caring for loved ones

Caring for Loved Ones at the End of Life

We have had two family members living with us supported by in-home hospice care. It is a deeply moving experience that combines the undying, heartfelt love of members of the family with the competence of caring providers in a setting that is comfortable and safe.

We need to rethink the role of skilled nursing facilities in our society when it comes to the end of life. Although they do play an important role, and often are the right choice, as someone nears the end of this life, in-home hospice is a more humane alternative. It is neither the quality of care nor the devotion of professionals that work in these facilities that are in question. It is the nature of the institution. By necessity, a skilled nursing facility must protect itself and its interests—whether they are financial or legal. And thus it is primarily focused on competently managing care. It is not capable of affirming or deeply valuing those in its care through expressions of love and individualized attention.

We recently moved my wife’s mother to our home from a skilled nursing facility that was costing, on average, $5,000 per month. This didn’t include companion care, which would have doubled the price. While in the facility, she was on a regimen of pharmaceuticals, but her health was deteriorating. There were a constant stream of conversations with providers at all hours of the day, and she had fallen out of bed twice in recent months and had unexplained bruises.

When my wife first broached the subject of whether her mother should move in with us, I wondered: Could we handle the extra responsibility? Could we care for both her and our son who has severe disabilities and is fully dependent on us for all his care? Could our thirteen-year-old daughter emotionally cope with seeing her grandmother deteriorate and die? My response surprised me. I felt this overwhelming sense of… well, the best way I can describe it is, doing the right thing. In that moment, it was obvious.

The morning after my wife’s mother arrived in our home, as my wife was tending to her she said, “I want to be first.” In the assisted nursing facility she was on a list and had to wait her turn. Being an early riser, this was painful to her. My wife’s response was, you don’t have to worry about that anymore. You are here with your family and grandchildren. We will take care of you.

EdelweissIn our home, she was embraced with respect, kindness, and attention to the details that imbue her life with meaning. My wife slept on a bed in her room, taking care of most of her personal needs; and together we positioned her, helped her in and out of bed, and took her for walks. Hospice provided medical support and personal aides to help with her bathing.

Caring does take time and one does lose sleep. But the richness of the connection, the ability to be alive in each moment—which is all we really have anyway—far outweighs the challenges and stress of the responsibility.

In-home hospice care is not the right solution for everyone. But end of life care options need more public conversation. It is all about plumbing the depths of our humanity, our ability to relinquish the strivings that often define our daily existence and to be present in each moment—physically, mentally, and emotionally. The payoff of in-home end-of-life care is counterintuitive and surprisingly rich.

Last Saturday afternoon, while my wife told her mom about all of those who love her, and sang Edelweiss to her, she made her transition from this life… with dignity, respect, and immersed in love.

AUTHOR - James Mueller

Jim Mueller is president of James Mueller & Associates LLC (JMA), a national consulting firm that provides services in the areas of organizational development, governance, and philanthropy. Follow Jim on LinkedIn.