When my vibrant 89-year-old mom stopped eating, I didn’t think much of it. She’d always gone through spells where she’d say nothing tasted good. Not eating never slowed her down. She’d still zip up and down the stairs, do her daily drive to the grocery store and walk around the yard picking up tiny twigs and leaves that the lawn mower missed.
But this time was different. Very suddenly ― almost overnight ― she needed help getting out of the bathtub. She felt funny. Something wasn’t right.
And then my whole world changed.
Mom had moved in with us a few years before, after twisting her ankle going to get a hamburger in the rain, and just never left. We were happy to have her; we had one kid leaving soon for college, I had gone back to work and she hated living alone. Plus, she loved cooking for our family, which was always a welcome help.
One night, something roused me from my sleep, and I went in to check on her. She was agitated in her room. When I asked what was wrong, she kept saying: “I don’t know. I don’t know.”
I called 911, and within 24 hours we had a diagnosis: kidney failure. The options were not great. We could go the dialysis route, which I knew right away was out of the question; due to her religious beliefs, she’d never had a regular doctor or taken so much as an aspirin in her life. Or we could take her home and she could go into hospice care, with me as her nurse.
It was a no-brainer. It was also terrifying ― like leaping into the great unknown. Hospice care can last from two days to two years. I didn’t know how to bathe an adult or care for someone who won’t eat, and I definitely didn’t know how to administer morphine, which is often a big part of home hospice.
The one thing I knew for sure was that I couldn’t bear to see my mom suffer.
I broached this with her while she was still in the intensive care unit.
“Mom,” I started, trying to hold myself and my voice together, “if we do the home hospice thing, I know you don’t like the idea of medicine but I can’t sit by and watch you suffer. You have to be OK with me giving you pain meds.”
At that point, I think she would have agreed to just about anything to get the hell out of there. “Yes, honey, that’s fine. I just want to go home. When can I go home?”
It was heartbreaking. Leaving the hospital meant I was going to help her die. A nurse handed me a long list of hospice care providers, and my husband and I sat outside in the car for an hour, overwhelmed. We split the list and looked up as many as we could on our phones, trying to make a quick decision. Time was of the essence. At that point we didn’t even know if she’d last the weekend, but all I knew was that she wasn’t going to take her final breath in a hospital.
We settled on a hospice group in our area with good reviews, and the staff assured us that the cost would be covered by her Medicare supplement. I was so grateful that my mom had maintained her coverage.
The staff would go to our home the following day and set everything up ― the hospital bed, the bedside potty, an oxygen tank. A nurse would arrive later that night and explain all the meds to me. I would take a leave of absence from my part-time job at the library.
The next day was a blur. We left the hospital 10 minutes before the ambulance that would bring her home and quickly cleared her bedroom to make space for the medical equipment. There are different tiers of home hospice care, but since I would be the primary caregiver, I could choose how often I needed a nurse to come by for extra assistance. I chose two to three times a week, but I could change the frequency to meet our needs. The staff members were great about answering all my questions and assuring me that they’d be available every step of the way.
A very kind hospice nurse showed up that evening with five different pain relievers ― ranging from aspirin to morphine — and explained how and when to administer each one. Suddenly, the decisions were all mine.
I felt that I was in way over my head. But the nurses told me that I could call for help anytime, day or night, and that they’d arrive two or three times per week to bathe and check on her.
It was like stepping out into a dark abyss and not knowing how or when I’d come out of it ― but knowing that when I did, my mother would no longer be with me.
My husband worked from home and could help me some, but I was an only child who didn’t have much local support. For the most part, it was all going to be on me. All I knew was that my mom would’ve done anything for me; I could do this for her.
And now, a little over a year since her passing, I wouldn’t change a thing. Her time in hospice, with me by her side ― which lasted almost three weeks from beginning to end ― was a gift I never saw coming. I wouldn’t trade it for anything.
Here are five unexpected gifts that home hospice care gave me:
1. I learned the importance of sharing my pain. Every other day when a nurse would show up to bathe my mother, another one would come to talk to me. “How are you feeling?” she’d ask. In the beginning I thought she was there to assist with my mom ― but after three visits, I realized that the second nurse was there for me.
Initially, I just made polite conversation. But by the end of the first week, I’d break out in tears as soon as we sat down, and I’d share how hard this experience was for me. She’d nod, reach out and touch my hand, hug me — but most importantly, she’d just sit there and listen. Some days I wouldn’t have much to say, and other days it would pour out of me. I always felt better afterward. I felt heard, supported, understood. It made the tremendous weight of it all easier to bear.
2. I got to care for my mom as she had cared for me. Raising me was just the first part of my mom’s job. She was there anytime I’d call ― when I flunked out of college, or after a breakup, a botched haircut, a broken engagement. She always found the right words to make it all seem bearable. She slept over whenever one of my kids was sick ― right by their bedside ― so I’d get a break.
Helping her now was the very least I could do. She was at home, with us, where she’d hear all the familiar sounds of our dogs barking, Amazon deliveries arriving, my husband making Zoom calls, my kids coming and going. More importantly, she’d be a world away from spending her final days in some foreign room with machines beeping and blood pressure checks every two hours. I basked in it. I learned to sponge-bathe her, help her to the bathroom, apply ointments and ― later ― administer enough morphine that she wouldn’t feel her body shutting down.
3. We got to say goodbye to each other. Many years earlier, my father had died suddenly and without warning. We’d had dinner together, and by the time I’d driven back to my apartment, he’d lain down in his recliner and passed away. I was always glad that I saw him right before he went, but there are things I would’ve wanted to say to him if I’d known it was the end.
With my mother in hospice, I didn’t know if it would be days, weeks or months, but I knew her death was imminent ― that much was clear. I asked her advice on everything that was currently going on in my life. I questioned her about what she wanted me to do with her jewelry, her money, her car. I apologized for all the times I was an ass to her, from grade school to the present day. She forgave all of it as soon as it happened, she said. I asked how she’d always stayed so optimistic and upbeat after losing her own siblings, a husband and many friends. “You look at who’s left,” she smiled. “That’s who you focus on.”
She wanted us all to forgive each other’s petty grievances and be kind to one another. I promised her we would. I told her what she meant to me. She told me I was the best daughter a mother could hope for. We cried. We laughed. Some days, we’d just hold hands. But nothing went unspoken.
4. I experienced a profound life transition. As hard as it was to watch the light leave her eyes and her body begin to shut down, I realized I was witnessing the natural progression of life. But this is especially hard to accept when it’s someone you love.
During the final few days, when Mom became unresponsive, I would sit quietly with her. When I’d speak, her breathing would change. I felt like she could hear me, wherever she was. But I also didn’t want her to feel I was holding her back ― that she had to remain there with me.
By the time the nurses visited, my mother’s breathing had grown rattled. They told me that a chaplain would come the next day and that I needed to make funeral arrangements. That night, I held her hand and told her it was OK to let go, that I would be OK ― these were words I knew she needed to hear. As soon as I awoke the next morning, I knew that she was gone. I stood over her, memorizing her sweet face, in awe of how the body is just a shell that houses those we love.
5. I saw that we have a choice in how we view things. When my mother was in the hospital, she called a close relative and told her that she had decided to go into home hospice care. The response was, “Hospice is just a deathwatch.”
I suppose that’s one way to look at it, but death is coming for us all. If you could have the choice, I think going at home — in your own bed, surrounded by familiar sights and sounds and people who love you — would top the list. Was any of this easy? God, no. Do I appreciate every last moment I got to spend with her? Yes, so very much. It was her final gift to me ― this extended goodbye ― and it was priceless.
I once read that a way to honor those you’ve lost is to become what you loved most about them. My mom was my biggest cheerleader, the first one I’d call with news, either good or bad. Now, in honor of her, I am more gentle with myself. I speak to myself as she would: “I knew you could do it. I never had any doubt.” I’m trying to take the best of her and make it also the best of me.
I know not everyone is able to have the opportunity I did ― whether that’s due to financial issues, the level of care needed, a lack of time and space at home, or the possible erosion of the relationship they share with their parent. Or maybe it’s just too hard. I understand and I respect any ― or no ― reason for not being able to provide hospice care, but I feel incredibly lucky that I could be there with and for my mom at the end of her life. And I would recommend it to anyone who can and wants to do the same for their parent.
During our final few days together, as Mom sat perched on her home hospital bed, I began to go through her drawers to get things organized while she supervised. She was not one for sentimentality, and her treasures were few. She had a framed picture of her mom and dad, some things my kids had drawn her when they were young, and her high school diploma. Looking at it, I noticed she had graduated second in her class.
“You never told me that,” I said. “It’s kind of a big deal.”
She smiled. “Honey, it was a small school.”
I also noticed that her motto in high school was, “Forward.”
That’s the way she lived her life: never looking back, always living in and appreciating the now. That’s what she would want for me.
Forward.
Courtenay Rudzinski is a writer in Houston, where she lives with her husband and two rescue pups. Her handle on Instagram is @courtenayr.
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