An intimate window into a mother's experience of caring for her terminally ill son (the story of one of our client's published recently by The Globe and Mail)
First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.
The nurses didn’t believe me at first, that my son could predict his seizures. They were chewing me out in the middle of his hospital room because I had hit the call button when he appeared to be perfectly fine. That’s when Michael, only 11 at the time, yelled, “No! I’m not okay! I’m going to be sick!”
That was when they also first realized he could speak. He had a seizure two seconds later.
This whirlwind of physicians, neurologists, tests and hospitalizations had become the norm for Michael and me since he turned seven. It all started in the early hours of a Saturday in 2007 when his late father and I raced into his room to find his bed shaking and his face contorted to a look I had never seen before. At the hospital, he was sent for all sorts of tests. Eventually, they sent us home saying he’d just had a bad dream or eaten too close to bedtime. Then, it happened again a week later.
More tests and sleepless nights. More blame heaped on me, his mother, as his seizures increased up to three times a month. Once, when Michael was eight, a doctor with an idea on the tip of his tongue gave me a piece of paper that simply read “Batten.” But when I presented this to another doctor, the possibility was dismissed, the paper plucked from my hands and discarded.
The weeks of waiting for answers turned into years. It was only when Michael was 18 that we got an official diagnosis. And it was Batten disease, a terminal neurological illness so rare and obscure that doctors came to Michael’s hospital room to see it for the first time in their careers.
Click here for the full article.
Stories For Caregivers - HBH Client/Caregiver and Volunteer featured in new web series titled "How We Die".
We're honoured to have our clients Jennifer and Michael along with volunteer Liz featured in a new web series spreading awareness on the evolution of our understanding of death, dying, and end-of-life care. The series is called "How We Die" and is the latest production from Stories For Caregivers which is also the largest online community for caregivers in Canada. The episode is called "The Caring Confidante" and you can view it at the following link: https://youtu.be/J1nHHmRGnhI
You can watch the rest of the series and learn more about Stories For Caregivers here: https://www.storiesforcaregivers.com/project/33
Photo courtesy of Stories For Caregivers.
Volunteers are at the heart of hospice
In-Home Hospice Volunteers provide emotional, social, spiritual and practical (non-medical) support for people living with a life-limiting illness, along with their families and Caregivers.
The impact that Volunteers have on the lives of our Clients is invaluable. Their compassionate presence and attentiveness can provide a deep sense of comfort and safety, while activities such as life reflection and legacy work may offer a renewed sense of meaning and purpose.
By visiting our Clients in their homes it provides them with the opportunity to maintain a sense of autonomy and to continue to surround themselves with the social and cultural traditions that are most valuable to them.
The In-home Volunteer program also provides respite support for Caregivers, to ensure that Caregivers are able to rest, take care of themselves and avoid burnout.
Volunteers typically visit clients for 2 to 4 hours on a weekly basis. We also require all volunteers to make a one-year commitment to the hospice.
Please note the following changes in response to the Covid-19 pandemic:
In order to ensure the safety of both our clients and volunteers all volunteer support is currently taking place remotely either by phone or online. Many of our clients are particularly isolated at this time and so providing support in this way is extremely valuable.
Currently our entire volunteer training is being made available via an online platform however once Covid-19 safety measures are lifted and home visits are resumed volunteers will be expected to complete a hands-on body mechanics training session in person.
Please note that due to Covid-19 measures there may be a wait time to complete the entire training process but that we encourage anyone interested in volunteering to please get in touch with us and/or send in a volunteer application (linked below).
Please inquire about start dates for our next 30+ hour volunteer training.
Training includes both a classroom and online component. Classroom training sessions are held over several weeks (typically two weekday evenings per week) and are led by a number of engaging speakers working in the field of end-of-life care.
To download an application click here (.pdf) OR here (.doc)
Applications and inquiries can be sent to: firstname.lastname@example.org.
Who are our volunteers?
Volunteers in Hospice are:
What should you expect from the volunteer role?
The In-Home Hospice Volunteer role is rooted in offering a compassionate and attentive presence to our Clients. Activities may vary depending on a Client's needs and interests. and we take care to match our Volunteers according to their own unique attributes and abilities. Individual visits usually last two to four hours and take place on a weekly basis.
A volunteer may offer: