If you or a loved one has been diagnosed with a life limiting illness in Lanark County, you might want to first have a look at the Lessons learned from my journey for things I recommend be done as soon as possible to ease your journey. After you have checked out those tips, you can come back here for additional supports along the way.
The resources below are presented in the order of when they may be needed: while caregiving, before dying, while dying, nearing death, at death and post death. Please scroll down to familiarise yourself with all that is available to support you along the way.
The pandemic has raised awareness of hospice palliative care and the great need and benefit of Advance Care Planning. All of our Caregiver pages are currently being revised and updated (January 2021). Please contact me if you would like to chat about your particular caregiving situation.
Before and while dying
Practical Caregiver Training. This hands-on, practical training for Caregivers of elderly loved ones or those with a life-limiting illness covers all aspects of care including emotional, social and physical. Led by myself with excellent palliative care nurses and a physiotherapist. I took this training myself originally and highly recommend it. Facilitated by myself, a highly skilled palliative care nurse and excellent physiotherapist from our community.
Canadian Virtual Hospice: This is is an incredible virtual resource for everyone faced with death and dying; both for themselves and a loved one. Aside from the “Ask a Professional” option where some of Canada’s leading Hospice Palliative Care people answer your questions privately, there is a slew of resources for caregivers. They have caregiving videos that provide step-by-step instructions on common caregiving tasks. Examples of other resources on their website:
- Advice to caregivers entering the world of advanced illness (3:50)
- Caregiving changes marriage roles (3:45)
- Caring for myself and being honest about my feelings (3:28)
- How to help a family going through end of life (2:39)
- Helpful conversations with healthcare providers (1:32)
- Caregiving benefits through the Government of Canada
Lotsa Helping Hands – this is a free online tool that I used when looking after my sister. A place to “Easily Organize Help for Someone in Need. A central place to coordinate meals and help for friends and family. A Care Calendar to Schedule and sign up for tasks such as meal delivery and rides to appointments”.
The Ontario Caregiver Organisation is another great support resource for Caregivers. They offer both online group coaching and one-on-one, individualized telephone counselling as well as a series of helpful webinars. Their SCALE Program (Supporting Caregiver Awareness, Learning and Empowerment) aims to empower you with practical information and skills to enhance self-awareness with a focus on your own needs and well-being. This is where you can Register for Group Coaching and/or Private Counselling. Below are their upcoming webinars:
- How Caregivers can Manage Anxiety & Anger (February 23rd, 2021; 12-1pm)
- Becoming a Mindful Caregiver (March 2nd, 2021; 12-1pm)
- The Self-Compassionate Caregiver (March 9th, 2021; 12-1pm)
- Find Your Caregiving Strengths (March 16th, 2021; 12-1pm)
- Time for Self-Care While Caregiving (March 23rd, 2021; 12-1pm)
Hospice Palliative Care Ontario: Caregiver Support and Education Module
Ottawa Regional Cancer Foundation – Cancer Coaches, Financial Assistance, Counseling
Caregiver Contingency Plan Covid19-2020pdf Do you have a plan? “Pandemic or not, having a back up plan in case you become ill and can’t provide care is something all caregivers need. Your back up plan will help to ensure the person you care for continues to receive support.This checklist was created by caregivers, for caregivers and covers a list of things you should include in your plan”.
Hospice Palliative Care Ontario’s Caregiver Support – provides informal caregivers with support, resources, and information they need to be the best caregiver they can be; from learning how to deal with our own emotions, to learning how to make tough decisions, and being able to meet the appropriate physical, spiritual and cultural needs of the person you are taking care of.
If you have the financial resources and want help from a nurse professional to navigate for your needs, there is Nurse on Board. I don’t have experience with them but was impressed by the approach and understanding of the nurse who started it in Ottawa.
The dying process
Goals of Care and Advance Care Planning during the COVID-19 Pandemic
Do Not Resuscitate – CPR / DNR Discussion Aid For Families Booklet and Video.
A guide to understanding death and dying for family and caregivers Produced by Kingston General Hospital, November 2016 (good although it needs to be updated)
Final gifts: understanding the special awareness, needs, and communications of the dying. by Maggie Callanan. You can read an interview with Maggie here: Maggie Callanan’s website interview.
If you want tsupport through any of this, email me.
Last days
When Death is Near – by Mike Harlos MD, CCFP(PC), FCFP – “In the final phase of progressive life-limiting illness, patients and families face changes, challenges and choices that are unfamiliar and can seem overwhelming. This article offers information about what might be expected as death nears”.
Dying at Grace – 2003 documentary “is quite simply unprecedented: five terminally ill cancer patients allowed the director access to their final months and days inside the Toronto Grace Health Centre”. Available at libraries and through Kanopy. Or in parts on YouTube.
Natural / Green Burial / Death Positive Movement
Earth Bound Coffins – handcrafted, eco-friendly coffins from Lanark County timber made by carpenter Donna Mae Klassen.
http://www.greenburialcanada.ca/find-a-provider
cbc.ca /death-burial-green-recycling
US Based and excellent http://www.orderofthegooddeath.com/
Grief
MyGrief.ca Because losing someone is hard…MyGrief.ca helps you to understand and work through your grief.
Life-Cycle Celebrant™ – Patti Koeslag runs grief and bereavement groups for Community Home Support Lanark County and facilitates Conscious Aging workshops. Thresholds of Life Ottawa. Patti has a Facebook page where she shares links from grief/bereavement sites, events, called Together We Remember. Patti is a Recipient of a 50 over 50 Award in 2018. 613-809-7115 (c)
A Grief Observed by CS Lewis.
Please See Me Through My Tears by Kelly Osmont – Psychotherapist, Certified Death Educator and mother of Aaron Craig Osmont who died in 1982 at age 19.
How to Help a Grieving Friend: 11 Things to Do When You’re Not Sure What to Do, – Huffington Post
The Red Hand Files by Nick Cave – reflections on grief and more by musician Nick Cave whose young son was killed in an accident. He has a way with words.
Lingo:
Coffin – mummy style – in Europe
Casket – satin pillows, etc. – here.
Container – Plywood or pine, au naturel, consumer
Shroud – is a shroud, not even a containe
Please email me if you have questions, comments or are looking for support.
The Art of Dying Gracefully 