Caretakers

Caretakers

Dean Schuyler, MD

EDITOR’ S NOTE

Through this column, we hope that practitioners in general medical settings will gain a more complete knowledge of the many patients who are likely to benefit from brief psychotherapeutic interventions. A close working relationship between primary care and psychiatry can serve to enhance patient outcome.

Dr Schuyler is a psychiatrist and a member of the palliative care team at the Ralph H. Johnson Veterans Affairs Medical Center, Charleston, South Carolina.

Prim Care Companion CNS Disord 2016;18(1):doi:10.4088/PCC.16f01931

© Copyright 2016 Physicians Postgraduate Press, Inc.

Published online: February 11, 2016.

Corresponding author: Dean Schuyler, MD, Geriatrics/Extended Care, Ralph H. Johnson Veterans Affairs Medical Center, Charleston, SC 29401 (deans915@comcast.net).

Funding/support: None reported.

Potential conflicts of interest: None reported.

As part of my job as a psychiatrist on the palliative care team at the Ralph H. Johnson Veterans Affairs Medical Center in Charleston, South Carolina, I make rounds with an internist and the third-year medical residents 3 mornings per week. They typically have 2 or 3 inpatients to see, but, lately, the numbers have been closer to 8 inpatients on the geriatric service.

The patients are generally men, typically older (60-90 years old), and often ill with multiple medical problems. Occasionally, there is dementia with behavioral consequences that involve the staff. Sometimes, there is anxiety or depression related to an illness or loss of a companion or loss of control. Always, it seems, there are caretakers in the hospital with the patients.

These caretakers (typically women) accompany the men and are designated as wives or girlfriends or occasionally neighbors. My role on rounds is to listen to the presentations of the patient’s problems and offer questions and comments on emotional issues.

One time that I recall well, I heard the story of a comatose patient and then the comments of his wife who had slept in a bed placed in his room every night for a week. I asked the trainee if he had spoken to her. He said, "No, she is not my patient." I responded, "But, your patient is in a coma and you can’ t speak to him. The wife is likely to be a valuable source of information." I decided to go back to the room and ask to speak to the caretaker.

She was delighted to be asked. "We can sit in this empty room where I go to use the phone," she said. We spoke for 45 minutes. When we were finished, I had learned a great deal of information relevant to her husband, the patient. I also had learned how she had devoted this part of her life to taking care of him. I returned to the resident and shared with him what I had found out.

It seems that medicine, in general, sometimes does not acknowledge the role of caretakers. These are people who often abandon their own needs and much of their time to care for an ailing spouse or parent. In some families, this situation may go on for years. I once had an outpatient who was the consummate caretaker. Not only did she care for her ailing husband when he was ill, she also made herself available to anyone in the community who needed care. Caretaking defined her identity adequately until she became ill herself. We then spoke often about how it was important for her to make time to attend to her own needs.

It is useful to remind caregivers to have a life of their own, alongside the object of their attention. It is useful to remind caregivers of the help that others may offer to complement the care they provide. Once, many years ago, I was asked to speak to a group of caretakers of patients with Alzheimer’s disease. There were 100 people present. I felt then, and continue to believe now, that this format was very worthwhile and must occur more often.

I have gained a reputation for attending to caretakers and speaking with them as well as to the patients. It seems to me to be a valuable part of the provision of palliative care.

CASE PRESENTATION

I was asked by one of the internists on the palliative care team to see and evaluate the daughter of a patient who was her father’s caretaker. She was a 60-year-old woman who had moved from Florida to Charleston, South Carolina, several years ago to take care of her elderly parents. Each parent had dementia and several chronic medical problems. The daughter had been married and divorced and recently had lived with a man whom she cared for who had died of cancer. After moving to Charleston, she looked for work but gave up once she realized that caretaking would be a full-time job. She looked into an assisted living arrangement for her parents and inhome nursing. Each option she found was too expensive.

She talked in detail about the house she lived in with her parents and all the precautions she had taken because of their unpredictable behavior. "Mother is spoiled," she said. "My father treats her like a princess." Her father was often confused and quite unreliable. She was spending little time on herself attending to her own needs. We spoke for about 30 minutes and made a plan to meet again in 1 month.

At our second visit, she told me that the remainder of her family was widely scattered and had been of little help in caring for her parents. The house needed to be sold and was currently "falling apart." I made an appointment for her with our social worker in the hope that she could identify some help for some of the concrete things that needed to be done. We made a third appointment to meet again in 1 month. She later called to cancel our appointment, saying that the meeting with the social worker had resulted in a plan that was being implemented and that "things were substantially better now and under control."

DISCUSSION

I have since met with a series of caretakers and have a solid idea of how all-encompassing it is to take care of an ill parent or spouse. Often, one of our internists evaluates the patient and I speak with the caretaking child or spouse. Taking care of an older parent or spouse is often a thankless job and the details consume the time and energy of the caretaker. Many need to be reminded to attend to some needs of their own. It is often helpful to assemble a team that can address some of the patient’s needs and free the caretaker from these responsibilities. Palliative care concerns the patient, often at the end of life. But, it also concerns the family, who are typically invested in providing care for their family member.

I have treated an elderly man with multiple medical illnesses for many years. When I first met him, his wife asked where she might wait while I spoke with her husband. I invited her to join us. She has participated in these monthly sessions for nearly 4 years. She has said to me, "I get as much or more out of these meetings than my husband does. Thank you for inviting me in."