The day before her 91st birthday in early September, 2017, my sweet mama-in-law, Monta, moved into our home so we could provide personal hospice care. The past few weeks have had some very rough spots, but we’ve also had time to visit face-to-face with family in person and via internet, to share stories and memories, to watch hummingbirds and butterflies while sitting on our front screen porch, and to enjoy anticipating the birth of Monta’s next great-grandchild in several weeks. I had the privilege about ten years ago of spending some months providing hospice care for my own mom in her home in San Antonio before her death. Both my mom and mom-in-law would want people – whether friends, family, or hospice personnel – to take to heart these five key “do and don’t” tips from their viewpoints inside hospice.
TIP #1. Do not speak in hushed tones.
My mom would say, “Hospice is NOT a process of waiting to die. Instead, my pancreatic cancer alerted me to the fact my days were numbered, so I chose to live each of those days to the fullest.” Keep in mind a person in hospice does not typically lose their interests upon becoming ill, so do what you can to help them stay connected to their “regular” life. For example, several days ago, a new hospice nurse greeted Monta quietly and asked in rather somber, hushed tones how she was feeling. Monta looked up with a spark in her eyes and said, “I’ll be feeling fine if the Dallas Cowboys get their act together and win their Monday Night Football game tonight!” Both Monta and my mom, Nancy, knew for a fact their time on earth was limited, but, let’s face it, ALL our days are numbered.
Tip #2. Do respect my dignity.
Please, please, please be discreet in your talk about diapers, catheters, body parts & processes, and other private matters. Please make certain doors are closed when I’m bathing, toileting, or involved in other personal activities. Please be thoughtful about what you say to others about me or about my medical issues, personal issues, or other issues arising during this phase of my life. Especially do not talk to anyone about these matters when in my presence – talking as if I am not in the room. I understand hospice staff must report observations and my conditions to supervisors, but please follow professional ethical privacy protocol.
Tip #3. Do talk about something other than medical issues.
Please do not identify me by my terminal condition. I am a real person who has led a full and interesting life. If I am able to talk and want to have a conversation, take a minute each time you see me to ask about my travels, family, career, hobbies, and more. And please feel free to tell me a bit about your life or an interesting or funny recent experience, whether I can respond or not.
Tip #4. Do take time to gather stories and share memories.
Attention family members – Take time to look at pictures & momentos, ask me questions about family events over the years, share some of your favorite memories with me, and ask about our family history. These don’t need to be “novel-worthy” events. It is interesting just to see what a person’s typical day was like when they were in second grade, or to listen to a person talk about their first date, their professional aspirations when in high school, their experiences at summer camp, or their memories of their grandparents.
Tip #5. Do talk TO me.
Monta & Nancy would both say this: “Even if it seems as if I am not at all aware of your presence, please greet me when you come into the room. If I am in a wheelchair or bed, please pull up a chair or squat down and get on my level to talk to me so I’m able to look at your face instead of at your waist line. If you ask me a question, ask me to make a choice, or ask my opinion, please take time for me to answer. Just stop, look at me, and wait. No need to fill all the silences or to answer questions for me. And, finally, don’t talk about me to others as if I am not there. (hmmm….this point was already stated Tip #2, but it bears repeating.)”
I feel certain these two ladies, my mom Nancy and my mom-in-law Monta, could write a book about their personal experiences in hospice and their key tips for family and other caretakers, but we will stop with these five hints for helping a family member, friend, or client walk through this pivotal time in life. Please feel free to send other ideas based on your experiences related to hospice for family or personal experiences. <CathyKnoll@MusicWorksPublications.com.