From Self-Care to Dependence
Every caregiver knows that the day will likely come when your loved one will no longer drive, will have to be in a wheelchair, or might be bedridden. You might move a hospital bed into the house and place a commode nearby, or perhaps a bedpan is all you’ll need. These steps indicate that your loved one depends on you, other family members, friends, and caretakers. You’ll work together to prepare meals, do the dressing and bathing, and perhaps even toileting. As your loved one becomes increasingly more dependent upon those who care for him, you may witness changes in his thought process, alertness, and moods.
Being dependent, needing assistance from others for dressing, bathing, and attending to the most personal and intimate aspects of personal hygiene can be humiliating and overwhelming. How can this be a time of healing?
Marcy
Marcy was a nurse in a Midwestern hospital. She worked the swing shift in the emergency room, raised three energetic daughters during the day, and slept whenever she could. Marcy’s husband, Sid, was a carpenter. He was a kind and hardworking man. Over the years, their dual career and split-shift lifestyle had taken a toll on their marriage. By the time the children were raised and gone, Marcy and Sid were more like housemates than life-mates. They shared the house and nodded pleasantries to each other as they crossed paths, but lived totally separate lives.
Seven years ago, Marcy was diagnosed with breast cancer. She underwent a modified radical mastectomy of her right breast. After surgery, Marcy undertook a grueling course of chemotherapy followed by radiation. It was a difficult and arduous treatment.
Marcy’s strength had always been in her competence. Even in her debilitated physical condition, Marcy managed and supervised her way through. She organized friends into car pools that transported her to therapy appointments. She kept a detailed notebook with questions for her physicians, and painstakingly recorded her changing condition. She researched all the current literature on breast cancer. She took charge of every aspect of her treatment and recovery. We used to joke that she didn’t so much recover, but instead smacked the cancer into submission.
On the fifth anniversary of Marcy’s remission, we celebrated at a luncheon in suburban Chicago. Pam remarked on her courage during the ordeal.
“You were so amazingly courageous,” Pam said. “A real example for the rest of us.”
Marcy looked incredulous. “Brave? I wish I’d been really brave. I wish I’d been brave enough to let somebody—anybody—know how scared I was.”
This revelation took Pam by surprise.
“Surely you told someone,” Pam said. “I mean, Sid knew, didn’t he?”
Marcy shook her head. “Sid probably knew less than you did. I used to get scared at night. I used to cry when I went to bed. But his room is on the other side of the house. He never heard me.” She took a sip of wine and leaned over the table toward Pam, whispering, “You know, he’s never even seen the mastectomy scar.”
Late that summer Marcy had a recurrence of her cancer, with lesions in the left breast. Tests showed widely metastatic disease with lesions in the bone, in the lung, and in her brain. The doctors told her that the cancer was spreading very quickly. She was given a prognosis of less than six months to live.
Marcy’s symptoms grew worse following her diagnosis. She developed excruciating pain in her back that could only be relieved with strong narcotics. Her strength waned. Sometimes it was too difficult to get out of bed, even for meals. Finally, hospice care was ordered.
One autumn day, Marcy was lying on the couch, staring out the window at the falling foliage. “Do you remember my remission party,” she asked Pam, “when I told you how scared I had been during treatment? You didn’t tell anyone else, did you?”
As Marcy continued to decline, we ordered a hospital bed and placed it in the living room where the couch had been, so she could continue to enjoy the view of the autumn colors. We put a walker next to the bed. With help from Sid, she was able, for a time, to get to the bathroom. As her strength declined, she became unable to walk the short distance to the bathroom, even with Sid’s help. He ordered a bedside commode. Sid had to empty it, and as her disease progressed, he had to help her on and off the commode. Finally, Marcy became completely incontinent.
Each of these changes and losses was met with struggle, resistance, and an overwhelming sense of personal degradation. And in each instance, Marcy lost the battle. With each defeat, she had to relinquish that piece of her autonomy, of her perceived dignity, of her attachment to authority in her life. It was a time of great pain and personal chaos.
Yet, concurrent with all these losses, in the midst of this struggle, subtle changes occurred between Marcy and Sid. It began with the walker. Sid would help Marcy out of bed, watch as she made her way through the living room, and sit patiently outside the bathroom door. Once in a while, he would tap on the door and ask, “Everything okay in there?” When the commode became a part of their lives, Sid would make small talk as he emptied and returned the container to her bedside. It seemed to ease her discomfort, and his own.
Once in a while, he would sit at her bedside and they would talk, sometimes for a few minutes, and other times long into the night.
When Marcy became incontinent and bed-bound, her care needs changed again. A home health aide came to assist with personal care. One afternoon, a few days before Marcy’s death, the aide arrived at the house to find Marcy in a particularly upbeat mood. She was smiling and joking, more relaxed than she had been since the diagnosis. The aide made her a light lunch, which Marcy ate with enjoyment. Then the aide offered to change her sheets and give Marcy her bath.
“You can change the linens,” Marcy told her. “But I don’t need a bath. Sid bathed me this morning.” She blushed a little and concluded, “It was really nice.”
Marcy died the following Sunday afternoon. Sid and her daughters were at her bedside, holding her hand as she left.
Professional caregivers share a deep understanding that it is an honor and a blessing to care for the dying. It allows us to experience ourselves as competent, compassionate, and giving.
On the other hand, the patient is often fraught with feelings of fear and loss. Relinquishing authority and autonomy causes the death of and individual’s perceived sense of self. Yet in this letting go, the dying begin to see clearly what and who they have always been.
A close friend of ours, who is a Hindu, gives this advice: “When Shiva, god of destruction, is knocking at the door, it is a wise person who opens the door and welcomes him into her life.” She elaborates, “You must understand that if Shiva is at your door, he will come in, invited or not. How much easier it is to make him welcome; how much wiser to elicit his friendship.”
In losing her struggles, Marcy finally allowed Sid to care for her. His care and concern made her feel safer, and it reminded her of another time in her life: a time when she had fallen in love with Sid. She remembered how happy she had been in those days—how special she had felt as a young bride, and how safe. In caring for Marcy, Sid was also reminded of how much he had loved her in the early years of their marriage. He had seen her differently then. He had seen her as beautiful and soft and delicate. And he remembered how much he had loved to touch her. Their late-night talks brought them close again, and reminded them of who they really were to themselves and to each other.
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