When Touch is All

A second caregiving case study about the power of touch to bring comfort and peace.

After collapsing at home, Alvin was rushed to the ER, with his wife and family close behind.  By the time the family arrived, life support measures had been initiated, he was on a ventilator to support his breathing, and many IV infusions to support his heart function.  Alvin remained unresponsive. 

He was brought up to the CCU when he was stable.  I would be his nurse that night.  We quickly got him settled into his room, attaching him to even more monitors and infusion pumps for his IVs. The ventilator hissed at the head of his bed, and paperwork littered the bedside table.

His wife, Mary, slowly followed this procession with her grown children and waited patiently in the waiting room for the doctor to speak with them.  A few minutes later, they were standing in the hall beyond the CCU doors.  Mary was very small and frail- looking; she was 93.  Alvin was 95.  They had made the extraordinarily difficult decision to stop all life support and allow Alvin to die as peacefully as possible, if that was what was to happen.  He had been generally healthy until this event but his family knew that he would have never wanted to be attached to all this equipment, or to be limited in what he would be able to do if he miraculously recovered.  They were informed by the doctor that he would not survive without the support he was now receiving.  They signed all the releases required. 

The respiratory therapist and I went into his room and removed the ventilator, the breathing tube, and the IVs.  We muted the monitor.  The family then came in to say their goodbyes, to hold his hand, to pray together.  As they began to leave the room, Mary turned to me and said softly but with determination, “I have spent every night for the last 75 years next to that man. I want to be beside him tonight, too.”

The therapist and I looked at each other; neither of us had ever had a request like this before.  We asked her to give us a few minutes with Alvin first.  We gently moved him to one side of the narrow hospital bed.  Mary said good night to her children as they returned to the waiting room.  I helped Mary climb up into the bed and settle beside her husband of 75 years.  I drew the curtain closed and left the room.

I checked on them often, their bodies spooned together; both appeared to be sleeping soundly, Mary’s arm protectively across Alvin.  Over the next hours, his heart rate slowed and finally stopped.  I quietly entered the room and woke Mary to tell her Alvin was gone.  She kissed his cheek and stood up from the bed, leaving the room with the doctor beside her to tell the children.

My technical skills were not tested that night.  My humanity was.  The only thing I could do for this dear couple was to honor Mary’s wish to spend this last night holding the love of her life.

 

Using Our Senses

After writing about the importance of listening, I feel inspired to share thoughts about the role other senses play in caregiving. The sense of touch is essential and I’d like to share a couple of caregiving cases to illustrate the difference it can make. Here’s the first:

Bernard always greeted me with a warm, wide smile and soft greeting; his first words were of concern about how I was doing. Bernard was slowly dying of ischemic heart disease. He had been on our cardiac care unit for several weeks, hoping and praying for a heart transplant to save his life. I was responsible for his care on my shift so I had been monitoring his decline each day since his arrival. Bernard had been a mail carrier for decades; I can still hear him telling me with a sad, soft chuckle and tears in his eyes that he would never live long enough to collect his first retirement check. I was afraid he would be right.

Then one night, his condition started to decline suddenly. We relocated him to one of our larger rooms because more space was needed for all the equipment we were now using. My shift was over but Bernard was unusually restless and I didn’t want to leave him. I sat quietly at his bedside for some time, caressing his forearm gently, hoping to soothe him. Finally, he reached over and took my hand and held it in his. My hand was warm and his was cool and dry. We sat in silence holding hands for a few minutes. He looked at me with moist, soft eyes and said, “It is time for you to go home now.” I said I would leave in just a bit, but he repeated it with more strength in his voice. I stood up; and said goodbye with tear-filled eyes. I released his hand from mine.

Bernard died shortly after I left; he chose to be alone.

Touch is healing, physically and emotionally. It allows us to comfort and bring peace and pleasure to those we care about. I have always held the hands of those who are sick and dying. I have always hugged and supported loved ones. I always will. (Contrary to the myth that health care professionals maintain “objectivity” by putting distance between themselves and their patients, the more experienced a healthcare provider becomes, the more she or he learns to rely upon the restorative power of a gentle touch.)

Often, the individual who is ill is surrounded by wires and tubing, noisy machines and beeping monitors. Family and friends want to touch but are intimidated by the equipment, they are scared they will hurt their loved one or will disturb the equipment. Because of my own feelings and experiences, I try to rearrange things in the room to open an area for family to come closer, I try to reassure family members that they will not hurt their loved one and that they might all feel better if they hold hands.

I encourage all loved ones to ask the health care personnel if they can touch a hand, an arm, a cheek. I always hope that the answer will be yes.

Listening for Caregiver Solutions

Listening is perhaps the most expedient way to detect and resolve caregiver dilemmas.

Edie was not a happy person when I entered her home for the first time; she felt “everyone was making way too much fuss over a little thing.” Her physician had ordered home care nurses to visit her after her hospital stay because she had episodes of dizziness and falling. Edie had been recently diagnosed with an irregular heart beat and required new medications. Recently, the grandson who lived with her had married and moved out of state, so she was alone in a big, empty house. Her son, Bob, lived in a neighboring community and visited her daily before and after work. He wanted his 90-year-old mother to move in with his wife and him, or at least to move into a nearby assisted living facility. Edie would have no part of this: she wanted to remain in her own home and she didn’t want to interfere with his lifestyle.

Yet as each day progressed, Edie’s preferences were becoming less and less achievable, and the stress was taking a toll.

In just a few visits with her, I could tell by listening to her conversation that she was scared to be alone but unwilling to give up control. She could no longer manage the stairs to her bedroom at night so she slept on the recliner. She was having difficulty reading her medication bottles so she rewrote the names and times she should take them in large, black marker over the label, but this was a challenge for her to maintain. She was skipping her mid-day breathing treatments because she could not manage all the steps needed to set up her equipment – yet she was telling her son she had done them. She called the police several times a week after dark because she was sure someone was trying to break into her home.

Bob was doing the best he could: juggling a full-time job, his own home and family, and the new responsibility of daily visits to his mother. Some days he didn’t know where to turn, what short-cuts he could take, and how long this balancing act could continue. He was stopping in at Edie’s at 4:00 a.m. on his way to work, only to find Edie asleep on the recliner. He would quietly set up her breathing treatment and leave. Edie would call him several hours later to see when he was coming, having no awareness of his pre-dawn visit. Bob would stop on his way home in the late afternoon to check on her, and set up the evening treatment. His time with his mother was always hurried, little conversation between them occurred, and neither he nor Edie felt these were good visits.

By listening to both Edie and Bob describe their daily routines and stressors, I was able to develop several simple solutions that would make life easier for everyone. First, we got a pill box to organize her meds; Bob would have to refill it weekly, but this would greatly reduce the chances of missed or wrong doses. Second, we set up an area life-alert system so that she had easy access to emergency services. And third, by listening to Edie’s description of her neighborhood, we discovered a tremendous resource in close proximity: her neighbor, Sam. Sam had spent the last few years caring for his own mother. After his mother’s death, Sam found himself at loose ends. A brief conversation between Edie and Sam led to Sam deciding he would like to check on Edie daily. Every day around noon, Sam stopped over and had a cup of coffee with Edie. They would chat, and he could then he would check her blood pressure and set up her mid-day breathing treatment. Often, he would shop for her if he was heading to the grocery store himself. The change in Edie’s comfort level was amazing: she began to enjoy being “single” again, laughing and telling stories about her life. Her sense of loneliness and fearfulness greatly diminished. And Sam blossomed again in his caregiver role.

These simple adjustments answered the prayers of everyone involved. Edie maintained independence, giving her son a bit of relief and more time to look into long-term solutions that would better meet all their needs. And Sam felt needed again.

When we listen deeply to the individuals involved in a caregiving relationship, we can more fully assess the specific dynamics of their situation and more readily identify effective solutions. By listening with the intent to care, we gain a diversity of viewpoints that improve overall patient care.

Caregiving is never easy, it is never perfect, it is always a juggling act. But when individuals feel that their views are heard and respected, it can renew their sense of independence and self-control.

Are You Still Listening?

Recently, I shared a caregiving story about listening. Today I read something interesting enough to make me want to stay on this topic. Did you know that an estimated 45 percent of a typical workday is spent listening? I’m willing to assert that about 65 percent of a caregiver’s day is spent listening.

Listening is as important a tool in caregiving as providing meals and meds. Listening can improve the quality of care we provide, it can calm anxiety, and it can lead to important discoveries. Yet listening with the intent to care does not always come easily or naturally. When we have too many responsibilities, we can find ourselves short-cutting our listening time. We may find ourselves distracted, defensive, or impassively hearing, without truly understanding. All too often, our minds may wander to what we have to do next (or what we want to say next, when it’s our turn.)

So let me share some of my personal ideas about listening as a caregiver, to caregivers:

• Listening in an active and interactive art. When we listen actively, we are listening with genuine interest, and for genuine understanding. We are actively looking for meaning in what we are hearing. We might even paraphrase or restate what we’ve heard before we attempt to respond.
• Be fully present in your listening time with a caregiver. Be prepared to block out distractions – including your own voice. If you want to listen, you have to be prepared to stop talking! That includes turning off your inner monologue (the nagging internal voice that says stuff like, “Wow. How long is this going to take?” or “I’ve heard all of this before.”) Turn off the TV, radio, and computer. Close the door and be alone; caregiver to caregiver, caregiver to loved one. Create a listening space.
• Listen with your eyes. Respectful listening requires steady, focused eye contact on the speaker. When we listen with our eyes, we can pick up important caregiver cues that help put the message in context—is the speaker returning our gaze? Is he smiling? What is his body posture? Good listeners – like good caregivers -- telegraph respect by maintaining full eye contact. Think about the last time you saw a doctor or nurse who was busier recording notes on a chart than looking at you as you described your symptoms. (Core truth: the moment the listener looks distracted, the speaker starts to shut down.)
• Listen with your heart. If we are listening with the intent to care, we are withholding judgment. We are listening with the express purpose of understanding, caring, and helping. That means we don’t interrupt the caregiver to point out holes in his logic; we don’t expect a distressed caregiver to offer us coherent sentences; we don’t counsel the caregiver “not to worry about that.” Our goal is simply to achieve shared meaning and offer empathetic support. We accept what the caregiver is saying and feeling – not what we think they should be saying and feeling.
• Concentrate on emotional language. Can you discern what the caregiver is feeling as she speaks? What does her tone convey? Is she emphasizing certain words, or avoiding other words? Is she sighing repeatedly? The most effective listeners pay attention to what is being said, how it is being said, and what is not being said.
• Highly evolved listeners have a secret ingredient: silence. Sometimes, the most important response you can offer a caregiver is silence. The kind of silence that signals you have fully absorbed what they are saying. The kind of silence that says you take her words seriously. The kind of silence that affirms what she is feeling. The kind of silence that says, “I’m here to listen and support, not to solve.” Many of the things a caregiver will experience have no solutions; much of what a caregiver confides to us is so precious and personal that no words of response are necessary.
• Laughter and tears are both acceptable responses. It is okay to laugh when a caregiver describes a situation that is genuinely funny. Humor doesn’t stop when health does. It is also okay to join a caregiver’s tears. Empathetic listening means we respond with our feelings, not just our voices. The word empathy is derived from the Greek word empatheia, or passion/affection.

What listening tips or techniques work best for you as a caregiver…or as the caregiver to a caregiver? I’m listening….

Listening With Care

How can we tell what a caregiver needs most? How can we discover the caregiver’s deeply held anxieties? I’ve found that the most direct discovery tool is simply this: ask with the intent to learn, and listen with the intent to care. I share a simple example, below, to demonstrate my own experience. I would love to learn from your experiences (and, with your consent, I would like to post them here for others to learn as well).

I arrived at the front door of the home of my patient, Tom, and his wife, Sara, for my initial visit. Tom had been battling throat cancer for some time. He was now suffering from a complication of the radiation treatments, so swallowing had become very painful for him. Between the pain and the fungal infection invading his throat, he had made the decision not to eat or drink anything to limit the added pain those activities caused him. The physician has prescribed feedings via a temporary tube placed in his stomach. Tom was frustrated with the stomach tube, the discomfort caused by his medication, the pain that accompanied every attempt to swallow, and the fatigue of the daily trips to the hospital for radiation. Tom was frustrated with everything and everyone. He had already had more than enough – but these new feedings were the last straw. He was tired playing by a rulebook that caused him only pain; his decision to stop eating and drinking – despite all the assurances of the cancer center staff assurances -- was his attempt to re-exert control.

Sara, his wife greeted me enthusiastically at the door with a smile and a sigh of relief, “I hope you can help. Tom is very angry right now and is refusing to come downstairs.” I asked Sara if we could just sit and chat for a few minutes first. She was anxious and handed me the folder they had been given by the cancer center with the lists of medications, treatments and appointments for Tom. “Everything should be right there for you,” she said.

I put the folder aside without opening it and looking at her, asked, “How are you doing, Sara?”

Immediately, her tears flowed and she replied, “It has been so long since anyone has asked me how I was doing. I am not even sure anymore how I am doing. I am trying to do my best for Tom, I really am.”

That simple question encouraged Sara to open up and describe how surprised she was to have anyone inquire about her. Everyone in their circle – doctors, nurses, children, neighbors, church members -- was always asking how Tom was doing. She simply could not recall the last time anyone paused to ask about her. She also spoke about all the ways she was trying to adjust Tom’s diet to make swallowing less painful, and the level of discouragement she felt when nothing seemed to work. She described her inability to ease his anger and frustration, and her secret fear that she was somehow making everything worse. She apologized for sounding selfish and expressed feelings of guilt to even have these thoughts, but she was exhausted, emotionally spent, and on many days she didn’t feel well herself.

I did no more than listen with constant eye contact and hand her tissues. By the end of our few moments together (and that really was all it was), she was smiling and leaned into me and whispered, “He was always a handful to live with. I guess the cancer wasn’t going to change that, huh?” We hugged and I said we would talk more after I visited with Tom.

Each visit after that, Sara and I always made time to talk about how she was doing, what she was missing, what she had enjoyed and would want to do once Tom’s health improved. Over time, I could see that these simple conversations – these small gestures of asking and listening with intent to care – made a significant improvement in Sara’s outlook and ability to cope. By making purposeful caregiver listening part of the home-care visit, I was able to learn a great deal more about the family’s needs than I could have gleaned from any other method of observation. Ernest Hemingway once said that “I have learned a great deal from listening carefully. Most people never listen.”

I agree.