Hospice of the Comforter

Caregiving During the Holidays: Give the Gift of Self-Care

     The stresses of caring for a loved one with a life-threatening or chronic illness are well-documented. Caregivers report anxiety, feelings of helplessness, hopelessness and frustration, bouts of depression and constant fatigue. They are more at risk for physical illnesses than others their age. Financial strains may add to the burdens, as caregivers stop working or try to keep working while dealing with many absences and lost productivity.

Add to these usual burdens the extra demands of the holidays, and caregivers often express the wish that they could skip over November and December to avoid all the fuss!

     Also, the holidays can raise a storm of unexpected emotions within us. They are expected to be times of joy, generosity and spiritual uplifting, but when we go through the holidays during a loved one’s serious illness they can be fraught with reminders of all we have lost and may lose.

     How can we participate in the holiday traditions and rituals that renew our spirits and enhance our connectedness to the important people in our lives without adding to the constant demands that our loved ones illness places upon us? The answer is a careful and intentional decision-making process whereby we choose holiday activities that we truly enjoy, and without which, it just wouldn’t feel authentic.

     The holidays are often a time where we communicate with and update friends and family who aren’t part of our everyday life. To have to write the news of you and your loved one’s struggles over and over could be emotionally draining. If you are able, write your update once and then e-mail it or copy it to send out. And if doing it even one time feels too painful, ask a friend or family member who’s familiar with what’s been going on to do this for you.

     For those who can’t visit your loved one during the holidays, set up times when they can have free access to your answering machine to leave messages that can be re-played for the ill person. An ongoing way of communicating long distance is a free web service called Caring Bridge which helps keep loved ones informed during difficult times. In return, family and friends give patient and caregiver support through guestbook messages.

     People may want to make a special effort to visit your loved one, especially if they think this may be their final holiday season. While this may be very meaningful and desired, it can sometimes create havoc with the effective caregiving system you have set-up. We need to talk ahead of time with the rest of the family about what’s different about this year.

     Dr. David Coon of Arizona State University suggests if you have friends and family visiting who haven’t seen the recent changes in your loved one’s condition, they should be given a written or verbal heads-up on what to expect so they can come with realistic expectations.

Keep in mind your own energy level and your loved one’s limitations. These should take priority over visitors’ wants and desires or the usual holiday disruptions of our schedules and environments.

     At the same time, feel free to share some of the caregiving burden with those visitors who are usually out of the loop once they are properly prepared.

     Dr. Coon also advises avoiding the “if we can’t do it the way we have in the past, let’s not do it at all” mindset. Just as you have made many adaptations in your everyday life to accommodate your loved one’s needs, so we must be flexible in what will most easily create a fulfilling holiday experience during a time of illness and loss.

     It is important to determine what you really want from the holidays: increased connections, beauty, escape, spiritual transcendence? You can begin by examining your usual holiday traditions and duties, deciding which you most like doing or those without which the holiday would seem incomplete and then give yourself the blessing to let the rest go this year. The chart at the end of this entry is a tool you can use to determine what you still want to include this year, which of those items you want to handle yourself, and which you can delegate to others.

     And there’s nothing to stop us from adding a new and meaningful piece this year. I knew a family that during their father’s last Christmas created a large mural where everyone in the family from youngest to oldest, placed their handprints with a message of gratitude to their loved one. Afterward the teenagers in the family filled in a beautiful background, and this hung across from his bed for the remainder of his life.

     This is a year to consider forgoing material gifts, or make gift-giving as simple as possible with gift cards or shopping online.

But one person I do not want you to forget to give some gifts to is yourself!

     Ask for respite, cleaning, meals delivered or gift certificates to your favorite take-out, yardwork, IOU’s for running errands or shopping, a spa day or massage certificate…anything that comforts or rejuvenates you. Remember the greatest gift you can give your loved one is a "YOU" that is able to respond to and prioritize their needs while remaining well, sane and mostly positive. May your holidays be blessed with compassionate and helpful people, beauty, meaning, and a lifting of your spirit.

Holiday Stress Assessment for Caregivers
By Michael Plontz

     We can feel the stress lurking around the corner. We may not know what form it will take or how much of it we will have to endure, but we know that it’s out there waiting. Wouldn’t it be nice to evaluate the amount of stress we can handle as caregivers during the holidays? Well, now we can.

    This chart (PDF) may help you to decide which things you must continue through the holidays, and which ones you can let go. It is reprinted here from sids-network.org.

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