Forever Grateful for Hospice
Posted by Sarah Squires-Doyle
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.
Throughout her downward spiral, no one addressed the “big picture.” We wished we could have stopped the madness and elected hospice sooner. Although we knew she had advance directives in place, we didn’t talk about them. And in the end, we all didn’t agree on what we thought she wanted done or not done. In the face of critical decisions, there were too many gray areas that made the situation extremely stressful.
My family’s experience prompted me to want to share our story with Life Matters Media who produced this video about it. We hope our story can motivate others to start the conversation about end of life wishes before a crisis occurs − to learn about palliative care and hospice and to help remove the stigma and fear associated with it.
Electing hospice was the best decision for all of us. It allowed us to finally be able to control the environment, keep her comfortable and stay around the clock with her in her final hours. Once we moved her from the hospital to what is now JourneyCare's Marshak Family Hospice CareCenter, she lasted just 24 hours. This really helped us see the value in getting out of the medical system and into a place where she would be supported to die with dignity and respect. It was the peaceful ending we all needed and one of the most beautiful and supportive settings in which I have ever been.
In closing, I can’t say enough good things about the team at the CareCenter. Our palliative care nurse, Katie Fernandez, helped us tremendously during our long, drawn-out crisis and when we transitioned to hospice. We knew she had our back and we could count on her to hold our hands through the process. In fact, every staff member I came in contact with was so incredibly devoted to patients and their families. It felt like we were all in it together.
I remember asking one of the hospice nurses how she did what she did, assuming it had to be a difficult job. She said, “It is an honor and a privilege to do what I do, and I can’t imagine doing anything else.” That really solidified my experience.
After my mother died, the grief support I received from Amy Tang, my JourneyCare bereavement counselor, gave me a deeper understanding about the mourning process. It helped me know more about what to expect and how to manage myself and others. My experience with hospice was truly a life changing experience and one that has left me forever grateful.