DIE AT HOME: A FIELD GUIDE
Caregiving Is A Two-Way Street
Try This to Find Tenderness in the Tensions
“He doesn’t want to spend time with me,” Bill, 88, says of his son Ben who hired an aide to come in five mornings each week. The aide fixes breakfast and is on hand to help Bill — if he chooses to accept it — shower, dress, and squeeze into pressure socks which is a struggle for any two people working together.
“Is it true that Ben doesn’t want to spend time with you?” I ask Bill stretched out in his recliner in the basement apartment below Ben’s house.
Bill squints considering the question. After his wife died, Bill took Ben up on his invitation to move in even though it’s halfway across the country in a rural area where Bill knows no one. More than once at our weekly sessions, Bill has told me he is grateful for his son.
Six years into living under the same roof, Ben is increasingly fatigued and worried that his Dad is bored and lonely. To help make life’s later chapters more peaceful and meaningful, Ben actively expands their social circle: the aide, a card-playing friend, and I, an end-of-life doula and guide, each have a part.
Frailty or a life-limiting illness that binds two formerly independent adults together in a potato sack race to accomplish routine living tasks can strain any relationship. No one’s to blame.
The spiritual growth opportunity presented when multiple generations live under one roof calls for generosity of spirit, better communication, and some give-and-take. Easier said than done. Yet, it’s never too late to try a new approach in hopes of finding tenderness amid the tension.
What is the dream behind the complaint?
In a culture where speaking truth isn’t encouraged, we may be out of touch with our own needs and feelings.
Instead of asking for what we want directly, we complain.
Think of a complaint as a veiled expression of yearning. What lies beneath is often a wish for more connection or trust, a desire to feel valued, wanted, and cared for.
The next time you hear a complaint, can you listen for the longing and gently acknowledge that which lies beneath?
Is your belief painful? Choose a different one.
“Can you be sure that Ben doesn’t want to spend time with you?”
Bill cocks his head as if realizing that, of course, he can’t read his son’s mind.
Bill’s belief that Ben doesn’t want to spend time with him at all times may very well be somewhat true. Family caregiving is fraught with guilt, worry, and fear. Nights and weekends off are the norm for other jobs, most of which require little emotional labor and “pay” in exchange for time, energy and performance. Caregivers, especially, need breaks too.
In seconds, we find evidence:
Bill joins Ben, his wife, and the kids upstairs for dinner every night.
Bill is always invited to hang with Ben’s friends to talk or play games.
Ben coordinates and takes Bill to all his doctor’s appointments.
Ben takes Bill to lunches at the Senior Center twice a week.
“And he has rescued me more than once from scammers,” says Bill, his tone more gentle, possibly amused. Ads on his favorite cable channels keep selling Bill the merits of investing in gold. Robocalls promise to help him get the most from Medicare.
Listen without reaction.
Feeling heard is a basic human need. Listening without reacting is care Bill can show his son.
“What else,” I ask, “do you think might be going on with Ben that he hired that aide?”
Instead of guessing, we invite Ben to join us so Bill can ask his son directly, leaving out his feelings that Ben is “wasting my money on that aide.”
Bill also agrees in advance to quietly listen and allow his son’s answers to settle.
But first, pause.
Complaints and criticism can trigger even the stoic.
Our survival instinct may throw us into defensiveness or urge us to attack but such reactions can erode relationships.
When your gut tightens or your face flushes, what can help you take a beat?
Maybe three deep breaths are in order. Or silently counting to five. Or a Zoloft prescription. There’s no shame in whatever supports you.
How can you find that micro-second — so you can choose your response?
Check out assumptions.
Ben, his cheeks flushed from working in the field, joins us in Bill’s apartment and rests his cap on his knee.
“Can you help us understand why you hired the aide?” I ask.
Ben inhales and describes what weekday mornings are like for him: the stress of corralling, dressing, feeding, and getting the kids on the school bus. Before hiring the aide, Ben would then help his Dad get breakfast and take meds, but day after day, Bill refused to shower.
“The daily fight was upsetting,” says Ben. “I couldn’t just shake the angry, unhappy thoughts.” Negative emotions spilled over into the rest of the day.
Now, with the aide in the mix, Ben can count on two hours each morning to get stuff done before working on his farm, apple orchard, or short-term rentals.
Ben has some peace knowing that his Dad is starting the day with company. Bill is free to shower — or not.
Autonomy and choice are also basic human needs.
Now that Ben is neither police nor nurse to Bill each morning, there is more capacity for the two men to be together as father and son. Even as friends.
Exploring assumptions can help build mutual understanding and sow seeds of compassion.
Tap all of “The Four Agreements.”
Don’t make assumptions is one of four principles laid out in the book The Four Agreements. Author Don Miguel Ruiz elaborates, “Find the courage to ask questions and to ask what you want.”
The Four Agreements can help guide our relationships with ourselves, each other, and a higher power, if and as we understand it. Based on ancient Toltec wisdom, the other three agreements are:
- Be impeccable with your word. This means, Ruiz writes, to “speak with integrity” and “use the power of your words in the direction of truth and love.”
I also would add to choose the energy behind your words. Before speaking, try to disarm anger or irritation. Tap into your dream behind your complaint. Speak from that more vulnerable place — from your sadness, fear, or desire to connect peacefully.
Speaking from this softer place is both true and can keep you and your person emotionally connected.
- Don’t take anything personally. Ruiz writes: “Nothing others do is because of you. What others say and do is a projection of their reality.”
- Do your best. “Under any circumstance, do your best, and you will avoid self-judgment, self-abuse, and regret.”
Caring is a two-way street.
The word caregiving implies that one person gives and another takes.
What if we thought of caregiving more as a care-exchange?
Ask yourself: what can I give? As long as we’re still breathing, we can all try to show care for ourselves and each other. Here are some ideas:
Listening.
Gratitude.
Respect.
Cooperation.
Forgiveness.
The act of caregiving need not be lop-sided.
Navigating frailty and life-limiting illness together calls for gentleness over blame in all directions.
We WILL all blow it. And we can start over. Tomorrow is a new day.
Do your best.
What helps you find tenderness in the tension?
Willow Baum writes creative non-fiction about truth, freedom, and connection. Her current book project is Help Them Die At Home: A Field Guide for The Family Caregiver. As an end-of-life educator and “death doula” at FriendForTheEnd.com, Willow posts resources related to dying and death at this Facebook Group http://bit.ly/resourcesfordying.
