Mary Ioven with family pictures of herself with husband Khalid Abbady and son Sean.

Our Care Dimensions Hospice Team Brought Compassion to My Husband with ALS and Our Family

I met my future husband, Khalid Abbady, in August of 1994 when he gave my family and me a tour of Youville Hospital. We both felt an instant connection. A year later this Irish Catholic married her Muslim man in a private Muslim ceremony. This ceremony was important to him because he was a very spiritual man. We settled into our wonderfully ordinary suburban life and then had our son, Sean, in 2012.

In late 2020, after Khalid, 63, came back from walking our dog, Patrick Star, he told me he had fallen. I joked, saying he just didn’t know how to walk our very active, 85-pound, untrained dog. When he fell again in our driveway, we wanted to know why, so we went to urgent care, where they referred us to a neurologist. We thought he would be going in for physical therapy but on January 26, 2021, Khalid was diagnosed with ALS — amyotrophic lateral sclerosis — which I couldn’t have described or even spelled at the time. Our entire family was in shock.

I’m used to knowing what to do, but now I confided to Khalid that I didn’t know what I was doing, because I just didn’t know what would happen next. Khalid’s condition was changing every day, from morning, to afternoon and evening. I became more reactive as I was going through it. I constantly asked myself, “What am I missing?” I felt lost most of the time.

Caring for Each Other
Sean and I managed the day-to-day caregiving for 10 months on our own. In that time my 9-year-old never missed a test, a homework assignment, or a swim meet. We were in overdrive. Sean read to Khalid in his wheelchair, while Khalid made sure Sean finished his homework and tested him on spelling and vocabulary. We were getting it done. We went out on family walks, drives, and to the Y, where he had been swimming up to a month before, and I wheeled him into the shower to bathe.

It was Labor Day when he started coughing. His doctor said Khalid had pneumonia. In early October he had his second round of pneumonia and his condition was declining. We were strongly encouraged from Khalid’s neurological team to reach out to Care Dimensions for extra help and support from the hospice team. We were told they were the best.

Hospice at Home, Not Alone
How our hospice team showed us compassion from day one and every step of the way was nothing short of miraculous. The hospice team did an assessment and figured out what we needed to make him more comfortable. The hospital bed arrived the next day along with oxygen and medications. The equipment arrived when they said it would, the nurses were a phone call away at all hours of the day, and Annie O’Connor, Khalid’s nurse, meant the world to us. I began feeling not so alone. I knew Annie was in it with us for the long haul. Her first visit with Khalid was for an hour and a half and quite personal. She held Khalid’s hand, looked directly into his eyes to speak to him and asked him how he was feeling, about his past and growing up. In the last 10 minutes she asked how he was feeling that day. That’s how Annie brought me into the conversation — it was beautiful how she did that.

I had resisted Khalid going into hospice because I thought it meant the end. But Care Dimensions brought calm to the house and our little family kept going. Every time Annie came, she spoke and looked directly at Khalid and showed us all such compassion.

I told Annie I didn’t want a hospice aide to help with Khalid’s personal care because I didn’t want another person in my house and she told me, “Yes, you do.” And she was right. “Don’t be afraid,” she said, and she made sure I was comfortable with each task related to his care. When I was relaxed, Khalid was relaxed. I appreciated having someone look out for my best interests. I didn’t know how much I needed it. Having that extra someone looking out for us, in what would be Khalid’s final weeks, meant the world to Sean and me.

Caregiving, a Learning Experience
When Khalid’s medications were changed, Annie was there to explain why and how much. She showed me how to measure out the meds, made sure I knew how to apply, administer, and track them. She taught me how to operate the equipment to help Khalid breathe better. He continued to feel valued and validated and heard.

In the final two and a half weeks, the disease turned very aggressive, and I didn’t know how much worse it would be. Khalid still said his prayers five times a day, but he started losing even more of his speech. I didn’t realize how fast Khalid would decline. He was in hospice for less than three weeks. I ask myself now, “How did I not know that Khalid was about to die?”

My beloved husband of 26 years passed away on November 1, 2021. I don’t think we could have managed Khalid’s last three weeks alone, especially his last three days. As a little family, we made the decision to have Khalid to remain at home, but we couldn’t have done that without Care Dimensions. We’re so grateful to his whole hospice team. Our aide was a blessing; chaplain Donna Spencer Collins gifted us with her spiritual counseling. My son and I are now receiving bereavement support.

All Khalid wanted from Care Dimensions was compassion. The whole family received that and so much more.

About the author
Mary Ioven is a mom and a retired executive assistant.