How I Managed In-Home Hospice During COVID-19

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Mr. T. I’m a 34-year-old millennial man from Florida. I am currently a caregiver for my 76-year-old mother who is in hospice at home due to cancer.

What did your life look like when you became a caregiver?

I should preface that my wife and my elder brother also serve as caregivers. We all live in the same household and provide different types of care for my mom. We knew my mom’s cancer had spread and that at some point it could result in her decay. That decay didn’t happen as fast as I thought it might (two year battle and still fighting!), but the transition to hospice seemed rather sudden.

Before becoming caregivers, my brother and mom would spend a lot of time watching TV — her mobility became increasingly limited because of the cancer — and my wife and I tried to get out as much as we could, even if just for a walk down the street.

We would have nightly family dinners full of laughter and love and tried to have family activities at least once a month, opting for outdoor adventures or movie nights depending on the mood. My mom was retired, but the three of us were all employed (and thankfully still are). No children as of yet and I am thankful in some ways because I feel like that would have made this a much more challenging journey.

Who did you care for and what prompted their need for care?

I think, like many families, it took me awhile to appreciate my mom and her love. We had a good relationship, but I’d say it wasn’t until the last three years that I really understood the person she was and how she impacted my life. Once I realized that my mom and I were similar, I was able to better comprehend her decision making and why she would make the choices she did. I love my mom and I will always try to follow her philosophy that kindness and laughter were two of the most important components for a happy life.

We were really hitting a stride as a family before the cancer appeared. First in her neck, then in her spine, and ultimately now throughout her body. It was not until about three weeks ago that she was discharged from her latest hospital visit into hospice here at home and thus our roles as caregivers began.

What was a memorable learning?

We were very hesitant to set up hospice at the house. My mom had stated she did not want to die at home and truthfully, we weren’t prepared for that possibility either. We wanted to set her up in a nursing facility, but because of COVID-19 that meant we would never be allowed to see her. As challenging as we thought the road ahead might be, we all agreed it was too heartless of a decision to have my mom die alone.

The first two weeks of providing at home care were very, very challenging. There was a lot of confusion. Are we making the right decision? Can we care for my mom effectively? How do we care for my mom? There was a lot of anger. Why do we have to care for my mom? When can we live with less burden and start to enjoy our own life? We can’t give anymore; we’re already so depleted. There was a lot of sadness. It is hard to come to terms with the invisible permanence that accompanies someone you love, leaving the senses as we understand them. Will she ever be able to feel our gratitude, our love, for the person she was and the people she made us into?

After the first week, if you’re lucky, you start feeling more confident thanks to a support network from friends, family, and your hospice team. We had a few hiccups early on in the hospice process. Things like not receiving materials, health aides not showing up, etc. But those seem to have smoothed out and I’m sure COVID-19 played a role in staff complications.

What surprised you about caregiving?

I think everything that we have encountered so far is something that I somewhat expected, but it is still a very challenging process. Honestly, the degree of difficulty is probably what has surprised me the most. I knew how trying this all could be, but I’m not sure I was fully prepared for it.

For me, it was uncomfortable at first to care for my mom in ways that a parent cares for a newborn child. Cleaning genitals was something I was particularly not looking forward to, but you get used to doing it and ultimately it means providing your loved one with comfort. That’s what matters. This is a hesitancy I had with parenthood as well and I think I may have quashed that concern.

I was also unprepared for how taxing the entire process is on the psyche. Even as we developed a rhythm, exhaustion would overcome us by the end of the day and the next morning there is still a feeling of depleted energy. Now the challenge that awaits us is watching my mom live her last days on this planet. Her speech is becoming more unintelligible, her lucidness is rare, and I can see the life being drained from her eyes when I look into them.

How do you try to balance being a caregiver while caring for yourself?

Everyone will have a different experience with this. I think it’s important to try to breathe, take time for yourself, and appreciate the time you have left with your loved one. Ensure that they feel loved and comfortable in their final days, however many days that might be. It is a burden, but it is also a privilege to sacrifice some of yourself for someone else you love.

Many people are passengers on this journey, but don’t lose sight that the primary destination is reserved for only one person. Your goal is to make sure that person gets there in peace. With that said, don’t be afraid to feel and embrace the emotional elements that will make you feel selfish and guilty for feeling them in the first place. You are providing a lot and it’s okay to try to manage your emotional well-being during this time.

My wife told me the other day that my mom would be proud of how I have handled this situation. If that is how my mom would feel, then I have done a good job being the best caretaker for her that I can be, and that goes for my wife and my brother as well.

What resource would you recommend to caregivers?

Our hospice team (Hospice of the Comforter in Florida) had a pretty substantial guide for what to expect during the process. It was really helpful.

What advice would you give to caregivers?

Much like the patient who suffers during this transition, we as caretakers must also endure.

Is there anything else you’d like to share?

My mom is a Catholic, so as I noticed her health begin to deteriorate rapidly I requested that a priest come by to read her last rites. Even in her minimally lucid state she could still make the motions of the cross as she followed the priest’s words and even cracked a joke which helped us all smile despite the tears. I’m glad that my mom can be with God and I hope that provides her some spiritual peace as she transitions from this world to the next.