Cherishing the memories: A family member’s hospice experience

Caring for communities

After Lynn’s father died 20 years ago, her mom moved in with her and her brother. All three family members were living together again under the same roof, soon to begin a new experience.

One January day, Lynn and her brother noticed that their 97-year-old mom was eating less and less. This was the first sign of their mom’s rapid physical decline.   

Lynn is a social worker by profession and was familiar with the signs that someone was nearing the end of their life. She knew what she had to do: begin hospice care for her mom.  

Beginning hospice care

Lynn chose to pursue hospice care because she wanted her mom to pass away in a personal place as opposed to the impersonal setting of a hospital. Admittedly, she was happy to have support navigating the difficult tasks — like calling a coroner — as well. 

As her mom’s primary caregiver, Lynn talked to her physician, who made the referral to Enhabit Home Health & Hospice.   

“The person who did the assessment was amazing,” she said.  

Lynn’s mom was approved for hospice and a nurse came for the first visit the following day. From there on, there were visits from a chaplain, a physical therapist, and an occupational therapist, among others.   

“People need to know that it’s going to be incredibly overwhelming that first day or two,” she said. “After that, things calm down.”   

In Lynn’s case, visits from the hospice team began to fall into the household’s regular routine.  

They met me where I was at in my hospice experience

“My overall hospice experience with Enhabit was amazing,” Lynn said. “I felt really supported. The nurse and chaplain were caring. I realized the nurse was there for me as much as she was there for Mom. We would sit and talk. They were there and met me wherever I was.” 

Lynn remembers the day that her mom died. It was in August, about five months after starting hospice services. The nurse who was assisting her mom requested that Lynn let her know if her mom passed whenever she wasn’t there.  

Lynn made the call in the early hours of the morning and the nurse arrived within an hour to be with Lynn as she processed her mother’s death — and stayed with her all day.  

Lynn was astounded by the kindness and partnership of the whole Enhabit team. Both the nurse and the chaplain also had experiences with losing loved ones. They shared a little bit about those experiences without implying that her pain was any different than theirs had been.  

“I remember what that felt like,” she recalled them saying to her, in a gentle and comforting way.  

Lynn now calls her mom’s nurse a friend and they are still in contact.  

“It was a good experience,” she reflected. 

Learning about hospice 

Lynn understands that a lot of people don’t realize that they have a choice to begin hospice services at home. She recognizes that many people don’t think about their wishes for the end of life and what they want it to be like.

Lynn is grateful for the care plan the hospice team made for her mom and believes that it was the best choice for their family. She encourages anyone considering hospice care to think it through carefully and ask questions.   

As a social worker, Lynn knew that hospice wasn’t about her mom getting better. But she still found herself wondering why staff weren’t at her home as often as she might have imagined. At one point, Lynn had a realization — this wasn’t a situation where someone would simply take care of her mom so she could go about her life as normal.  

“This is your life right now,” she recalled thinking. “That was big.” 

Lynn never anticipated the level of support she would receive in her hospice experience.

In her line of work, everything is family-driven. She recognized that the hospice staff allowed her mom’s journey to be family-driven as well by following her family’s wishes for her care.  

Lynn remembers a time when her mother was having a rough day and she was close to calling an ambulance. Instead, she called her mom’s nurse, who reassured her that in hospice, you can begin the process of letting go and start to resist those urges.

Lynn understands why someone would call a hospital and set steps in motion to prolong a person’s life. But she remembered that hospice is all about allowing that person to pass peacefully and comfortably. 

While her mom was in hospice, Lynn found that it was helpful to have someone to talk to. She reached out to a therapist colleague and asked if she would be willing to meet weekly. It helped her to have a support system outside of her brother and the Enhabit team as she, her mom and her brother navigated the end-of-life process together.  

Having difficult conversations as a part of the hospice experience

Lynn watched her mom’s level of awareness and cognition both improve and decline throughout her time in hospice. At first, her mom asked her why a nurse was coming.  

“Mom, you’re getting close to the end of your life,” she explained. “And you’re going to need the help later. So, we’re going to start now. She’s just checking to see how you are doing.”  

Although she took the time to explain, Lynn wasn’t sure her mom ever fully understood why the nurse came to check on her. 

She also recalled the times when her mom didn’t know who she was and how hard that was. It wasn’t unusual for Lynn’s mom to wake her up at night and ask who she was. Sometimes after explaining she was her daughter, her mom would say, “I have a daughter?” 

As Lynn spent more time with her mom, her mom shared stories she had never heard before, some which broke her heart and some which she couldn’t have anticipated.  

Even on hard days, there were special moments — like the time her mom said, “I’m going to miss my kids. I hope you have a good life.”

Memories like that still pull on Lynn’s heartstrings.    

Lynn's hand holding her mother's hand during her experience in hospice care

Cherishing the memories from her hospice experience

At first, Lynn’s mom had more questions about the chaplain than the nurse. She wasn’t sure if she should continue having the chaplain come for visits. However, the chaplain became one of her mom’s most treasured guests.  

“I heard the laughter,” she said. “They would talk, she would tell her stories, and there would be laughter for an hour. I thought that was a pretty precious thing to give her at that point in her life.”  

Lynn and her mom didn’t always have the best relationship, but they made up for lost time. There are a few memories that will have an everlasting place in her mind. During her mom’s final days, Lynn remembered her mom telling her that she was lucky she was always there. 

She also remembers one special day when she woke up and noticed her mom was holding her hand. This wasn’t typical for her mom to do, so it meant that much more.  

“There isn’t a day that goes by that I don’t miss her,” Lynn said. “While the pain doesn’t go away, you get better at living with it. When you have a conversation and start thinking about it, you’re right back in the moment. And it’s OK.”  

Her mom expressed that she was lucky to have Lynn and her brother in her final days. And, as Lynn said, “We were lucky to have her.” 

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