Note: If you have just suffered the loss of a loved one, you might want to pass on this one, or it might help. If you are caring for a loved one and have wondered about hospice and end-of-life issues, then this might be informative.
Once my sister and I decided that 89-year-old mother’s dementia had reached the point where she could no longer live alone, we toured a number of “board and care” homes and found a comfortable place for her to live, surrounded by caring and competent attendants. The home was only three miles from my house so I could visit daily and make sure she got to her doctor visits or quickly attend to any emergencies. We both recognized the inevitability of her decline, and we stuck to the mantra, “We just want her to be comfortable.”
My sister was always a great source of support and comfort to me, but once she returned to her home in Maui, the burden of decision making, finances, and the occasional all-nighter in the emergency room fell to me.
That period of my life stretched out over the past three years. I had a front row seat in watching my mom slowly lose more and more of herself, and I struggled with the constant responsibility of living up to what I thought it meant to be a “good son” when I quietly knew, I really wanted it all to be over.
I thought I was prepared, but it all happened so fast. I got a call from the home telling me mom wasn’t breathing well, and we got her into the doctor who diagnosed her with pneumonia and gave her some new meds. The pneumonia persisted, and I finally made the call that it was time to seek out hospice care.
When you sign up a loved one for hospice the first thing that the glossy brochure will tell you is that “you are not giving up, not throwing in the towel” because, in fact, that is exactly what it feels like. But as my orientation went on, it became clear that this service would provide exactly what my sister and I had promised ourselves we would do—keep mom comfortable. She would get in-home care, around the clock if necessary—no more exhausting doctor visits or runs to the emergency room. And most importantly, they said, “we won’t do anything without your approval and consent.”
I started her on hospice services on Friday, June 5 and she passed away on Friday, June 12.
There is no doubt in my mind that I made the right decision and that I had placed her in the hands of caring professionals, but it also was a week full of awful decisions for me, all of which were papered over with words like “letting nature take its course” and “keeping your mother comfortable.” What all of these decisions really amounted to was my being complicit in, being responsible for aiding in the process that would end with my mother’s passing.
It began with being presented with a list of medications that they wanted to take her off of because they no longer were necessary to keep her comfortable or prolong her life. By this time my mom had drifted into a semi-conscious state and it was becoming more and more clear to me how near we were to the end. The most wrenching decision for me was when they asked me to agree to stop feeding her. The danger of her choking was now so great because of her state of awareness that it was time to begin withholding food.
I had to go deep inside of myself to be able to say yes to this. I had to remind myself that my mother was never, ever going to get better, that her immune system was so compromised that there was nothing to be done, that I had sworn to keep her peaceful and comfortable to the end.
After that, it was just a couple of phone calls asking if it was OK to up her morphine. By then, I had conceded to the inevitable—that she would, in fact, never wake up again.
I went over to the home on that Friday evening, planning on spending the night, but knowing that her time was short. Before midnight the nurse called out to me and I stood at her bedside, trying to say something comforting, feeling a little bit numb, and watched her drift off.
I had been able to accomplish exactly what I had told myself I had wanted for her. She died in a home-like environment, without pain or dramatic and useless interventions. But as I drove home around 1 AM, it was so much less than what I had thought it would be. It was a comfortable, unremarkable death that left me feeling both hollow and relieved.