There is no genuinely easy way to say what I am about to, and it is by leaps and bounds a parent’s worst nightmare. Bea has been moved to palliative care. This is also known as comfort care. There is a difference between palliative care and hospice care. Palliative care will help us make end of life care and decisions for our girl.
For years we cycled through the five stages of grieving with each new physical symptom our daughter developed. While Bea’s diagnosis has always been terminal, we have been blessed to have enjoyed nine solid years so far with our beautiful, kind, and hilarious daughter. The happiness was sometimes easier to find than sadness, and sometimes inner happiness was nearly impossible to experience. At all times I sought to find inner happiness in embracing where we were in that precise moment. We are now near the end of her time here, and we must find every last drop of joy we can.
What is palliative care?
Palliative care is capable of providing a comprehensive approach to coping with a terminal or life threatening condition. The mental health importance of knowing you have a team that is on the same page and working with what your wishes are is immeasurable. Even more, when the palliative care patient is your child.
Why in home palliative care?
Palliative care is the equivalent of having a medical team at your fingertips. While hospice care is in home, palliative care can look like any number of things. Some families may be at the point in which life extending measures are not an option, and therefore having a medical team on standby to help you make your loved one comfortable and to coordinate all of the family’s needs in a seamless manner. Why have palliative care in your home? Home is where you find comfort. It’s where you get to continue to be an active part of your family. In truth, palliative care is not something typically done in a hospital. One of the few times it is provided in a medical facility is if you are in a nursing home. Otherwise, patients remain at home, but with the support system of a palliative care team on call.
On a personal level on Grieving
I have been the one to make the world’s worst phone call, and delivering the news that our daughter is terminally ill. I know how it feels to know I was about to permanently crush my husband’s world. Now I know how it feels to be on the other end of that scenario. I was sitting on the couch with Piper when the texts came in. My husband was unable to step out of the room, and these aren’t conversations you have in front of your child with emotions so raw. I stared at my phone and robotically stood up and went on the balcony of the villa I am staying in.
I sat down and watched the violent wind batter the palm trees. They stayed rooted despite the storm. They bent and swayed but never broke. The tree and I had a lot in common yesterday. Despite reaching the point where end of life care is beginning, we will continue to stay rooted in our family’s drive to find inner happiness and find joy in any way we can. Once again, we find ourselves once again cycling through the five stages of grieving. It’s going to take some time to find our footing again, but we know we will.
There is going to be a lot of grieving in our home. It will not be easy, but we will fight like mad to find a way through this together.
How can I help someone who is in palliative care and facing end of life decisions?