There is a great myth that all hospice care takes place in a building or institution. In fact, there are many volunteers who will give support for those caring for dying loved ones in their homes.
You wonder how much you can do for your loved ones at this stage of their life. I felt myself lacking in experience and ideas when both of my parents passed away.
My mother died at home, of cancer, my brother and father were there. They were inexperienced, my father was quite ill with delirium, after radiation treatments for a brain tumour, my brother unschooled in being a caregiver. None of them realized how close she was to death. None of them, including the neighbours who were helping, thought to call me back to town. It broke my heart.
I was with my father when he died in his LTC room. I could have used the help of a service of volunteers familiar with death and the dying process. The PSWs would check in on me, bring me tea, but I simply stayed in his room - afraid to leave. He passed away around 4:00 a.m., just after I finally went to sleep. After a lifetime of caring for me, it was my turn to give back to him. I wrestled with understanding the dying process, how to prop him up for comfort, giving him liquids when he was no longer eating, and mouth care when he began mouth breathing. It was a difficult process about which I wrote more in my memoir: Living and Dying With Dignity: A daughter's journey through long-term care.
For more information I took the course based on this standardized Ontario program and text: The Fundamentals of Hospice Palliative Care: A resource guide for formal caregivers.
Published by the Palliative Pain and Symptom Management, Consultation Program, Southwestern Ontario, Canada. The course covers all aspects of the dying process: biological, psychological, social, spiritual, emotional, and practical applications, as well as pain management, and legal implications according to the Health Care Act and Power of Attorney.
Hospice Association of Ontario - publications, for more resources. You can find many local and regional hospices by looking in the phone book, too. They are non-profit centres with many experts, friends and volunteers who will help you with accessing services. I presented my book to Sandra Winspear, the local Executive Director of our Hospice Muskoka, to be used as a resource.