It was difficult to understand our options when my mother neared the end of her life. But working with hospice care gave us peace of mind.
My mother, Mary, believed strongly in thanking people when they did something well, and she raised us to do the same. She also would let you know if you did something she didn’t like. After she died in February, we felt it was important to complete and mail the letter she’d written to her care team at Northwell Health’s Hospice Care Network. It began:
“ ... I cannot find enough words to let you know how much I and my family appreciate the high level of care and support that Hospice has given us. I was a boat floating on the Great South Bay without oars. Hospice has provided the oars that are helping me swim in the turbulent water of my medical care.”
The comforts of home
My mother was a kind, independent woman who lived to age 91. She was widowed at age 47 and had seven kids to raise on her own. With seven, you have to be strong, or you’ll get overrun by a mutiny!
My siblings and I grew up in Brightwaters, NY, in the same house our mother lived in until she passed away. She loved flowers and was so proud of her beautiful home and the wonderful garden in her yard. Being in her home brought her comfort, and she was adamant about wanting to live out her final days there and not in a hospital. Hospice care allowed her wishes to be met.
Our experience with hospice began last December. My mother had been struggling with chronic obstructive pulmonary disease (COPD) and was on 24-hour oxygen support, which made it hard for her to get around. She was between primary care doctors, and when a new medication was incorrectly prescribed, her condition started to decline.
At the time, my brother was living with Mom, my sister was serving as her health advocate, and the rest of the family were all so supportive. But eventually, the level of care she needed exceeded our abilities. It soon became apparent we needed help and guidance.
Living across the street was a lifelong friend of my mother, Marie, who had worked in hospice care for many years. In fact, Marie was the reason Mom had been a hospice volunteer decades earlier. Although hospice was a familiar concept, I wasn’t sure how receptive my mother would be to the idea of enlisting their support for her own care.
Shortly after an incident with Mom’s medication, and a lack of consistent care management, she started to decline. I approached her and said, “You know, Mom, this isn’t looking good. Would you consider calling hospice?”
To my surprise, she answered, “Absolutely.”
We enlisted the help of my mother’s pulmonologist, who certified that she qualified for hospice care. Once that was done, we called Northwell’s Hospice Care Network at the Fay J. Lindner Foundation Hope & Healing Center in Bay Shore, and they came to the house.
The gift of hospice care
Once our hospice team was on board, everything changed. They provided nursing care, counseling, therapy, supplies, and more. We had a wonderful nurse we called “Charming Colleen” and a lovely home health aide, Christina. Even though our family was available to help, sometimes we needed someone who wasn’t a family member to give us a break or to keep Mom company while we ran errands. And we knew we could step away because she was in competent, caring hands.
But the best part of all was that anytime my mother needed help, whether it was medicine, a wheelchair, or a special bed, the hospice team took care of it. It was like Cinderella getting ready for the ball. They waved a magic wand, and whatever she needed was delivered to our door, usually on the same day. We were grateful and amazed—and so very relieved.
The caretakers coming to the house were a gift. While on 24-hour oxygen, just walking was a challenge for my mom. With hospice, we no longer had to go to the doctor’s office—the nurses came to us. We were also grateful to avoid the stress and paperwork of coordinating her care because hospice handled it all.
When you work with hospice, there is always someone available from your care team. We never had to wait for appointments or chase down a doctor. For my siblings and me, it was such a relief having the nurses to talk to and to listen to our concerns. Colleen would answer anytime we called, and when my mother passed away, she came right over, advised us on what to do, and gave us bereavement resources to help us cope with our loss. It was such a blessing.
What surprised me about hospice
I’m in my 60s, so I’m familiar with hospice because I’ve had friends who have gone through all of this. But one of the things that still surprised me was how organized it was. Hospice services are set up in a way that makes it smooth and manageable for people who are in crisis. They were right there to guide us and never lost sight of the goal to make our mother comfortable and to help her stay in her home and with her family.
My siblings and I are all professionals and grown adults. But when my mother got sick, we felt lost—like little children facing a situation where we didn’t know what to do. Having hospice’s compassionate support and guidance was priceless.