A Family Caregiver's Story

Editor's Note: Michele Tripi is a former Hospice of the Western Reserve home care patient who had ALS. Her daughter, Jackie Pfadt, played an integral role in her care, along with her father, Joe Tripi, and other family members and friends.  Pfadt shares the family's experiences with hospice in this interview with Clinical Connections.        

Q: Why was it so important to your mom to have a voice in her care?
A: Mom was scared. Everything about her disease was causing her to lose her autonomy. When you can no longer feed yourself, go to the bathroom alone or even raise a tissue to wipe tears from your eyes, having a say in your care matters.  While she became trapped within her own body, she could still decide who she invited into her home.  She welcomed the hospice team into our family. They  gave us comfort in our greatest time of need.   

Q: How valuable was the time you had as a family? 
A: We needed that time. I was so afraid I would sink without her. We all agree that she was waiting for us to be ready. As she continually lost more of her physical abilities, she would have little "funerals" to mourn each of the losses. We grieved these losses together, yet we all grew in our faith and became better people. 

Obviously, living with a terminal illness is extremely stressful and heartbreaking.  But we as a family went "all-in" together. Hospice of the Western Reserve created a strategy to care for Mom and enabled us to make many memories.   

Q: What were some of the challenges you faced?
A: I fell apart. I went into an extremely hard period of my life that required me to do a lot of therapy and treatment to get healthy. In our time together taking care of Mom, I learned to trust and rely on her hospice team. In the last few months, the expert clinical care they provided allowed me to be a daughter. They enabled me to get the emotional, social, and spiritual support I needed to endure the unimaginable heartbreak of saying "goodbye." Mom and I found forgiveness and peace through our work together during this time. 

Q: You shared that your mother's faith always guided her life. How did hospice help her draw upon it to provide strength?

A: We were able to share our faith and help each other grow. Hospice of the Western Reserve created a space for us to do this. Mom had a spiritual care coordinator she could talk to. She became totally reliant on other people for her basic needs and survival. She could have become bitter. Instead, she filtered this energy into her faith and became her most beautiful self. 

Q: How did hospice help your mom and the family in the final hours? 

A: Mom's nurse practitioner as well as the care service coordinator from The ALS Association came over to discuss Mom's concerns regarding her increased difficulty with breathing. Her BiPAP machine no longer made her comfortable. When they laid out the various options, Mom decided on palliative sedation, a medically induced coma, where they would get her to sleep and then remove her life-sustaining BiPAP device. Arriving at this decision gave Mom peace knowing that her struggles and fight would soon be over and that we all supported her.

Mom's doctor, nurse practitioner, nurse, nurse's aide, music therapist, and her spiritual care coordinator were all with us when she passed. Her art therapist came over earlier in the day to spend time with her grandchildren to make sure they were doing okay.  As the drugs were being administered, the hospice spiritual care coordinator led us in prayer and the music therapist sang our favorite songs.  She was surrounded by 17 of us made up of family and her hospice care team.

As her time of death approached, Mom was completely cognitive and able to speak. She was so brave and at peace. She was ready to go and her hospice team supported her and our entire family during and after.

We opened ourselves up to the opportunity, which was absolutely necessary for this to be possible.  Hospice of the Western Reserve came into our home and helped transform a life-shattering situation into a life-giving blessing. I'm not sure that any higher endorsement could ever be achieved.