21: Spirit of Love

21: Spirit of Love

From Chicken Soup for the Soul: Family Caregivers

Spirit of Love

Watching a peaceful death of a human being reminds us of a falling star; one of a million lights in a vast sky that fl ares up for a brief moment only to disappear into the endless night forever.

~Elisabeth Kübler-Ross

The day I met my future mother-in-law, I was exhausted after spending more than two days in airports before arriving in Beirut. Rafiq, my soon-to-be fiancé, paused in the Lebanese sun before we entered the mezzanine-level apartment to ask if I was emotionally ready to witness the effects of his mother’s disease. “It’s pretty bad, so be sure that you are prepared,” he advised.

I was prepared for Madinah’s baldness and lethargic movements, but what surprised me was her love. It flowed from her freely and created a glowing aura of warmth that enveloped me and drew me to her. At that point, she was still able to move around with a walker, slow but still capable. The brain cancer had not yet taken hold of her limbs. She was in bed, and so I crouched down to greet her. She hugged me close to her and kissed my cheek, “Daniela!” she exclaimed, tears running down her cheeks.

Neither one of us had known whether this day would actually arrive after my trip months earlier had been postponed due to the bombing campaign that Israel had launched on Lebanon only days before my intended arrival date. The cancer had progressed to the point where it had been unclear whether she would live long enough and whether the country would stabilize enough so that I could come. We were blessed to spend the time that she had left building a relationship that would give me a lifetime’s worth of memories.

Over the final two months of her life, I stayed in her home and assisted my future sister-in-law, Isa, and Rafiq in caring for her. Having grown up in the United States, I was familiar with the practice of admitting ailing family members to nursing facilities where they would receive 24-hour care and tending. I had heard of people caring for family members in their homes, but I had never witnessed or participated in the amazing feat of love, patience, and endurance it required.

While caring for Madinah, I took my place in the family, carefully navigating the line between guest, family member, and care-giver. Isa was her primary caregiver, spending every waking moment close to Madinah’s side unless work, errands or other responsibilities dragged her away. As her cancer progressed, our roles as caregivers were ever changing and evolving to compensate for her consistent decline in abilities. The hardest to cope with physically was moving her. The sheer weight of a human body when the connection between brain and limbs no longer functions presents a challenge, but the three of us worked together to move her to where she wanted or needed to be.

Our family members all coped with the frustration of watching a human life degrade in different ways. I would seek escape on social networking sites, connecting with my friends and family back in Minnesota. Rafiq would leave the house any chance he could, so as not to have to witness the decline of his mother. Isa, on the other hand, spent every moment that she possibly could at her mother’s side. They were exceptionally close, having shared a bed for the majority of Isa’s life. This continued clear through to the end. There were times where Isa would hold her mother’s large body on top of her petite slender frame, cuddling her from behind, like a mother would support a toddler between her legs; the two of them sleeping peacefully with one of the cats dozing nearby.

There were moments of pure jubilation, too. Somehow, every moment becomes sweeter with the knowledge that few days together may follow. Opportunities for joy become as precious as the first raindrops following a drought, overflowing into puddles as our souls, like the parched ground, could not consume the elation quickly enough to take it all in. Rafiq proposed to me with his family and friends present at a surprise party he planned in our home. Madinah held onto the ring and gave it to him just before he took to his knee. When she was lucid, her memories were sometimes distorted from the tumors and the medications. Her face would light up with her beautiful toothless grin every time her eyes would fall upon my simple gold band. She would kiss my cheeks and my hand and bless us both together, sometimes multiple times a day when her memory was especially faltering.

For several weeks, she would request a Lebanese breakfast food: a sticky sweet covered in syrup with a French toast-like outside stuffed with cheese. Her requests would come multiple times a day, at all hours, morning, afternoon or evening; it was all that would satiate her hunger. Eventually, Rafiq would prepare for her cravings, rising early in the morning and leaving to seek out the vendors of the treat, purchasing up to six a day, as the three of us loved them as well. We would either freeze or refrigerate the others in preparation for her demands. Rafiq would playfully tease her every time she would place her demand—“Knefeh… where are we going to find knefeh at this hour?”—before dutifully warming one of the filling delights for his mother.

In her final weeks, we hired a home healthcare nurse to assist us in her day-to-day care. It had become too much for us to bathe her, and to manage the transfers should she need to go into the hospital. At that point, Madinah was unconscious, fading in and out, and uttering incomprehensible phrases from time to time.

I believe that caring for a loved one is one of the hardest things that a person can do, but it is also the most selfless act of goodness that one can perform during their lifetime. Just as no one questions the importance of caring for babies, so too should we recognize the life-giving quality of caring for those whose every remaining breath is a blessing.

At the end of her life, Madinah was surrounded by family, friends, and neighbors standing watch throughout the evening. We surrounded her with our love and warm conversations, her spirit enveloping us and pulling us closer together even as she lay silently in a coma. We huddled around her bed as she took her last breath, sending her on with our well wishes and love, and mourning the loss of her bright smile with our tears. I knew in my heart that the many days I spent in her presence had left me forever changed. Prior to that experience, it had always seemed as though death was something to be feared, as though being reminded of our own mortality is a threat too frightening to behold. But afterward it was suddenly clear to me that life was a precious gift, and that dying was as much a part of every life as breathing. The love that I witnessed, shared, and received left an imprint on my soul that lasts to this day, as I thank God for every day that I spend living, embracing it wholly and remembering how the cancer could not steal her spirit of love.

~Danielle M. Dryke

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