I recently resigned my part-time hospice social worker gig. It was bittersweet, but necessary. I’m not as young as I used to be (no kidding; who is?). I came to recognize the signs that working a full-time job, plus doing my best for hospice patients and their families in my “moonlighting” flex time job, was taking its toll in more than one way. I wasn’t sleeping well. My stress level was escalating. My focus was segmented in too many directions. I was missing much needed down time to rejuvenate and renew myself. I needed more free time for the “little” things: spending time with Jim, staying in touch with my son, playing with our cats, reading a good book on a snowy weekend afternoon, having meals with friends, etc.
But my heart will always be with hospice and fortunately (yes, fortunately) I can continue my hospice social work with residents and families in long term care. Hospice care is a blessing for many families. This PBS article helps explain why. Please take a few minutes to read it.
The gist of the article is the point of my blog. We’ve seen it all too often with our own family members, our patients and my residents & their families. Those of us who work in hospice hear it all the time: “I wish we’d started hospice sooner for Mom.” I have never heard anyone say “Dad was on hospice too long.” Part of the problem, I think, is that the word hospice still connotes “immediate death” for some people. The PBS article states: “People often wait too long before seeking hospice care. In the United States, the average length of hospice care is less than 60 days with 30 percent of those who elect hospice care dying in seven days or fewer.”
It’s difficult for some to embrace the hospice concept and so they wait to enroll their loved one. Or they wait to have a conversation with a healthcare provider about hospice (or the healthcare provider waits too long to initiate). When my Mom’s doctor told us – “There’s nothing more we can do. Your disease is end stage. It’s time for hospice.” – neither she nor I had ever heard of hospice. There has been much more about hospice in mainstream media since Mom died in 1998 (on her 7th day of hospice care). I often say I wish we’d known about it sooner. And not just for my Mom’s sake, but for mine and that of my then-13-year-old son.
There was so much support that we did not have time to fully engage. Now I know that there was a social worker and a chaplain available to us for resource, emotional and spiritual support. There were volunteers who could have come into our house to sit with Mom while I took my son to his baseball games (instead of me leaving her alone and then sitting anxiously by my bag phone – it was 1998 – awaiting it’s ring telling me she needed help.) There were people who could help other family members come to terms with the situation. The nurses we met were great; the aides were invaluable to me since I was uncomfortable with bathing my Mom.
Let me stop there to drive home a point: I recognized that there was something I just could NOT bring myself to do. With hospice, there was someone I could call to help us. She didn’t mind that I couldn’t bathe her and she was grateful for the aide who could. And I wasn’t then (nor am I now) ashamed to admit that I could not do this one thing for my dying mother. I could empty/clean her bedside commode. I could clean up other bodily fluids that she would expel given her COPD. I could feed her, wash her clothes, reposition her in the bed, entertain her, listen to her, and spend time with her. But there are reasons that certain people are CNAs and others are social workers (or plumbers, or policemen, or truck drivers, etc.). Each job has demands that the other may not be comfortable doing. My mom knew I wasn’t able to bathe her because we talked about it before we knew her disease had become “end stage”. And I didn’t have any guilt about not bathing Mom because we’d talked about it and there were others who could help us with that.
And there’s the point. We talked. Even before the doctor’s proclamation that there was nothing more to be done, we had talked. We didn’t wait. We continued to talk throughout the next 9 nine days until the morning Mom died. And there was a lot more to be done. Our final conversation, just hours before her last breath, was about her funeral scriptures and songs. Until the very end, Mom wanted to be sure I knew what she wanted.
So, don’t wait. Start a conversation with people you love. It doesn’t have to be a lengthy discussion initially. Just ask your kids who would be comfortable giving you a bath in your last days. You’ll be amazed what conversations follow that!
Caring Choices understands that each of us is designed to do certain things more comfortably then others. Recognize your strengths and abilities and then lend them to care for someone you love. Don’t wait too long. Better yet, don’t wait at all. Talk. Share. Love.
© 2015 Caring Choices