Hospice Came Today

My mom dedicated her life to her children. She took care of us. GOOD care of us. All while battling her own demons. She is kind-hearted, loving, and funny. Christmases, Easter, and our birthdays always brought great gifts, above my parent’s means. And today, hospice came for her.

I have written about this recently, so some of you may know my mom has a Glioblastoma tumor on her temporal lobe. Her tumor is in-operable; after five weeks of radiation and chemo, the tumor has almost tripled in size. The doctors told us the words we were dreading-there is nothing more they can do for her. So we brought her home to keep her comfortable and surrounded by her loved ones as she transitions to whatever comes after this life. That is where hospice comes in.

The hospice intake team explained that hospice isn’t for people to die; instead, It is for people to live out the rest of their time without appointments and treatments, comfortable and pain-free. They also help support the family throughout this time.

What is Hospice?

“You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”

--Dame Cicely Saunders, founder of the first modern hospice

Hospice care is a specific type of care given to those with a terminal illness. People tend to think that hospice helps you die. That is what I thought hospice was as well. But it is not. The goal of hospice is to help people in the final stages of life live out the remainder of their life with comfort and dignity. Hospice sends a nurse once a week and an aide twice a week, as well as twenty-four-hour phone support.

Full-Time Caregiver

Since my mother’s diagnosis in September, my sister and I have been caring for my mother full-time. She had to return to work once her leave of absence was exhausted, so now I am my mother’s primary caregiver. My mother lives with my sister, and to bring my mother home, we turned the living room into a hospital room-but she is home with us now. My sister works during the day, so I take care of my mother during the day and then again overnight.

Cancer stole my mother’s words first. Cancer has caused aphasia. She can understand what is said but can’t find the words to respond.

Cancer robbed her of hearing and vision on her left side. She has no peripheral vision, and we have to be close and directly in front of her.

Next, cancer took her mobility. She started falling at home. She can take a few steps with someone helping her. She has no balance when she does stand up, and she leans to the right. Now she is bedbound most of the time.

The steroids she takes to combat the swelling in her brain make it hard for her to sleep at night, so most days, we are all exhausted.

Cancer has destroyed her independence and modesty as well. She now depends on us for meals, personal care, and bathroom use.

What’s next?

Before my mom came home, the doctor told my siblings and me that the treatment wasn’t working and there was nothing more to do. We asked him for a time frame; in his opinion, it could be a few weeks to a couple of months before she passes. So what’s next? It feels like we have to wait. My mother feels like she is waiting to die. We continue to care for her. My sister and I talk to her about good memories throughout our lives. There are times when we laugh about something funny.

We have prepared all of her grandchildren that her death is imminent and that they need to be around the next couple of weeks, so my mom gets to see all of them. I firmly believe that she will pass on once my mother sees her siblings and grandkids.

Next for me is working through all of the emotions I have. I am angry most of all. No one deserves cancer, especially not my mom. I’m mad that life goes on for people when my life is being forever altered. I’m sad. Sad for all the things she will miss. Sad for our loss. I am grateful. Many people do not get the time I have with my mom. I’m thankful for hospice as well. I’m empathetic toward my mom, who cannot communicate her emotions. I find that my bargaining with God isn’t for a miraculous cure-I am a realist. Instead, I’m bargaining for her to move on pain-free and at peace.

My mom is so loved, and she will be missed by many. I hope that her mother and my father will be there waiting when she gets where she is going. And I am convinced we will see her again when we get there.