The Natural End of Life…a Personal Journey
Today I returned from two weeks of caring for my mother in Florida as she slides towards the natural end of life. In the last two and half months I have been by her side for five weeks. It’s been hard. It’s painful to watch her dwindle, like a candle that is barely flickering, but still lit. I have had the opportunity to hold her hand at 3 a.m. in the morning, as she lay in her hospital bed at home, short of breath, frightened, waiting for the liquid morphine to work that I dropped under her tongue. I have been able to give her comfort in this final chapter of her life. I have been able to tell her how much I love her. And I have been able to reassure her that our family will be okay after she leaves us. Other family members have taken my place for the next three weeks, if she is still with us.
I am waiting for the telephone call, which will come soon.
Many of us have been through this difficult passage — with our mothers, fathers, brothers, sisters, husbands, wives and friends. Many of us will experience this life chapter in the future. As caretakers, we find ourselves pulled in two directions. On the one hand, we imagine some sort of miracle, a recovery or even, just a better day. We search for signs of improvement—better color, less labored breathing, more energy, or even a bit more appetite. These signs lift our spirits and ignite our best friend and worst enemy—hope. On the other hand, we wish for our collective suffering to end. When will she breathe out, but not in? The “angel of death” will visit us all, but not by appointment.
It is always amazing to health care providers how human beings can cling to life, even when there seems to be no objective capacity for it–like moss that grows on a sheer rock face, its roots drawing nutrients from just a few grains of earth and a few drops of water. This is why predictions about end of life are often wrong. Over these last two weeks, I have been sure on several occasions, siting by her bed, that this would be her last night. She seemed so close to the end. But by some miracle, the next morning, she would open her eyes, and live one more day.
It’s also astonishing to me how human beings are able to adapt to gradual change. When I was with my mother, just six weeks ago, she was able to eat with her friends in the communal dining room in her independent living center. This was all she could manage, but it was a huge victory for her. But over six weeks, she lost the ability to walk, even with a walker. She is now entirely bed and chair bound, even standing up with assistance exhausts her. Yet she can draw pleasure from watching a funny television show, a telephone call from a beloved grandchild, or listening to a poem. On several occasions we were able to wheel her outside, to sit in the warm Florida air, feeling the breeze against her cheek, and listen to the birds overhead. She smiled. This ethereal idea of “quality of life” changes with our ability to function. Even a squeeze of a hand can draw a few drops of love into this container we call “life”.
There are many challenges for families. In our case, my mother lives thousands of miles from her sons, step-daughters, and grandchildren! Not every relative is able to spend much time with her. Can we have a family member there continuously or must we rely on home health aides?
Everyone’s circumstances are different. Many of her grandchildren have young children that need their care. Some family members are better suited for this assignment than others. It can be easy for family members to feel resentful that they are the primary caregivers, just because they live closer, have more available time, have a job that enables them to take time off, or are simply willing to help.
Let it go. Everyone is different. If you are able to provide end of life support, you are the lucky one and you will not regret the time spent by your loved one’s side.