End-Stage Support: A Modern Guide for Home Nursing

It's the dawn of 2008 and the technology is here. Whether by cell, computer, or traditional land line, you can connect with virtually anyone on the Planet Earth, any time of the day or night. So why do we hesitate to call our dearest friend or relative? A person who is dying of cancer, very eldery and not expected to live, or confined to a nursing home needs personal contact, needs your phone call. Do it today, while they can still talk to you. Make the call, and have the memory of their voice at hand. Avoid the guilt, enjoy the call, and make that call for both of you!

Everyone's been there, whether a young college student, serving overseas in the US Armed Forces, a busy mother, "Yuppie" professionals driven by career demands, or a senior citizen. Your friend, cousin or even a parent is dying, and there's no way you can travel to be with them. Unsure and afraid, the procrastination is making you crazy! Whether the call is destined for a nursing facility, a private home with hospice, or an adult care facility (ACF), these calls SHOULD be made. Do the job right, and do it often! You'll feel better later on. This entire process gets less painful with practice. The patient and their caregivers will be forever grateful for the generous donation of time and empathy. Here's a guide for that difficult-to-make telephone call.

1. Meditate and prepare for the upcoming call. Understand that most patients like to talk, and it breaks up a boring and very painful stage of their life. They need to talk, even if there's very little to say. The patient knows they have a limited time left. If you only call once in a Blue Moon, the patient is more likely to do everything in their power to keep you on the line as long as possible. Once again, the guilt increases.

2. Make an initial contact with a care-giver, the ACF home, or a charge nurse. Coordinate the time and length of the call, and establish a routine. Think of shoveling your side walk, mowing the lawn, or emptying a cat box. Complete the chore frequently, and it's relatively easy. After a few brief moments, your walk is clean, your yard looks great or your cat is happy! Wait for a month, and you'll end angry, the chore will take longer, your neighbors hate you, and the house stinks! You feel guilty that you let it go so long.
a. When calling or visiting the terminally ill, Sundays, weekends, and holidays (in general) may be the best times to call. Non-working days tend to be quieter, with nurses and caregivers quiet at home.
b. Try to pick a time when your call won't interfere with a visiting nurse, technicians, appointments, or hospital rounds.
c. (Example) A dear friend's mother has no phone in her room, and needs her hearing aids in to talk. After dinner, Mother and Son's time is generally scheduled for 7:30-8:00 pm, when "Mom" is done with dinner and preparing for bed. She (hopefully) inserts her hearing aids, wheels herself down to the nurses station, and phones home. A nurse can assist the patient with these situations.
d. Sometimes it's best for the patient to make the call, but be sure to find a mutually convenient time and date.

3. Have a plan for your call. If it helps, pretend you're the King of Spain or the Queen of England. Most businessmen, working people, students, and housewives have a schedule. William Wales, the President of the United States, Brett Farve and Larry King all have families, but they're challenged by the same time constraints and schedules we all maintain. These "celebrities" also employ call screeners, secretaries, and press agents to help run interference and maintain their routines. As a private citizen, you have your natural intellect, wit, and maybe even a small amount of deceit. Consider enlisting the help of the caregiver and nursing staff to limit the length of the call.
a. Establish the length of your phone call. Twenty minutes is more than adequate. Most patients, when they're dying and in Hospice Care, are very fragile -- even a phone call weakens the individual. Have a timer or clock or some sort of time measuring device. When you approach three fourths of the way through (15 minutes for a 20 minute call,) begin ending the conversation. "We're on the way to golf, can't miss our tee time" comes to mind, even though I've never golfed. A neighbor's dinner starts and I can't be late. "My spouse (boyfriend, girlfriend, room-mate) and I are on the way out, we have this big dinner downtown planned..." You should end your calls saying, "I'll tell you all about it next Sunday when I call." (Please keep your word and call when you say you'll call!)
b. Have a partner. Your roommate, partner, or spouse will do in lieu of a helpful neighbor. At the 20 minute point, if you give the signal, have them interrupt and ask you to leave. Do not allow them on the phone! Pick a stranger if you must, but use your most convenient resources. Most people are willing to help out and might even enjoy a bit of role-playing.
c. Use subterfuge. "The battery of my phone is dying!" This works exceptionally well when a flood of water cascades noisily into the nearby sink. Rattle some papers and hold your voice away from the phone, saying (as you fade out,) "We'll call you back next Sunday!!! My battery is going."
d. Ring your own doorbell and say it's the neighborhood cookie drive or school fundraiser and you have to go. Don't forget, "Will call back next week, so sorry!"
e. Have a friend call in at a certain time to activate your call waiting features. On the other end of the connection, the caller hears moments of silence. Simply explain that someone is trying to call in and you need to take the call.

4. Pretend it's a news briefing or ask questions to steer her away from body functions. It's a fact of life that older people and dying patients discuss their illnesses in detail. Most folks hate to talk about body eliminations, lung discharges, and painful aspects of illnesses. Please understand that's ALL that's going on in their world. It's the only news that most of the patients have to offer. For the rest of us, it can induce nausea and dread of the phone call. Divert, interrupt, or talk about your own news. This is one time it's good to be rude...get the patient's mind off the topic!
a. Ask an obscure question on a subject of interest. Make notecards filled with diversion questions and segways. Tell a story or interrupt to ask if the patient remembers back when they worked at whatever company. Or ask about THEIR parents or grandparents. What do they remember about the old days? If a person is in their 80's, they should have some recollection about World War II, Pearl Harbor, and the Atom Bomb. Tell a story about a mutual friend or relative and ask if they remember that person?
b. Often, older folks like to hear stories about children, so if you are the son or granddaughter calling, try talking about a young cousin or some other mutual friend or relative.
c. (Example) Ask about the old family farm or their first apartment, when your friend or relative was newly married. The minute they talk about elimination issues, aches, and pain, divert them to a more mutually pleasant discussion.
d. If you can't successfully change the subject, be honest and straight forward. Tell them you can't bear to talk about it, because you'll vomit. Otherwise, try using the ploy that the care giver or hospice nurse or social worker told you that it would be better for both of you if the discussion steered away from health issues. Tell them straight out, for your own health and theirs, elimination topics must be in the form of football or baseball playoff berths.
e. Dig up a self-help book or quotation books and focus in on a random quote or idea for your call. Keep calls relatively short and sweet. If all else fails, find an annoying buzzer and tell the patient that your phone is malfunctioning or you must attend to the smoke alarm...they do not have an eye into your household!

5. Make up more notecards about your travel, job, kids, grandkids and the various spouses of relatives. Interject a family story and say that you have to get it out right now or you'll forget. Any humorous anecdote is worth telling. Note cards can be used over and over again, and expanded on. If you prefer, create the data on your PC, and bring up the information on a computer screen located near your phone. Stephen King used notecards (although he upgraded to word processors years ago) in order to track the characters described in many of his novels. Look at all the money he's made with that system!

6. Plan calls during family get-togethers, and work out a "hand-off" so each relative or mutual acquaintance can talk for about 5 minutes. Even during holiday calls, try to keep them limited to about a half hour at the maximum.

7. Ending your call. Know that it's in the patient's best interest (as well as your own) to keep conversations to a 15-25/30 minute maximum. Fifteen or twenty minutes are usually very workable for all parties concerned. Research books and guides for visiting critically ill and terminal patients in the hospital. Experts suggest brevity, frequency, and uplifting topics of conversation.

These calls should not be so big of a chore as they are...but they mean a world of good to the patient and their caregivers. Call on a weekly basis, at the same time. When the individual can rely on the fact that you're going to call back next week, they are more likely to allow you to hang up. I have my own exit strategy and it works most of the time. Rude as it sounds, I just say the phone is ringing or someone is at the door. I'm the care-giver, stuck at home! Normally, our big Black Lab-Great Dane mixed breed dog saves me. He barks, almost as if on cue, so I can finish mopping the kitchen, laundry, or doing dishes.

Now there's another possibility ... get recordings of a dog barking. You can play it and say that someone left you a dog-sitting chore & you have to take it out before it leaves a surprise on your carpet. Good luck, make that call, and call often. You'll get better with practice and it is the best gift you can offer a terminally ill patient, a few moments of your time.

This article was written in response to a specific set of incidents, centering around hospice and terminally ill patient care. A particular individual, extremely important to a "client," avoids calling on a regular basis. The last time he telephoned, his mother kept him on the phone for well over two hours, mainly describing (in graphic detail) her most horrendous bowel movements and the resultant clean-up. This man has an extremely weak stomach. Her view and his perspective of the very same phone call are completely different. To her, the call was the highlight of her entire year, she sincerely believes that her son really enjoyed all of her stories, and they had such a great conversation! To paraphrase the son, it was about the very worst a phone call could possibly be--the physical challenges involved in her illness make him sick.

I sincerely hope this guide will help people reestablish successful contact with a friend or relative in the later stages of life. When I say successful contact, I'm hoping that your visits (whether in person or by telephone) can be happy ones, where both parties come away refreshed and willing to talk again next week.