The Compassion We Remember, The Caregivers We Sometimes Forget

When people hear the word hospice, they often think about death. When I hear the word hospice, I think about my mama.

Before illness entered our lives, my mom was the kind of person who was always moving, always doing something, and always taking care of someone else. She loved spending time with my grandma, whether they were fishing together or making one of their favorite trips to the casino. She babysat what felt like every newborn in our family and somehow had enough patience, energy, and love for each one of them. She was the best Mammie to her grandchildren, especially Coty, her first grandbaby. She took them outside to play, attended games and school events, made holidays feel so magical, and created the kind of memories that become treasured pieces of our hearts. She owned her own small business, loved getting dressed up, always had her hair done, enjoyed looking nice, and never missed an opportunity to dance when a favorite song came on. She was full of life, full of laughter, and full of love. More than anything, she was my best friend.

Then everything changed.

My mom was diagnosed with COPD, and for years, I watched her fight a battle that slowly took more from her physically but never diminished the strength of her spirit. More than once, she outlived what doctors expected, and somehow kept finding the determination to keep moving forward. If there was one thing my mama knew how to do, it was fight for the people and the life she loved. Looking back now, I realize just how much that fight cost her. There were days when she could appear relatively okay, but only because she carefully rationed her energy and chose her movements wisely. What made it so heartbreaking to watch was knowing that slowing down was never who she was. Seeing a woman who had spent her entire life living so fully become limited by every breath was heartbreaking. The disease may have changed what she was physically able to do, but it never changed who she was at her core—a fighter, a nurturer, and the person so many of us depended on and loved.

Part of what kept all of us going through those years was hope. My mom was on the lung transplant list, and that gave us all something to hold onto. We imagined the day the phone would ring. We talked about what life would look like afterward. We joked that she would get a new lung and outlive all of us. As long as she remained on that list, there was always a possibility that things could get better.

Looking back now, I realize that hope was complicated. It gave us a reason to keep believing, but it also allowed us to avoid some difficult truths. The transplant list was never a guarantee. One infection, one hospitalization, or one setback would make her inactive. It felt like a constant cycle of being on the list, then off, then back on again. Deep down, I think all of us knew that by the later years of her disease, her body had already endured so much that surviving a transplant would have been incredibly difficult even if a lung became available. I think she knew it. I think we knew it. But none of us wanted to say it out loud because as long as hope remained, we did not have to fully acknowledge what we were slowly losing, her.

When the hospice nurses first began visiting my mom, I do not think I truly looked at it as end-of-life care. Looking back now, I am not sure if I just refused to acknowledge what was happening or if my mom had become so good at protecting us from how much she was actually struggling. She had always been the person taking care of everyone else, and even as her health declined, she continued trying to shield us from the reality of what she was facing. Because of that, they felt more like additional support than a sign of what was to come.

At the time, I was still my mom's primary caregiver. I loved being able to care for her, but the responsibility carried a weight I did not fully understand until later. Every day brought new concerns. I worried constantly about whether she was comfortable enough, whether I was doing enough, whether I was missing something important, and whether she was receiving the care she truly needed. My days became centered around helping her with her medicine, oxygen levels, symptoms, making sure she ate, helping her dress, bathe, and just trying to stay ahead of whatever challenge might come next.

What made it all even heavier was that neither of us was carrying only her illness. We were both carrying grief. I was still trying to survive the devastating loss of my son to suicide and the loss of my brother. Those losses were shattering, and I was still struggling to navigate them. My mom was grieving them, too. She had lost her grandson and her son, and while she was fighting for every breath, she was also carrying heartbreak that no mother should ever have to endure.

As I look back now, I realize she was not only worried about her own health. She was worried about me. She watched me struggle after those losses. She watched me make decisions born out of pain, confusion, and heartbreak. Decisions that came from trying to survive grief rather than heal from it. At the time, I did not fully understand how much stress my struggles added to an already overwhelming burden she was carrying. She was battling a devastating disease, grieving unimaginable losses, and still worrying about whether her daughter would be okay. Knowing that now brings a guilt that is difficult to put into words because the very person who had spent her life protecting me was carrying additional worry because she was watching me fall apart.

Trying to care for someone else while your own heart is broken is exhausting in ways that are difficult to explain. Grief drains you emotionally, mentally, physically, and spiritually. There were days when I was trying to care for my mom while barely knowing how to care for myself. I spent so much time focused on trying to survive, trying to help her survive, that I often forgot how to simply be her daughter. Even when I was sitting beside her, my mind was occupied by everything that still needed to be done. I was constantly worrying about something: what struggle might come next, and the thought that I was failing her.

Then my mom decided she wanted to move into the hospice house.

At the time, I understood the practical reasons. Her breathing had become more difficult, her needs had increased, and she needed more care than could realistically be provided at home. Looking back now, however, I believe there was something deeper behind that decision. My mom knew how hard she had fought. She knew her body was growing tired. And I believe she also knew she did not want us carrying more than we already were. Even then, she was still trying to take care of the people she loved.

I also believe she was preparing me.

The day she entered the hospice house was the day I couldn't avoid the reality she had accepted long before I did. My mama was trying to prepare us for goodbye, even though none of us wanted it.

As painful as that realization was, moving into the hospice house changed everything for us. For the first time in a very long time, I was no longer consumed by caregiving responsibilities. I knew she was being cared for by people who understood exactly what she needed. I knew she was comfortable. I knew she was safe. And because I no longer had to spend every ounce of energy worrying about if I was taking care of her as she needed, I was finally able to focus completely on her.

We talked in ways we had not talked in years. We talked about grief, loss, fear, faith, regrets, worries, and the people we missed. We talked about things that had remained buried beneath years of survival. We shared the heartaches we had both been carrying. We cried together. We laughed together. We remembered together. Without the constant pressure of caregiving hanging over every moment, we finally had the emotional space to simply be together.

For the first time in a long time, I was not primarily her caregiver, and she was not primarily my "patient". I was her daughter, and she was my mama. I held her hand. I laid beside her. I listened to her stories. I watched her rest. I soaked in every conversation, every single smile, and every moment I had left with her. Those final days were not about taking care of her; they were about loving her.

Looking back now, I do not think the hospice staff fully realized what they gave us. They did not give us more time because no one has the power to do that. What they gave us was cherished time. They allowed us to be fully present with one another. They gave us room to have conversations that might never have happened otherwise. They gave us the chance to stop surviving and start simply being together.

My mom often referred to the hospice staff as her best friends, and honestly, that is exactly what they became. They treated her with kindness, dignity, patience, and compassion. They listened to her stories, laughed with her, encouraged her, and reminded her that she mattered by how they treated her. Even as illness took more from her physically, they never stopped seeing the vibrant, beautiful woman she had always been.

Their compassion extended to our family as well. They answered questions before we knew how to ask them. They reassured us when fear crept in. They brought peace into moments that felt overwhelming and walked beside us through one of the hardest chapters of our lives. Their presence became a source of comfort at a time when comfort felt difficult to find.

As the years have passed, I have often reflected on those caregivers and the role they played in our story. My mom's story. Their care is something I will never forget, but I have also come to appreciate something I did not fully realize at the time. We often remember the care hospice workers provide, but we sometimes forget that they grieve too.

Not in the same way families grieve, of course, but they spend weeks and months building relationships with the people they serve. They hear family stories. They witness laughter and tears. They celebrate victories and support families through heartbreak. They invest pieces of their hearts into people they know they will eventually lose.

My mom mattered to them, and I could see it in the way they cared for her. I know she was not the only one whose life left a mark on their hearts. That is part of what makes hospice such a remarkable calling. These caregivers willingly walk into heartbreak again and again because they know someone needs them there. They carry burdens that do not belong to them simply because they care enough to help shoulder them.

Galatians 6:2 tells us, "Carry each other's burdens, and in this way you will fulfill the law of Christ." 

I have always thought that verse beautifully describes hospice because they step into some of life's hardest moments and help families carry burdens they cannot carry alone.

I also think of Isaiah 41:10, which says, "Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." 

Looking back, I can see God's presence in many places during those final days, but one of the clearest examples was through the people He placed around us.

The care they provided will never be forgotten, and neither will the love behind it. Hospice is about far more than helping someone die comfortably. It is about helping people live their final days surrounded by dignity, compassion, and love while allowing families to cherish every moment they have left together. For me, hospice gave me one final gift I did not know I needed. It gave me the chance to stop being my mama's caregiver and simply become her daughter again. That gift is something I will carry with me for the rest of my life.