There's no way to sugar coat how hard it is waiting for someone we love to die. The last stages of life, when a person we love is slowly slipping away from us, are as close to unbearable as an experience can be. They're also exhausting; it's a huge job to take care of someone at any time, but watching someone we love grapple with pain and grow weaker with every passing day takes a special kind of toll.
Reading a moving thread on this topic in the Caring.com community, I was reminded again of the many times Caring.com members have praised hospice services. And the many times I've heard people say (or said myself) that once they experienced the relief of having help from hospice, they wished they'd asked for hospice help much sooner.
Give Yourself the Gift of Hospice Help
Recently I saw a Brown University study that said that one in ten hospice patients is referred too late, with not enough time left to provide the services that hospice could have offered. It seems, the experts said, that the majority of people aren't getting clear instruction on when to call in hospice. It made me sad, because I'm among those that this happened to. So I thought I'd talk honestly about hospice, and what a gift to the caregiver calling hospice can be.
When my Dad was at the end of his battle with esophageal cancer, my stepmother, my sisters, and I talked about hospice a couple of times, but we didn't make the call. I think we just couldn't believe everything was happening so fast -- we couldn't grasp the finality of it. It felt like defeat; like we'd given up fighting to hold on to him. And the doctors, despite having given my dad a "terminal diagnosis," didn't actively refer us to hospice; I guess they were waiting for us to ask.
It wasn't until Daddy was no longer speaking, and we felt complete panic about what to do, that we made the call. When the hospice nurses arrived with their arsenal of pain medications and other powerful treatments, they sat us down and told us they thought my dad had just days left. Then, gently and with great insight, they offered some thoughts about what the last days would bring. It was terribly painful, and we all wept.
But I also remember the wave of relief that swept over us. Suddenly here was someone who understood, who knew what has happening, who could tell us what to expect. Who, when Daddy groaned and cried out in his sleep, could give him something to help him rest easier.
There was one thing my Dad was doing that particularly worried us. He would suddenly open his eyes and start talking or calling out, looking off into the distance. Sitting next to him when that happened was frightening. Was he seeing things? Was the cancer in his brain, making him crazy? Was he frightened about what was happening to him?
Kindly, the hospice nurses told us that this behavior was common at the end of life -- they'd seen it many, many times. While no one could know exactly what was in Daddy's mind, they said, it was likely he was getting ready to go, possibly even greeting those he'd said goodbye to in his own life. Sometimes, they said, in a person's last days, those who'd gone before suddenly became very real for them.
Of course, we'll never know about something like this until it's our turn. But I know I felt much better and more at ease. Having someone to ask questions of, someone to call on when in doubt made those last days of caregiving a completely different experience. Freed from complete responsibility for every decision, we could focus on making Daddy comfortable and saying our own goodbyes.
That was the ultimate gift. One I hope you can give yourself.