I was 19 and in college when my mother was diagnosed with terminal kidney cancer — too young to know much about death and dying. Although mom wanted to live independently, and did for a while, eventually the disease became too much and she moved in with my grandparents who lived 15 miles away. They took on all the responsibilities of her care —appointments, medications, bathing, feeding, errands, communication with the doctors. It was difficult and overwhelming, but they continued out of love and a sense of honor and responsibility.
On visits home, I would try to help where I could, but none of them wanted to burden me. Instead, I spent time with mom talking, laughing, watching TV and just being together. It was a gift of time, and I felt closure when she passed. My grandparents felt bereft and exhausted. In addition to dealing with the complicated emotions of watching their child’s body diminish, they also were mentally and physically worn out from the responsibilities they had shouldered the months prior.
As I look back with more knowledge and experience, I wish someone would have spoken to us about hospice care. There was so much help available, but we had no idea.
I wish my grandparents had known that a team of professionals could have joined them in their home to help care for mom’s medical, physical, emotional and spiritual needs. With hospice, a nurse comes to the home or assisted living facility or wherever the patient lives and talks with the patient and family about their desires and concerns. The nurse then speaks with other relevant professionals — doctors, pharmacists, physical and occupational therapists, social workers —to develop a care plan. The intent of the plan is to provide consistent care that delivers quality of life and pain management to the patient. This approach allows the patient and family to participate in the decisions that affect their end-of-life journey.
A patient-centered care plan would have allowed my grandparents to care for my mom and adjust the level of support as the demands of my mother’s care changed. It means they could have left the technical gobbledygook, as grandma called it, to the nurses and doctors to interpret and explain it to her in everyday language. My grandparents could have reached out when things became overwhelming and asked for additional support from those who were prepared to provide it.
Regular visits from a nurse would have helped them assess my mother’s condition and how well the medications were working without having to coordinate a visit to the doctor’s office. They also may have learned about what to expect during different stages of the illness or alternative ways to care for a particular issue. This, alone, would have alleviated concern and confusion as well as feelings of inadequacy and isolation.
Hospice care offers many other resources as well, however. A home health aide could have helped with mom’s physical care. A hospice volunteer could have helped with light cleaning and meal preparation and even been a companion to speak about what was happening. They could have received assistance with finding and getting equipment such as a wheelchair and oxygen tanks or even coordinated a weekend of respite care for my mom to allow them some time to rest and recover.
The end result would have been the same with mom passing away comfortably at home surrounded by her loved ones, but my grandparent’s well-being would have been better throughout. I think it also may have helped my mother’s mental well-being, knowing that her insurance and planning was helping to relieve some of her parent’s worries and responsibilities. Perhaps the support and resources would have allowed all of them to have more quality time together, laughing, sharing memories and enjoying each other.
If you have a loved one nearing their end-of-life journey, look into hospice care. Don’t miss the opportunity to have professional help and support along the way. Priority Placement Services can help you understand your options and get the care your loved one, and you, deserves.
By Cathy Chlarson