A Message for Caregivers
by Maryann Schacht, LCSW, BCD
The holidays approach again. When illness is a houseguest, it may seem hard to feel festive and be "of good cheer." But you and the person you care for can find new and more meaningful ways to enjoy this holiday season.
Many caregivers attempt to carry on as if the elephant of illness was not squatting in the living room. You pretend nothing has changed, but the big elephant keeps on trumpeting. You wake up exhausted and fall asleep dissatisfied. The person you're caring for might not feel like celebrating this year.
Often caregivers and receivers adopt a stoic stance. Friends come by, pat you on the back, and admire the loving personas on display. Their attitudes reinforce the role-playing, so you stifle feelings and attempt to carry on. This is nonproductive behavior. You short-change yourself when you smile and chat about the weather. Covering up reality drains energy. Sharing can be restorative.
Ask for Help
It isn't unusual (particularly this time of year) to find yourself face-to-face with the specter of envy.
"How come other folks have it so easy? How can they talk about fashions while I'm dealing with feeding tubes?" The kid in you cries out, "I want to go to the party." You can do it.
Don't be afraid to ask for help. Everyone feels better when they're allowed to be useful. Give your family and friends the chance to help. Accept the gifts of caring. Relax that stiff upper lip. Consider this an ADGE (another darn growing experience.)
Give Yourself a Break
If the person you care for wants to stay home when you want to go out, allow that choice graciously. You can give yourself permission to take care of yourself and make arrangements to leave him or her in competent hands. It is ok not to be the caregiver every minute and every hour of the day. A family member, neighbor, or other volunteer could enjoy the chance to watch an adventure film or play a game of cards. Shifts in routine can provide great relief. It is always important to take breaks, especially during the holidays. You will come back refreshed after enjoying the goodies, the punch, and, above all, the conversation.
When you force yourself to stay home, you have to deal with the deprivation. If you aren't clear about leaving, you have to confront guilt. When you're stuck in indecision, feelings of helplessness multiply. "Ought" and "Should" are extremely powerful. Too many people let overbearing super-egos govern their actions. Think it through, talk it over together, and take care of both of you. You are both entitled to time away from each other. Much as you love each other, you do have your own life story.
The Gift of Honesty
It takes courage to be a caregiver and bravery to keep a relationship honest. When you acknowledge your feelings and choose either to act or not to act on them, you get to live in the moment. You take charge.
Trying to prove your competence too easily slips into becoming directive and demanding. Talk to your partner. Reach for the bond that exists between you. Let each other know you are in this together. You regain your power to choose every time you acknowledge reality.
You might decide to have your own private party. Focus on making it a beautiful party. Create a special bond through memory. Remember that nurturing means listening to what a patient wants, not insisting on what you want him or her to want.
A New Etiquette
The invitations pile up and the person you care for may want to go to some special events. Don't let fears or uncertainty hold him back. Help her to make peace with the fact that it's fine not to eat what everyone else piles on their plates. What people choose to eat doesn't matter as much as the pleasure of their company. True friends will see him for who he really is and accept external changes. The patient is the same inside as she was before the illness. Cancer does not define anyone! Patients are who they are. The more comfortable you both become with that reality, the more others can grow to understand it. Worrying about what people are saying or thinking about you puts unnecessary stones in your path. Kick those rocks away. Remember that whatever anyone else thinks is their problem, not yours.
There's More to Love than Food
The idea that conversation is richer when it happens at the table starts in childhood. So many holiday traditions revolve around food. A "good" hostess offers her guests canapés and a drink of some kind. A "good" guest says, "Thank you, this is delicious," even when the hot chili explodes his taste buds. It is only natural that a "good' caregiver wants to use food as a way to say, "I love you." When the patient doesn't respond to that, your pushing food becomes an irritant rather than an expression of loving concern. Hard as it feels to accept, patients know what they need. He or she may not be able to eat the food you spend hours preparing. When he can't swallow it, let him be. Let go. Let it be. It doesn't spell failure if that wonderful chocolate shake enriched with an egg doesn't taste good to her.
Remind yourself that it isn't about the eating or drinking. It is about caring.
People advise caregivers to plan small amounts of variegated colorful foods. A green bean, beet, and corn combination may have eye appeal, but the color scheme is irrelevant if someone can't swallow it. Try arranging three small bowls of applesauce or custard on a pretty plate and color each one differently (green, red, and yellow.)
Put a chocolate kiss on top of mashed potatoes.
Pour a liquid meal into your prettiest goblet.
The thought says, "You matter to me." Whatever you can do to lighten up the situation will benefit both of you.
Explore the Other Senses
When the patient's sense of smell remains strong, you might try filling a small container with cinnamon sticks or cloves. Talk about the holiday memories these smells trigger.
If smelling is problematic, decorate a tray or table with silk or velvet. Top it with autumn leaves or fir branches. Vary the textures you use to make the setting special. Touch is an often under-used sense.
What would the holidays be without music? Play some of your favorite songs and see how everyone's spirits lift.
Whenever you act from that caring place, it will show. Your patient will receive it at some deep level even when you don't hear the words "thank you."
Feelings and fears can become chronic when you avoid recognizing them. Trying to make a feeling disappear only gives it more power. Observe it, and it will change. Emotions and feelings go with being alive. Cherish them.
It seems as if everyone has advice to give you. They applaud the Mother Teresa in you and ignore the Gauguin. Everyone must deal with both parts. You can want to run away and still hang in there. You can be sad without wailing. You can be insecure and still go about your business. You can be frightened and still marvel at the thunderstorm around you.
In his book, The Four Things That Matter Most, Dr. Ira Byock gives a simple list. "I forgive you." "Please forgive me." "Thank you." "I love you." Put these thoughts at the top of every to-do list you make during this busy season.
The job requirements of a caregiver are to listen, to keep on loving, and to let go. The loveliest thing you can do is to be a companion on a life journey. You cannot be in charge of anyone except you. If you think it through honestly, whatever way you decide to handle the holiday situation will be the right way for you.
From this caregiver to all of you: Happy holidays. Give yourself the gift of enjoying each possible moment and celebrating your love.
Copyright Maryann Schacht. All Rights Reserved.
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