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How Long Till I Can Die? A 5-Year Journey in Hospice Caregiving

Often the most profound lessons are experienced during the most vulnerable moments in life. From 2008 to 2013, my wife, Karen, and I served as hospice caregivers for our mothers, keeping both of them in our home for as long as the nursing agency felt it was safe and doable, and then caring for them daily at a facility near our home until their respective home-goings. To say with the adage, “It was the best of times, it was the worst of times,” is an understatement. It was a time marked by roller coaster highs and lows: unspeakable sadness, sorrow, disgust, and anger interspersed with moments of childlike wonder, simplicity, surprise, and unexpected laughter.

In this “grind time,” as we slowly watched the death process complete its marathon course, we experienced several gospel realities as we watched, cared, prayed, and nursed our mothers to glory.

Seeing Our Brokenness in Theirs

Caregiving is a road less traveled for many people. It shows the intensity of human brokenness in acute ways. As we watched the decrepit decline in our mothers’ mental and physical state, we were overcome with moments of sadness to see people who were once so vibrant now incapable of doing the most basic things. There were streaks of anger and desperation as we cried out, “How long, O Lord, will they continue to suffer?” In these prayers, there were silent screams of desperation from both parties (us and our mothers) as we sought temporary relief from the load of this cross. Yet there was little help or assistance, as family members were hundreds of miles away.

We experienced the brokenness of defiance and denial repeatedly as one mother particularly refused to accept this condition, mentally convinced that she could work and drive a car, yet physically unable to get out of her wheelchair. Around holidays and birthdays, rejection and abandonment surfaced, especially when the “family expectations balloon” popped because distance and responsibilities prevented other family members from gathering. We felt on those days that their emotions centered on what they didn’t have, rather than what was before them. A kind of childish surrender and reliance appeared when they depended on us for spoon-feeding and for bed linen removal during their repeated bouts of incontinence. We saw and heard expressions of disgust, as they abhorred their own condition and periodically showed disdain when their expectations were unmet. There were days when I knew that I needed to be spiritual to them, yet I didn’t feel spiritual. In our drained state, we both felt overloaded, overwhelmed, and alone on an island, socially separated from the world.

Yet in those days of rapid emotion swings, mental weariness, and physical exhaustion, we realized some glorious gospel realities. We saw not only their brokenness but also our brokenness and need for cleansing and renewal. As their conditions worsened and we gathered by their bedsides for the final hours, it made me yearn for the day of wholeness and happiness when redemption accomplishes its fullest consummation for the glory of God (Rom. 8:18-25).

Seeing Opportunities in the Pain

In the “grind” days, we looked for clear-minded “windows” for substantive conversations. In those opportune times, we learned to inject words of worth, value, thankfulness, and love to them, especially when their feelings of self-worth mirrored their deterioration. Showing heartfelt appreciation for their family sacrifices, Christian testimony, and faithful service with specific examples opened doors not just to reminisce, but more importantly to reinforce the gospel’s value of their lives before their Creator-Redeemer God. Regular times of Scripture reading (by us and by the hospice-care chaplain) reinforced hope and assurance, stimulating their minds to think about their salvation and about the glorious inheritance that awaits those who rest in Christ.

On the last day of my mother’s life, we were called to her bedside early in the morning, as she knew her final hours were at hand. She asked us, “How long does it take until I die?” Knowing we had only a few precious hours, we were first able to dialogue intelligently and meaningfully with her, and then we were fortunate to reach all her grandchildren (except one serving in Afghanistan) by phone to let her say to them a personal and final goodbye. To this day, the five grandchildren remember that phone call vividly, and the sixth (in the Army) received a special word from her through me.

Seeing God’s Care in the Journey

We learned that hospice caregiving is a ministry of incarnational presence to others at a time when they desperately need it. This journey revealed a “theology of care” in showing us God’s care in the gospel, and, likewise, our often broken responses to his offers of care for us. It helped us appreciate the many men and women who work this vocation as a calling. It has galvanized us to pray for them, to encourage them, and to expose the value of their service to others. It has also sensitized us to look for and to surround church members who are currently caring for their loved ones, especially those nearing the end. In many instances, they surrender practically everything to give their loved ones the attention and care they need.

Reflecting on this journey, we feel thankful, exhausted, and fulfilled. We are thankful God gave us the grace to respond to his call, exhausted from the grinding effects of a five-year commitment, and yet fulfilled that we honored the Fifth Commandment as best we could, with Christ’s help. While we miss our mothers, we do not miss their end-of-life condition. But we do look look forward to their hope—and ours—in the inheritance of the saints.