Thank you, Mr. Chair.
Good morning, everyone. My name is Tanya Levesque. I'm a young caregiver for my mother, Suzanne Levesque, who is now 65. I recently turned 41.
First, I want to thank you for the invitation to speak. It's truly a gift from God and a privilege for me, so thank you for the opportunity.
Mom was diagnosed with moderate-stage vascular dementia with significant brain atrophy in 2013 and mixed dementia in 2015-16. Dementia is a family affair. Her mother, my grandmother, is 86, and lives with Alzheimer's. Also, my grandmother's sister, who is 88, lives with Alzheimer's.
My mom's behaviour changed over several years. In my mid-thirties I really didn't know enough about dementia to start getting her tested. I thought that it was menopause or that she was just very tired from travelling. I now see the red flags when I reflect back. Educating people and promoting earlier diagnosis and intervention would possibly have helped her in her mid- to late-fifties.
There are two parts to my story. Part one is the difficulties I experienced while I cared for my mother at home for two and a half years, and part two is the difficulties I encountered during the long-term care process and beyond.
Part one begins in 2013. At the age of 37 I decided to take a leave of absence without pay to care for my mom at home. Where I work, my collective agreement says I have five years maximum to care for an immediate family member. I tried to make our limited financial resources work. My father died at a young age, leaving my mom with a little pension, and my mom didn't have a pension.
Here are some of the financial barriers I encountered. I was unable to access EI benefits, especially the EI compassionate care benefits. The criteria need to change for caregivers. I was unable to qualify for social assistance, and I certainly don't have job security. When I decide to go back to work in the next couple of years, they're going to place me on a priority list, and hopefully somebody will pick me off that priority list. Retirement is questionable at this time. There is a lack of subsidies for household expenses, which keep increasing, especially to fix a house that hasn't been repaired in 60 years. With increased food costs, I actually had to change my eating habits so I could save money, and I had to make sure my mom could eat properly as well.
Other difficulties I encountered were that there is no one-stop shop for information. The Alzheimer Society helped me quite a bit with the First Link program, but I had to do a lot of enquiries and research on my own. The program I had my mom involved with couldn't provide the activities they had actually wanted to, like pet therapy, because of the costs associated. They need more funding. In terms of home care services, my mom received 15 hours maximum for her daily care and activity. The staff really weren't trained to do a lot of things with her. They did watch television and go for walks. Some were good and some weren't, so I stayed home most of the time to make sure things went smoothly and she was still participating in life.
Part two is the difficulties I encounter in the process of long-term care and beyond. Here are some of the difficulties. I had to work on a plan B for my mother, because I was hospitalized in June 2015. With more home care services, I actually would have kept her at home so that I could care for her after the hospitalization and surgeries that I ended up having. My mother actually moved seven times in the time frame from December 21, 2015, to mid-June 2016 of this year. In less than seven months, she moved from a private care facility to a long-term care home. In the long-term care home, she moved three times to three different rooms, and then they sent her to the Royal Ottawa mental health facility. There she moved three times into three different rooms.
This was very hard for her. She was sent to the Royal Ottawa mental health facility because she had significant behaviours with the dementia, and I'm still convinced it's because of the medication they were giving her and all this moving about. This caused her a lot of distress. Her displacement is still not done to this day. Once she stabilizes at the Royal Ottawa, she's going to be moving into long-term care.
People with great difficulties with dementia end up being bounced around from long-term care, or from home, to a hospital, such as the Royal Ottawa. After they're stabilized, they're sent back to long-term care, and if the long-term care home can't reintegrate them back into the facility, they're bounced back either to the hospital or the Royal Ottawa. I've met some of these families.
More training and research funding needs to include dealing with special behaviours, like high anxiety and aggression, or at least have some homes that are specifically designated for people with special behaviours so that they have the necessary specialists, because homes are not prepared. We need to adapt to the sick person, and not have the sick person adapt to us and our policies.
I, like many other people, had to hire a private caregiver in long-term care to spend time with my mom, which was about two hours a day. I had to negotiate the salary, because I couldn't afford it. Staffing ratios need to increase and administration work needs to decrease, because they need to be spending time with our family members.
There is a brain imaging centre here at the Royal mental health facility, which is excellent, by the way. I wanted my mom to be tested or looked at, because I wanted them to do a comparative analysis of her brain now with the other scans she had over the years, but it's used only for patients who are in research projects, and there is no dementia care research funding. Our mental health facilities need funding for dementia care.
There was a Royal Ottawa special behaviours unit program that was run out of one of the Ottawa long-term care facilities, but it was placed on hold this year. They have to move the program to another home. This could take up to a year. Meanwhile, people are still suffering from special behaviours that they have.
The Phoenix pay system was rolled out this year, and I actually started receiving my bilingual bonus. This is adding to the interest that I am earning on little savings and an inheritance that I'm pulling from. Household income is considered when applying for subsidies, so there is a possibility that I may not qualify for a subsidy. Income tax is going to have to include these payments, and this may change the balance: either I owe you guys, or I am refunded from the government.
I could continue, but I will conclude. In my research, I found that Canada is very far behind other countries when it comes to dementia research, national strategies, and care. Collaboration with all the stakeholders is needed to create a good health care policy. The federal government can take the lead with this bill. Stay-at-home moms, executive assistants, professors, theatre directors, scientists, and priests are only some of the people with dementia I have encountered on my journey, along with their family members. They need your help, as do we caregivers. Passing Bill C-233 would be a significant stepping stone for everyone involved in this long and difficult journey.
Thank you.