not all public interactions are so positive, though. "It can be very difficult to do these normal things, and as a society, we have to acknowledge the disease and not run from it."

Looking forward

When asked what she would tell someone just beginning their caregiving journey, Tanis offers, "Keep doing things. Try to keep doing what you normally would when your person has the ability to do so. Take advantage of the times you can do that. It can be difficult to be in social situations, even with family.”

Reflecting on what would happen if organizations like Alzheimer Calgary weren't available, Tanis grows solemn. "A lot of people would fall through the cracks. Both people with the disease and caregivers would really suffer because we both need support to move forward in a meaningful way. Alzheimer Calgary is instrumental in changing society's perspective of this disease."

Tanis shares what she saw in her mother every day

"The thing that I saw in my mom was her courage. She kept going. She had a quality of life, and she worked hard at it. Some things were so hard for her, but she really showed incredible courage."

She adds one final thought:

"My mom would really want to express to Club 36 and the practicum students how grateful she was. She would want to thank everyone involved. We are all so touched by the empathy shown by the other members and the Club 36 Team. They're making a big difference."

In the face of an unpredictable disease, it's courage - from those living with dementia and those caring for them - that lights the way forward.

Learn more about Club 36 Adult Day Program