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“My mother has often said that she lost both her husband and herself. Her life became about her husband’s care. She couldn’t take part in her book club, walking group, or go out and spend time with her children or grand children. She was isolated by her role as a care partner, and she lost her identity.”

“My mother and father were married for 52 years but had known each other for 55 and had an amazing relationship and marriage,” says Corene.

“My mother’s grief was compounded by the fact that she was losing this person she loved so dearly. We were fortunate that he never lost his kindness, and his gentleness. Three days before he passed, he told my mother that he loved her. Those things weren’t taken from him, which I’m thankful for.”

Corene’s experience with Alzheimer’s disease was one marked by the sadness of losing her father, and also watching her mother face grief and exhaustion as a primary care partner.

“It seems like the health care system is pushing the idea of services to keep you living at home, as if it’s such a great thing. Well, it’s not necessarily a great thing.”

Corene’s mother first noticed some small differences in her husband, including a waning confidence and general uncertainty in both familiar and unfamiliar circumstances.

“In April of 2010, my mother asked him whether it was time to start doing the taxes, as he’d always done in previous years. He told her that wasn’t until May. It was a small difference, but to my mother, she knew there was something wrong. She got all the papers from upstairs and brought them down to him, and watched. All he was doing was shuffling the papers.”

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Corene’s mother started to strongly suspect dementia and that’s when the ball started rolling. At the time, they lived in Victoria, B.C. and their family doctor swiftly connected them with the specialists they needed in order to get tests. It wasn’t long before the doctor confirmed what Corene’s mother had suspected: It was Alzheimer’s disease.

Corene’s mother and father chose to move back to Southern Ontario, so that they could be closer to their children during this difficult time. Their goal was to give their children time with their father.

“That had a huge impact on both of them. Being in their 70s, relocating really did mean starting over. At that point, I worked on finding doctors, hospitals, and specialists in the area to make sure they had that support when they arrived. I managed to find a family doctor quite quickly, who was then able to get my parents the specialists they needed.”

“When my parents relocated to Southern Ontario, my mother and I started going to Alzheimer’s Society First Link education sessions to learn about Alzheimer’s. We went on Thursday nights and had a fabulous workshop presenter. She was really good. She was able to be factual but not scare the living daylights out of us which was so helpful, because we were all already scared. She was concrete and specific with information and that was exactly what we needed.”

As the child of someone living with Alzheimer’s disease, Corene experienced the push and pull of being in the workforce and being a support for her parents. She hoped to connect with others experiencing something similar.

“What I noticed in the education sessions that I went to was that I was one of only two people who were the children of parents with an Alzheimer’s diagnosis. Everyone else was a partner or caregiver. I didn’t find that I was able to find other people to really relate to, or who were experiencing the same things that I was. If there were support groups for children of people living with a diagnosis, I wasn’t able to find any.”
The progression of her father’s disease seemed to hover in the early stages for a long time, and then very suddenly, things happened rather quickly. “It seemed like every day there was a new loss to mourn.”
It was when her father’s condition started to decline more steadily that an unexpected problem started to surface.

“My mother started to face real exhaustion. Part of the problem is that, if you need any support, everything needs to go through CCAC. The responsibility of follow-up is squarely on the shoulders of the care partner. You can imagine how frustrating that is when you’re already trying your best to cope with the changes you’re experiencing at home, and caring for someone living with Alzheimer’s disease who may be facing a rapid decline.”

“Trying to get adequate support between various agencies was a full-time job.”

The wait time for support in a day program ranged from four to six months, and her father did get in after four months. The wait list for Recharge was eight months. The most shocking experience was when Corene’s mother reached out for long term care. What Corene’s mother faced turned into a nightmare.
“She was experiencing a crisis. On an average night, my father would wake up anywhere from six to 20 times. She wasn’t sleeping, and was absolutely exhausted. She reached out to the CCAC to secure long-term care, and was told at that point that there was 2.5 to 8 year wait list. A year into the wait, my mother called to check in on long-term care and the wait was actually even longer.”

“At that point, my mother’s only option was to go on a crisis list, which the CCAC supported due to her constant exhaustion. You have to be in crisis before getting into long-term care it seems.”
Across Canada, the annual cost of care for those living with dementia is a staggering $10.4 billion. The monetary cost isn’t the only impact, particularly to care partners.
“My mother has often said that she lost both her husband and herself. Her life became about her husband’s care. She couldn’t take part in her book club, walking group, or go out and spend time with her children or grand children. She was isolated by her role as a care partner, and she lost her identity.”

Based on her family’s experience, Corene is leery about what the future impact of Alzheimer’s disease and other dementias will be in Canada.

“I’m really worried about the baby boomer generation. We have a huge aging population coming up. We need more facilities, and more day programs. In an ideal world, there wouldn’t be the type of wait list that we experienced. As soon as you’re told that you have to wait a year for a break in a facility of choice, for respite, it puts the caregiver in a state of despair.”
Reflecting on her experiences, and through conversations with her mother, Corene and her mother see some silver linings.
“Through all of the turbulence, there were some really good supports along the way, including the Alzheimer’s Society. They made it clear that they were there to help and assist, and they were. My mother also joined caregiver support groups through Acclaimed Health, and the day program was amazing, both of which were lifesavers. The CCAC arranged for some home care, which was most needed, including help to shower. It was a godsend. Most importantly, the support of family was so valuable.”
Corene’s mother reiterates that without family, the day program and the support groups she does not think should could have managed. The push to keep a loved one at home is only good if there are services that are readily available. The programs and supports exist, however there are not enough – whether the person is at home or in need of full-time care, the wait for each is excruciating.