As much as we appreciate cards, calls and visits from friends and family, during or following medical care, some appendix cancer patients and their families feel overwhelmed when hospital and home visits are “overextended.”
This week I received an inquiry from a caregiving “Pal” who expressed the following concerns:
“My husband is recuperating from CRS and HIPEC, and returned home, from the hospital, last week. A visiting nurse comes by to change his bandage each morning.
My husband needs to take a long nap every afternoon. Several neighbors, relatives and co-workers have stopped by to visit unannounced. I feel uncomfortable asking them to call first or to limit their visits. My husband almost feels obligated to answer all calls and accept “drop in” visitors. He is clearly fatigued yet feels we must “entertain” friends and family.
I am running short on patience and wonder how other spouses manage balancing caregiving while setting limits for visitors.”
In response, I share the following suggestions for enjoying visits from friends and family while setting boundaries to respect your personal “space.”
Hospital and home visits:
Set limits for your own, or for your spouse’s visiting hours in the hospital and at home. Limit the number of visitors you, or your spouse will receive and during which days and hours. Tell friends and family “John is awake for visitors on Sunday, Tuesday and Thursday from 1 to 2 PM. He requires the remainder of the day for rest and medical care.”
Advise the nurses at the call desk of your preference for visiting hours. Visitors don’t always check in at the call desk, therefore, you will also need to post a handwritten sign on the door to your room, advising everyone of your personal visiting hours.
Don’t assume that “other cancer patients” who may visit you, will be perceptive of your energy limitations; they will not be.
Many well meaning and caring friends and relatives have NO concept of how tired post op CRS and HIPEC patients are, what they have experienced in the hospital, the amount of uninterrupted time that patients need to bathe, change dressings, attend to “bathroom needs” (which are generally more frequent during the weeks immediately following surgery) the time required to eat and consume nutritious foods, or to administer TPN and change bandages without having the
Gifts for patients:
Likewise, visitors may be unaware of appropriate gifts for recuperating appendix cancer patients.
Many gastrointestinal cancer patients experience nausea, especially following HIPEC or other chemotherapy treatment(s.) Therefore, when selecting floral arrangements, visitors should select non fragrant flowers, i.e. tulips or cyclamens, or non flowering plants.
Thoughtful gifts include music selections, light hearted films and DVDs, crossword puzzles, magazines and books.
Whether patients are recuperating in the hospital, or have returned home, they, and their family caregiver, will appreciate gifts of an hour or two of housekeeping services, laundry/dry cleaning, grocery shopping, transportation to medical appointments, extended childcare, gift cards, prepared meals, comfy lounging apparel, care and shelter of pets, etc.
Visitors should limit wearing, or giving, gifts of fragrances, scented lotions, and perfumes. Patients may easily become nauseated from aromatic food or beverages, including coffee, therefore, visitors should limit their own refreshments to the hospital cafeteria or coffee shop.
Post an outgoing message on your cell or home voicemail advising friends of your “telephone hours.” Tell friends and family that you welcome their incoming calls during specific hours of the day and for brief durations of time. Here is a suggestion for your voicemail message:
“Thank you for calling. Please call back between 2 and 4 PM. During my recuperation I am limiting calls to ten minutes per caller.”
Create a “visiting policy” that works for you:
Patients and their family caregivers can sit down together and discuss their own needs for setting limits for visitors. Friends and family will never know your personal preferences unless you tell them your wishes!
For more articles on this topic, visit www.pmppals.org
Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their family caregivers and are not intended as substitutes for licensed, professional legal or medical advice. Each case is unique; therefore, patients should seek their own professional medical counsel. Copyright © 2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org We have HOPE for YOU!