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Connecting the Dots for Caregivers NEWSLETTER ISSUE 5 | MAY 2018

IN THIS EDITION OF CONNECTING THE DOTS FOR CAREGIVERS: • Project Update •M  eet a Local Caregiver •O  ntario’s New Caregiver Association •C  elebrating Family Caregiver Day

Project Update The goal of Connecting the Dots for Caregivers is to improve the caregiver experience by focusing our work on three key themes: Awareness and Recognition

Communication and Information

Communication and Education, Training and Supports

As a first step, we recently piloted our Time to Talk toolkit with STAR Family Health Team. The toolkit addresses our first theme of Awareness and Recognition and includes resources to support both caregivers and healthcare providers in their conversations. With the pilot complete, we are beginning to share the toolkit with other project partners. We recently held orientation sessions with our second co-design team members. This team will focus on the theme of Communication and Information, at the pilot site of Seaforth Community Hospital. The team includes caregivers and providers from hospitals, home and community care, as well as family health teams. It’s important to include representatives from the various healthcare sectors in order to understand the unique needs of both healthcare providers and caregivers at various stages of the healthcare journey. We look forward to providing an update on this work in our next newsletter!

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NEWSLETTER ISSUE 5. MAY 2018


Meet Darlene Connecting the Dots for Caregivers first met Darlene at a community forum in the summer of 2017. Her story was one of the many that put a spotlight on the challenges of being a caregiver. Darlene made it clear she wanted to be part of this work, in hopes that she can help other caregivers. As a member of two co-design teams, the operations committee and a regular public speaker, Darlene shares her story with healthcare providers locally and provincially and is playing an integral role in the Connecting the Dots for Caregivers project. This is Darlene’s story. My name is Darlene. I am a caregiver for my husband Jim, who at age 58 was diagnosed with Frontal Temporal Dementia which is early onset Dementia. We were at a point in our lives where our two daughters were grown and living on their own and we were looking forward to more time for biking, hiking and travelling, all the things we loved to do. My husband was the sole owneroperator of a small construction and renovation company. He had always worked 24/7 but in the last few years he was starting to make time for us a priority. Looking back, I realized that even a year and a half before diagnosis I knew things weren’t right, but I chalked it up to stress. Earlier that year, I lost my best friend to cancer and then a few months later I lost my mom. Life was starting to fall apart for us and it was only the beginning of what was coming next. One of the biggest challenges was getting people to take my concerns seriously. Jim had good days and to many people, he appeared to be just fine. I persevered because I knew things weren’t fine. It took time and it was stressful, but I’m thankful my healthcare team finally listened to me.

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I was even more thankful when they acknowledged and validated my concerns. When the diagnosis finally came I was in shock, not wanting to believe it was true. Jim could no longer work or drive and he couldn’t be left alone. I felt like Jim had no life. At the time, I didn’t think about myself, as I felt like my feelings really didn’t matter now. I was now a caregiver. You just do what you have to do and make the best of it. I read everything I could find on early onset Dementia, as I was determined to make good decisions for Jim. I think going through this experience has made me a better person. It was a very humbling process and it certainly gives you great empathy towards others. Of course, we lost some family and friends and our connection to the community. I couldn’t make any plans as I never knew what the day was going to bring and if Jim wanted to do anything. He had no interest in things we had always done together. I realized later that I was trying to make him fit into a world that he didn’t want to be in. In Jim’s mind, he was in a place of his own and the world I wanted to still be a part of was something he didn’t want anything to do with. For me, that was some of the most stressful times.

NEWSLETTER ISSUE 5. MAY 2018


I couldn’t go anywhere and Jim was getting worse. I was trying to function on very little sleep, as I was sleeping with one eye open, always on duty. Eventually, as Jim’s disease progressed, I felt I could no longer care for him and he moved into a long-term care home. This was very hard to accept, but I knew it was time. I was losing my husband and my partner of almost 40 years. When asked about what caregivers need to do, Darlene had this to say: I think caregivers really need to reach out and talk to someone. Asking for help is hard but in hindsight it is very necessary. They need to trust their instincts Talk and persevere if they think Time to something is wrong. I knew my husband best and I was fortunate that my healthcare team acknowledged that and embraced me as part of the care team.

Time to

Talk

Ontario’s New Provincial Caregiver Association! On April 3, Family Caregiver Day, the provincial government announced its intention to provide $6.5 million in funding for the creation of a caregiver organization in our province. The Ontario Caregiver Organization is being described as a resource for caregivers that will make it easier for them to access a range of services and information and dedicated to supporting the many Ontarians who provide unpaid care to their family, friends and neighbours. This is welcome news to all of us at Connecting the Dots for Caregivers. We’ve heard from caregivers in Huron Perth and we know more support is needed. We look forward to watching this new organization evolve to meet this tremendous need. You can learn more about the organization and follow its progress at www.ontariocaregiver.ca.

Time to Talk Caregiver Connection and Information Event

On April 3, Connecting the Dots for Caregivers held its first Time to Talk Connection and Information Event where local agencies came together to provide the community with information about the resources available to caregivers in Huron Perth. The free event also included a Caregiver Café, providing an opportunity for caregivers to connect and share their experiences in a relaxed environment. The Stratford Beacon Herald also joined and printed a story which can be found here. Thank you to our team of family caregivers who helped organize the event and make it such a success. We look forward to doing this event again!

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NEWSLETTER ISSUE 5. MAY 2018


About Connecting the Dots for Caregivers Connecting the Dots for Caregivers is a partnership between The Change Foundation and six health care organizations in Huron Perth. Together, with family caregivers, we
are looking at ways to improve the caregiver experience by co-designing solutions, programs and resources that will ensure family caregivers feel valued, respected, engaged and supported in their important role. The three-year initiative includes four phases:

a a a

Phase 1 - Planning and Engaging Family Caregivers – Fall 2016 to Summer 2017)

Phase 2 – Defining Areas of Focus and Co-Designing Solutions with Family Caregivers and Healthcare Providers - 2017 to 2018

Phase 3 – Pilot Services and/or Improvements with Partner Organizations – 2017 to 2018

Phase 4 – Further rollout of services and improvements - 2019

PROJECT PARTNERS Family Caregivers in Huron Perth Huron Perth Healthcare Alliance Alzheimer Society of Perth County
 North Perth Family Health Team
 One Care Home and Community Support Services South West Local Health Integration Network STAR Family Health Team

For More Information To learn more about Connecting the Dots for Caregivers visit www.hpha.ca Follow the project on twitter @CC_Connecting

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NEWSLETTER ISSUE 5. MAY 2018

Connecting the Dots for Caregivers Newsletter issue 5  

Connecting the Dots for Caregivers is a project that aims to improve the caregiver experience in Huron Perth. The newsletter will provide up...

Connecting the Dots for Caregivers Newsletter issue 5  

Connecting the Dots for Caregivers is a project that aims to improve the caregiver experience in Huron Perth. The newsletter will provide up...