end of life story

My Parents’ Journey: Together to the End

I wasn’t prepared for my mom to be diagnosed with Parkinsonism 12 years ago. I also wasn’t prepared for my dad to be diagnosed with cognitive impairment. They were high school sweethearts, married for 53 years, and always madly in love.

My dad hired Keen Home Care to provide personal care for my mom as the Parkinson’s continued to progress. Over time, my mom began having swallowing problems and was hospitalized with pneumonia. When she returned home, her doctor recommended a hospice evaluation. I wasn’t prepared for that word. What did this mean? Was she going to die in the next few days or weeks?

Adding insult to injury, my dad’s dementia was slowly progressing. The Keen Life Care Manager had to step in and start coordinating doctor’s appointments and medications, and managing affairs around the house. My dad also was experiencing new problems with weakness in his shoulder, which moved into his left leg. The neurologist said it was from pinched nerves in his spine due to arthritis but said he wasn’t a candidate for major surgery to correct this.

I live in North Carolina, and my brother lives in central California, so getting help from Keen was welcomed. I flew home and met with the Keen Case Manager. We discussed hospice, as well as my mom’s wishes. My mom was very clear that she did not want a feeding tube or a ventilator. She stated, “I just want to go when it’s my time.” My mom had been an equestrian and a strong woman her entire life, so to see her deteriorating was extremely painful. I felt helpless and guilty because I live far away and I hadn’t been around to help.

I learned that hospice is not a death sentence but comfort care and part of the journey of life. We all agreed with Mom’s wishes to receive end-of-life support at home. The next day, Keen staff moved my parents’ king-size bed downstairs to the family room, and we set it up just like their upstairs bedroom. My parents had never slept apart, and neither of them was safe to go up and down the stairs any longer. Mom and Dad were thrilled with the new set-up.

Thankfully, I was able to take time off work and spend the next several weeks with my parents. Mom and I had important talks, and she expressed her worries about my dad after she was gone. When we talked with my dad, he teared up when he looked at my mom, and then he walked over and gave her a kiss. I could see the deep love between them, as well as their worry for one another. Regardless of the rapid decline I was seeing with my dad, he would always say, “I’m doing just fine.”

One day when my mom was telling me a story about her riding days, she looked happier than I had seen her in a long time. I had the idea to bring my aunt’s horse to the house for a visit. Unfortunately, my mom wasn’t strong enough to get up into her wheelchair, so the Keen staff helped move furniture to clear the way for my aunt to bring her horse, Rosie, into my mom’s room. When we opened the French doors and brought Rosie into the house, my mom lit up like a Christmas tree. I cherish that joyful memory with my parents.

A week later, Mom passed away peacefully with our family by her side. What we didn’t know is that we would lose my dad only five days later. I was fortunate to be lying on his bed, holding hands and sharing stories about Mom, when he passed. My catastrophic grief was only muted by my knowledge that my parents were together again, and neither of them would have it any other way. I realize now that they were hanging on for each other.

Words cannot describe how important it was for me to participate in my parents’ journey. We learned a week after Dad’s passing that his new specialist at UCLA diagnosed him with ALS. Thank you, Keen Home Care staff, for loving my parents, taking amazing care of them, and teaching me the beauty of hospice care.

Much love,

Patty T.

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