Home care-giving: a nurse’s story

Justine (not her real name) provides home care for a select population.  As visiting nurse, Justine has previous experience with patient and family education through  time spent as a hospital rehabilitation nurse.  This article is meant to explore Justine’s personal story and does not represent the opinions of the nursing agency for which she works.  The goal of reporting this information is to provide a first person experience from a professional to those in the process of providing family care so that family caregivers can better understand what is typical and when to seek additional support from professionals.

Initial fears
Every family that embarks on the process of caring for a family member has specific fears.  While every family has different fears, Justine outlined some of the top issues for us:

• Specific medical procedures that need to be done for the patient, such as administering drugs via needle.  Some medical interventions are unnerving for lay people.  Discussing this issue with nursing staff helps relieve the stress and helps family members get services to assist with the procedures that they are uncomfortable providing.
• Dependency and not being able to meet the needs of the patient. This can be addressed through the thoughtful treatment of the family by the caregivers.  Positive feedback from a visiting nurse will allow the family to build confidence in their situation.
• Fear of talking about personal things in front of the patient.  One of the most difficult discussions is opening up the conversation about death. While some patients want everything done to keep them alive, others don’t. If the patient already has a plan, it needs to be posted for all of the staff coming into the home, so that they have access to it.  Alternatively, if there is no plan and the nurse opens the discussion, the patient may be relieved that someone has brought the discussion out into the open.
• Fear of death or finding someone dead.  Discussing this issue with nursing staff helps relieve the stress for family members and helps the nurse prepare the family for required services, such as hospice (or funeral) care when needed. 

The two latter situations also can lead to confusion for the family caregivers on end of life issues.  While a patient may have put his or her end of life plan in place and discussed it with family caregivers, a “do not resuscitate” clause may cause family members to delay taking action when the patient is in need of some basic care.  If a trip to the emergency room for some hydration and antibiotics could make the patient more comfortable, then the living will could still be honored and the patient could be comfortable.  The visiting nurse can assist by understanding the medical situation of the patient and suggesting the type of care that could be provided that is still in line with the patient’s wishes.  The family should always express their fears, which the nursing staff will understand are normal, but in expressing the fears, the patient can be assured of the best care possible for their situation.

Relating to family caregivers
 Listening is a key skill for visiting nurses in aiding the family caregiver.  As the visiting nurse builds a relationship with the primary caregiver, he or she learns what the pressure points are.  An easy way to help is to ensure that the home health aide comes at a time where the family member has plans instead of during a strict daily shift that does not accommodate the personal needs of the primary caregiver.  For example, the primary care giver indicates that they used to enjoy having lunch with their grandkids, but there is no time for this anymore.  The visiting nurse can arrange for the home health aide to cover lunch time on Fridays so that the primary caregiver can enjoy this time out with her grandkids.  This ensures coverage for the patient, and much needed time-off for the caregiver is maximized.  The visiting nurse has assisted in both goals just by listening and responding.

Justine also indicates that one of the easiest issues to solve is to reassure the family that they are doing a good job.   She  always tries to compliment the family and remind them of this as she leaves after her visit.  By saying something such as “you are doing a good job, he is lucky to have you” she supports both the caregiver and the patient.  Justine knows that if the family support stops, the whole house falls apart.  Her goal is to help both the patient and the caregiver. 

This nurse finds that it is hard to be critical of family members because they are doing the best they can with the information given.  For example, if the family member has been performing an incorrect procedure or having the patient move around in an incorrect manner, yet the patient is happy and content and there have been no adverse effects of the caregiver’s actions, it might be better to suggest that the fix be started at that time, going forward, and reinforce that the caregiver is doing a good job in caring for the patient.  Belittling or reprimanding the care giver for the error would not help the patient in the end, nor would it benefit the morale of the caregiver, of, by extension, the rest of the family.  She indicates that it is a very tough role to be 100% right in every instance, and she finds that caregivers are always doing the best they can at the time.

Learning about the patient’s condition
 Her work as a rehabilitation nurse, and her education, trained Justine well for her visiting nurse role.  The goal of the rehabilitation department was to prepare a patient to go home after a catastrophic incident.  From her studies Justine also found that Knowle’s principles of adult learning also comes into play when working with patients and families.  Justine knows that talking is not enough, she also need to provide information in writing, and experience is the best teacher.   As such, she recommends educational resources that are reputable can provide the family valuable information.  She suggests several types of online resources:

• Seasonal illness sites that educate on symptoms and treatments for  illnesses in general; 
• Search engines that allow you to research medications;
• Sites that allow you to research a specific disease and the most reputable are those run by well-known not for profit associations that support a specific disease.  They provide information on community relations, research on the disease, and disease progress and treatment routes.

Justine warns that some of the commonly found sites may not have reliable information, so it is a good idea to get recommendations for sites from your professional caregiver.

Finding professional services
Justine’s company offers a multidisciplinary approach, which includes staff member specialists in such diversified fields as social work, nursing, therapy, psychiatry, diet, pharmacy, and nurse practitioner. After initial contact, each patient is evaluated and services appropriate to the case are recommended by each discipline specialist. This practice is unusual, insofar as most agencies only have a nurse and social worker on staff. In those instances, the nurse performs assessments of risk areas and, if the statistics for a patient are out of a certain range of travel, the company will outsource a specialist provider. Within pre-arranged travel parameters, however, the nurse will provide all care. As such, families may want to ask their service provider if they are to receive care from staff or outsourced personnel.  A downside of the practice by Justine’s company is that some patients do not want 4-5 different people coming into their home, as oftentimes elderly patients are worried (with good reason) about being scammed. A general rule of thumb is that a hospital related agency is more likely to have more staff members of various disciplines than a private community agency.