Dispelling Myths About Hospice: An Interview with Alexandria Johnson Boone
CATEGORY: News and Community
Article originally published in C L Magazine
What do I think of Hospice of the Western Reserve?
I can sum it up in one sentence: They saved my emotional life.
Before my experiences with my mother, I thought hospice was a place people go to die. I thought: “If I take her there, she will die.” But I learned this was not true. You go into hospice care to live your best moments before the transition. This is my family’s personal story. I am sharing it here with the sincere hope it may help others.
Dealing with my mom’s illness was way, way more than I expected. Mom had a condition called Lewy body dementia. Although the underlying disease is different, many of the symptoms are like those of Alzheimer’s disease. Before I realized what we were dealing with, there were times she became so agitated and restless that she was on the move for 52 straight hours. It was exhausting for her and for us. I thought: “What do we do?”
In December 2009, we admitted her to South Pointe Hospital, part of the Cleveland Clinic system. After she was discharged, the doctor referred her to one of Hospice of the Western Reserve’s inpatient care units — David Simpson Hospice House on E. 185th Street — for assessment and development of a medication plan. The goal was to develop a plan to manage her symptoms and allow her to return home. My sister and I planned to care for our mom there supported by Hospice of the Western Reserve.
During the week Mom was there, the specialists on her team developed an individualized plan of care to address her symptoms and needs. They taught my sister and me how to administer her meds and what signs and symptoms to look for. We later took her home to begin caring for her.
Transitions can be challenging, especially when caring for a loved one with dementia. My sister and I thought we had it all together. But we didn’t. Initially, when we brought our mother back home, she became more aggressive and began acting out more. I remember saying: “Mom, we’ve got you settled back in your own home now. We will all be fine.”
We had the good fortune to have Hospice of the Western Reserve’s care at home, including a nurse, social worker and doctor. Gigi’s (as we affectionately called my mom) first nurse was named Ruth. She loved Ruth. It got to the point she looked forward to her visits. My father liked her so much that one day he asked: “Ruth, can I receive care from your team?” She said, “Mr. Johnson, you’re not ready for hospice yet but if you need us, we’ll be here for you too.” The social worker was my rock. I don’t know what I would have done without her.
As Mom’s illness advanced, we returned to David Simpson Hospice House, and Gigi became a resident there. The hospice staff became our second family. I had my own rollaway bed in her room. I spent the night and had meals there. I used their family kitchen to prepare my mother’s meals and brought my dad out on weekends, so we could all be together. I was able to cook the foods they both loved. When I had to go to work or leave town on business, I felt just as comfortable with my mother there as I would have felt caring for her at home.
One day, my best friend Michelle called and announced she intended to travel from Arizona to spend Mother’s Day with Gigi and me. She stayed overnight in one of the guest rooms provided there. Mom was still lucid at that time. The three of us sat up most of the night. It is such an amazing memory, even now. I didn’t know at that time, that It would be Gigi’s last Mother’s Day.
The difficult thing about Lewy body dementia is that Mom died for us twice: the mental death and the final transition. Hospice of the Western Reserve was there to help us get through it. I’ll never forget the day my mother looked at me and said, “You’re taking such good care of me. Who are you?” Later, the nurse gently pulled me aside and said, “Alex, you have to understand. Sometimes when your mom is talking she is not Gigi. She is not Gigi now. It’s not personal, it’s the disease.” That really helped me understand what was going on.
One night I wanted to feel close to my mother, so I climbed into bed next to her. She awakened later and called out: “Hey, hey, wake up! You’re smashing me.” She and I had a good laugh about that before I got back in my rollaway bed and went to sleep.
Mom liked to sing, so sometimes we would visit the Meditation Room and sing together. Once, when we were in there, she looked at me and said: “Now you know I am going to leave you, right?” I started to cry. She said, “Don’t cry. I am going to take you with me in my heart.” Every time I got low, something like that would happen. And when it did, It helped keep me going.
Mom had periods of being lucid. She would say things to my sister and me like, “You guys don’t think I know what’s going on, but I do.” The progression of dementia toward the end of life can be swift but unpredictable. On one occasion before she was ever diagnosed, Gigi was helping me work on my grandson’s family tree project for school, and she was doing it from memory! Two weeks later, she was staring into space. That was the beginning of our tumultuous journey.
In the end, Mom wanted to die in her own home. The doctor said she had two weeks, maybe. The Sunday morning before she transitioned, I said, “Gigi, I can’t watch this any longer. You don’t need to worry about me. I am going to be fine. (I wasn’t fine at all, but I wanted her to have peace. She wasn’t eating or drinking.) I said, “If you can hear me, squeeze my hand. She squeezed my hand. Thirty-six hours later she was gone.
Later, I would turn to Hospice of the Western Reserve again to care for my father. They played a very important part not only in the care of both of my parents, but in their transitions. I learned you don’t come to hospice to die. Yes, you may die while you are in hospice, when you are in an acute state of transition, but hospice allows family to be there. They don’t just give care, they give “hospice extra care.” While caring for the patient, they are caring for the family, too. Hospice of the Western Reserve allowed us to create some amazing memories together.