Reflection, Reframing and Reimagining (repeat of Episode 4, Season 1)
Susan Bithrey and her husband Reg were looking forward to the perfect retirement until life interrupted. Susan describes how she reframed her experience and found ways to affirm her husband’s strengths, even as they diminished. In the process, she found new strengths within herself.
As a retirement gift, Susan was given a journal to record their many “golden year’s” adventures that they had planned together. Instead it sat empty until a year before Reg’s Alzheimer’s diagnosis when she started to keep an account of her concerns about his memory struggles. It became a five-volume tool for documenting the disease and for reflective learning for her and she generously shares her very poignant first entry with us.
Susan honestly reflects on having to learn on the job of becoming a caregiver; figuring out how and when to roll up her sleeves and jump in and when to have Reg speak for himself, make his own decisions and recognize his ability to do so. She also bravely shares some stories surrounding the heartbreaking personality changes that her husband went through and recommends grief counseling for caregivers in this situation.
Her humble and wise words to conclude this episode will resonate with anyone else encountering the same circumstances.
Resources that may be helpful to listeners of this episode include:
Shifting the Focus – a quick guide to behaviours associated with dementia and some tips on responses. https://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx
In Ontario, there is an extensive network related to behavioural supports that includes services, as well as information resources. They can be accessed at https://www.behaviouralsupportsontario.ca
The Research Institute on Aging at the University of Waterloo publishes a series –By Us, For Us which are information booklets created by people with lived experience. These can be found at https://the-ria.ca/resources/by-us-for-us-guides/
Susan Bithrey and her husband Reg were looking forward to the perfect retirement until life interrupted. Susan describes how she reframed her experience and found ways to affirm her husband’s strengths, even as they diminished. In the process, she found new strengths within herself.
As a retirement gift, Susan was given a journal to record their many “golden year’s” adventures that they had planned together. Instead it sat empty until a year before Reg’s Alzheimer’s diagnosis when she started to keep an account of her concerns about his memory struggles. It became a five-volume tool for documenting the disease and for reflective learning for her and she generously shares her very poignant first entry with us.
Susan honestly reflects on having to learn on the job of becoming a caregiver; figuring out how and when to roll up her sleeves and jump in and when to have Reg speak for himself, make his own decisions and recognize his ability to do so. She also bravely shares some stories surrounding the heartbreaking personality changes that her husband went through and recommends grief counseling for caregivers in this situation.
Her humble and wise words to conclude this episode will resonate with anyone else encountering the same circumstances.
Resources that may be helpful to listeners of this episode include:
Shifting the Focus – a quick guide to behaviours associated with dementia and some tips on responses. https://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx
In Ontario, there is an extensive network related to behavioural supports that includes services, as well as information resources. They can be accessed at https://www.behaviouralsupportsontario.ca
The Research Institute on Aging at the University of Waterloo publishes a series –By Us, For Us which are information booklets created by people with lived experience. These can be found at https://the-ria.ca/resources/by-us-for-us-guides/
Dementia Friendly Communities: Episode 19
This is the first in a multi-part series on Dementia Friendly Communities. In it, Phyllis Fehr, a member of our Editorial Board and also a member of the Dementia Friendly Communities project of the Hamilton Council on Aging hosts a discussion with Debbie Keay a fellow member of the Hamilton Ontario Project and Roger Marple who is active in a Dementia Friendly project in Calgary, Alberta.
These projects are different from each other but the motivations behind these 3 people, all of whom have dementia, share many similarities. Each person is actively living a life that they thought was lost to them when they were first diagnosed with dementia. Through their own research and reaching out to groups like the Alzheimer Society, each has learned how to adjust to having dementia and to live a full and meaningful life. They want to help other people living with dementia to avoid often self-limiting behavior and to reduce the stigma associated with having dementia. Dementia Friendly Communities is one way.
The Dementia Friendly Community movement is worldwide and is growing in Canada. Many Alzheimer Societies and other community organizations are involved. You can find out more about Roger and Phyllis by searching their names on the internet. Media articles about Phyllis and Debbie’s project include:
Roger's videos can be found at:
https://www.dementianetworkcalgary.ca
This webpage links to each of the partner province’s DFC sites, which contain some great resources:
https://alzheimer.ca/en/take-action/become-dementia-friendly/dementia-friendly-canada
This is the first in a multi-part series on Dementia Friendly Communities. In it, Phyllis Fehr, a member of our Editorial Board and also a member of the Dementia Friendly Communities project of the Hamilton Council on Aging hosts a discussion with Debbie Keay a fellow member of the Hamilton Ontario Project and Roger Marple who is active in a Dementia Friendly project in Calgary, Alberta.
These projects are different from each other but the motivations behind these 3 people, all of whom have dementia, share many similarities. Each person is actively living a life that they thought was lost to them when they were first diagnosed with dementia. Through their own research and reaching out to groups like the Alzheimer Society, each has learned how to adjust to having dementia and to live a full and meaningful life. They want to help other people living with dementia to avoid often self-limiting behavior and to reduce the stigma associated with having dementia. Dementia Friendly Communities is one way.
The Dementia Friendly Community movement is worldwide and is growing in Canada. Many Alzheimer Societies and other community organizations are involved. You can find out more about Roger and Phyllis by searching their names on the internet. Media articles about Phyllis and Debbie’s project include:
Roger's videos can be found at:
https://www.dementianetworkcalgary.ca
This webpage links to each of the partner province’s DFC sites, which contain some great resources:
https://alzheimer.ca/en/take-action/become-dementia-friendly/dementia-friendly-canada
- B.C.: https://alzheimer.ca/bc/en/take-action/dementia-friendly-communities
- Saskatchewan: https://dementiafriendlysaskatchewan.ca/
- Manitoba: https://alzheimer.mb.ca/we-can-help/programs-and-services/dfc/
- Dementia-Friendly Canada webinar, March 2020: https://vimeo.com/402941879
Grassroots Changemakers: Episode 20
Jim Berry and Bill Heibein are members of the North West Dementia Working Group (the Group) that was formed in 2014 by people with dementia and care partners to work to promote the change that they want to see happen to improve the lives of people living with dementia. The group is small, about 20, but mighty in its ambitions and accomplishments.
Jim and Bill share some of their motivations for belonging to the group and describe some of their accomplishments. Two of the ones of which they are most proud is a conference entitled Living Well with Dementia convened in Thunder Bay in 20xx and repeated in Dryden. As well, the group has started the Dementia Café in Thunder Bay that is entering its third year. Both projects have attracted volunteers beyond the core group of 20. The Café and the Zoom.
Jim and Bill also discuss an action research project that they are involved with, called Building Capacity. They have partnered with a seniors agency network in Vancouver along with researchers at Lakehead University and UBC. Bill and Jim describe their approach as “bottom-up” and the Vancouver group as more “top-down”. The idea is to see how the bottom-up group can influence community organizations to better serve people with dementia and how the top-down group can learn to involve people with dementia in program development.
Jim and Bill both feel groups like theirs not only offer opportunities for people to make a difference but also to benefit personally by becoming involved.
Dementia Cafe can be contacted at: dementia.cafe@lakeheadu.ca
The Dementia Cafe Facebook page is: https://www.facebook.com/Dementia-Cafe-A-Place-to-Belong-2611577718917565/
The NWDWG Facebook page is : https://www.facebook.com/North-West-Dementia-Working-Group-109779593941900/ and their Email is nwdementiaworkinggroup@gmail.com
For more information about the Building Capacity project https://crpd.ubc.ca/building-capacity-project/
Building Capacity Workshop Report - 2020 https://afa49033-9fa2-44a2-850f-d2a38a8ac3e2.filesusr.com/ugd/f7b74e_4fe6378f211c400fb2f36713f6576277.pdf
Jim Berry and Bill Heibein are members of the North West Dementia Working Group (the Group) that was formed in 2014 by people with dementia and care partners to work to promote the change that they want to see happen to improve the lives of people living with dementia. The group is small, about 20, but mighty in its ambitions and accomplishments.
Jim and Bill share some of their motivations for belonging to the group and describe some of their accomplishments. Two of the ones of which they are most proud is a conference entitled Living Well with Dementia convened in Thunder Bay in 20xx and repeated in Dryden. As well, the group has started the Dementia Café in Thunder Bay that is entering its third year. Both projects have attracted volunteers beyond the core group of 20. The Café and the Zoom.
Jim and Bill also discuss an action research project that they are involved with, called Building Capacity. They have partnered with a seniors agency network in Vancouver along with researchers at Lakehead University and UBC. Bill and Jim describe their approach as “bottom-up” and the Vancouver group as more “top-down”. The idea is to see how the bottom-up group can influence community organizations to better serve people with dementia and how the top-down group can learn to involve people with dementia in program development.
Jim and Bill both feel groups like theirs not only offer opportunities for people to make a difference but also to benefit personally by becoming involved.
Dementia Cafe can be contacted at: dementia.cafe@lakeheadu.ca
The Dementia Cafe Facebook page is: https://www.facebook.com/Dementia-Cafe-A-Place-to-Belong-2611577718917565/
The NWDWG Facebook page is : https://www.facebook.com/North-West-Dementia-Working-Group-109779593941900/ and their Email is nwdementiaworkinggroup@gmail.com
For more information about the Building Capacity project https://crpd.ubc.ca/building-capacity-project/
Building Capacity Workshop Report - 2020 https://afa49033-9fa2-44a2-850f-d2a38a8ac3e2.filesusr.com/ugd/f7b74e_4fe6378f211c400fb2f36713f6576277.pdf
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Season 3, Episode 21: Choices
The idea of life choices is woven throughout this episode’s conversation with Myrna Norman. Her life has not been easy, having been widowed in her mid-40’s with a growing family but she has got on with life in a remarkable way. Challenges confronted her when she was first diagnosed with Frontal Temporal Dementia (FTD) but she uncovered options and the choices they presented. Our ‘kitchen table” conversation was much like her book Dementia Strategies, Tips and Personal Stories – warm, refreshingly candid and encouraging of others. Myrna talked about her family and what lead up to and followed her writing Sometimes My Nana, a small story book for young children grandparent or other person with dementia. Our episode opens with Myrna reading from one of her recent poems I am not afraid. In the background of her ‘Zoom Room’ was a painting that she is currently working on. While writing and art are a big part of Myrna’s life, her main work is advocacy – seeking to improve life for people with dementia and to impart her philosophy of making positive steps to make the best of a dementia diagnosis. Myrna has nothing to prove but she has something to share. Dementia Strategies, Tips and Personal Stories can be purchased by contacting the.normans@shaw.ca. Sometimes My Nana can be downloaded for free at: http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/sometimes_my_nana.pdf I am not afraid can also be downloaded: http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/i_am_not_afraid.pdf Myrna’s Facebook page –Dementia Middle Stages can be found at https://www.facebook.com/groups/Midstagedementia For more information about Purple Angels go to: www.purpleangel-global.com |
