The Improving CARE Together project, funded by the Change Foundation through their Changing CARE initiative, will improve the family caregiver experience and engagement at St. Joseph’s. The project will address Changing CARE’s four key needs identified by caregivers and health care providers: communication, assessment, recognition and education.
Partnering with caregivers to improve their experience starts with listening to their stories
The story of how Don Mahood met his wife Mary Charlotte could have come straight from an old Hollywood movie. It was 1966 and Don, single and in his mid-twenties, was a newsman working at the London Free Press. His mother was being treated for cancer at St. Joseph’s Hospital. Don visited his mother two to three times a day and would often chat with the nurses on her floor. One of those nurses happened to be Mary Charlotte. Don’s mother lost her battle with cancer, but because of her journey, he met his true love. He and Mary Charlotte were married a short time later. They lived in towns across Ontario before settling in London where they raised three daughters.
While the years were happy, Don started to notice changes in Mary Charlotte. “I knew there was something wrong. She started to have some difficulties at work, and…when I look back, they were all memory related,” Don says. Mary Charlotte continued to have issues with her memory after retirement but she was able to hide it from the outside world. “Only the person that lives with the person knows (what’s happening). To others she seemed fine. I would go to my physician and say, my wife has some dementia. They would do an assessment and 10 minutes later she would come out of the room and they would say, ‘She is fine.’ Unless you are living with it… you could sit and talk to her and be convinced she was okay. For the longest time, nobody would listen. It was very frustrating.”
After advocating with their family doctor, Don got a referral for Mary Charlotte to St. Joseph’s Health Care London’s Specialized Geriatric Services. In 2012, Mary Charlotte was formally assessed by St. Joseph’s geriatrician Dr. Michael Borrie and was diagnosed with Alzheimer’s Disease. Dr. Borrie recognized the importance of not only caring for Mary Charlotte, but providing support for Don as her family caregiver.
With the guidance of Dr. Borrie, Don was connected with resources at a community agency where he participated in an eight-week education session on dementia and caregiving. He’s also joined a support group for family caregivers that meets every two weeks. “Knowing about these resources has given me the help I needed to be a better caregiver,” says Don. “In the support group, we discuss our problems and can learn from each other’s experiences.”
Since her diagnosis, Mary Charlotte’s condition has worsened and she now requires care twenty-four hours a day. Don has to help her do even simple tasks, like brushing her teeth and getting dressed. “It’s the hardest thing I have ever done in my life. But I feel really good about the fact that I have been able to take care of my wife.” With tears in his eyes, Don adds, “Every morning when we are having our breakfast, she will look over at me and say, ‘You know I just loved you so much.’”
His advice for other family caregivers, “You as the caregiver…you have to take the initiative to source out help and take a positive approach. Make a point to learn about the disease or condition, because then you learn (when things happen) it’s not your loved one, it’s the illness.” Watch Don's story below.
Bev's caregiver story
Bev became a caregiver for her dad Grant after her mom was diagnosed with a terminal illness. Here is their story:
Joan's story as a caregiver
Joan became a caregiver for her husband Stewart after a fall caused his brain to bleed and shift. While Joan is happy with the compassionate care Stewart has received at St. Joseph's, she feels improvements can be made in how family caregivers are involved in care. Joan has shared her experience through St. Joseph's Improving CARE Together project.
How can you participate?
To understand how we can be a better partner, we need your help. We are inviting you to share your experience as a family caregiver at St. Joseph’s Health Care London. We want to listen and learn from you and other family caregivers, so together, we can build stronger partnerships.
We are looking for participants for interviews (in person or by telephone), for focus groups (an in person meeting with other family caregivers) and to participate in caregiver events who:
- have received care or had a family member receive care at St. Joseph’s within the last two years,
- want to share their health care experience at St. Joseph’s in a way that others can learn from, and
- will discuss what went well and areas where St. Joseph’s can improve.
If you fit the criteria listed above and would like to share your valuable input, you can email changingCARE@sjhc.london.on.ca.
Follow us on twitter @cc_improving.