Plato wrote: “Be kind, for everyone you meet is fighting a hard battle.”
When a patient is ready to be released from the hospital, both family and friends rejoice. But for those who wind up facing the unenviable task of helping their loved one cope with daily needs during the subsequent period of convalescence, these feelings of joy are often quickly followed by a sense of dread. Depending on the severity of the illness and the patient’s functionality, a typical caregiver may suddenly find him or herself wearing many hats, such as those of chauffeur, cook, maid, financial adviser, gopher, and, perhaps most frightening of all, doctor. Given the complexity of such a role, it is not unusual for people in this position to feel overwhelmed and alone.
Though I have stressed the importance of early discharge planning as it relates to the patient in an earlier post, too often the family’s focus is centered on the health of their loved one while the needs of the chosen caregiver go unaddressed until the time of discharge is at hand. As a result, many caregivers find themselves unprepared and confused as they seek to ease the patient’s transition that follows, be it to his or her home or that of a family member, a rehabilitation center, or nursing facility.
It can be difficult to balance one’s own obligations with the added pressure of another’s responsibilities - be they mental, physical, financial, or medical - especially when the situation has occurred with little or no warning, as is often the case. To best combat this, it is important to determine who among friends and family members will be in charge of post-hospitalization care at the earliest possible stage. This added time is essential to a successful discharge, as the caregiver will often have to rearrange work and personal schedules to make up for the demands of the recuperating patient, while also researching part-time or specified care and obtaining any medical equipment the patient may require for home use. In many cases, the patient’s temporary living quarters will also need to be adjusted for comfort and ease of access prior to discharge from the hospital.
To make matters worse, many potential caregivers are understandably intimidated by the prospect of providing medical assistance to their loved ones. From administering injections to overseeing medication, cleaning and bandaging wounds, and setting up and working monitors and breathing assistance devices, there is often much to be learned quickly. By participating in discharge planning from the outset, the chosen caregiver will be far better prepared to take on these diverse responsibilities when the time comes. He or she will have the opportunity to ask questions of doctors, nurses, and support staff, and to familiarize him or herself with the daily needs of the patient and the particulars of the illness.
Should the patient be suffering from Alzheimer’s or have other cognitive issues, the role of primary caregiver may take on even larger proportions. In these situations, it is important that the primary caregiver establish a relationship with the patient’s doctor and support staff so that he or she can act as mediator throughout the hospital stay and be fully prepared to address the patient’s needs after discharge.
If you should find yourself the designated point person for your loved one’s care outside the hospital, it is important to remember that you are not alone as you offer your support. The following is a checklist to help you stay focused and informed during this uncertain time:
• Keep a journal throughout your loved one’s hospital stay. Include the names and phone numbers of all staff members involved in treatment.
• Ask questions when you do not understand something for which you may later be responsible, and take notes on the answers.
• Ask for a written list of all tests, procedures, and treatments, as well as one for results that are still pending and follow-up treatments or procedures that need to be scheduled.
• Request a functional evaluation of your loved one’s current abilities, including an estimate as to how long it may take to show improvement. This step is essential in determining how much help the patient will need when brought home.
• Decide where your loved one will stay after being discharged. Determine who will help with continued care, including medical as well as daily tasks.
• Schedule a review of all your loved one’s medications prior to leaving the hospital. This includes dosage, number of times to be taken per day, and whether it is to be administered with or without food.
• Request a 24-hour service number for questions dealing with medications, dosage, interactions, and complications.
• Schedule a follow-up appointment within the next two weeks so that the patient can be evaluated by a doctor and assessed for any changes brought about by transition to the home setting.
• Make a list of supplies that may be needed during convalescence, including bandages, ointments, diapers, syringes, disposable gloves, and any other medical necessities.
• Request a list of any potential problems, including symptoms, side effects, or areas of concern. This includes issues of medication and wound treatment as well.
• Inquire about nutritional needs and any diet related issues that may need to be closely watched.
• Ask for training if your loved one requires medical treatment with which you are unfamiliar. This is especially important if additional equipment such as an oxygen machine or heart monitor is needed. Request a direct telephone number for issues or concerns relating to any equipment or procedure.
• Call the health insurer, if any, and ask about the services and coverage available to the patient under his or her plan. Understand exactly what will and will not be billed to the patient.
• Request a list of support groups that specialize in the patient’s illness, as well as any organizations that provide counseling for the needs of caregivers.
Though daunting, the role of caregiver can also be one of fulfillment as you help to steer the patient back to good health. By properly preparing yourself beforehand you can successfully avoid many pitfalls and remove unnecessary confusion, clearing the way for an easier transition and reduced stress for both your loved one and yourself. As you go through this process, it is important to remember that your needs are important as well, and burning yourself out as a result of sacrifice aids no one. Take time every day to focus on your own responsibilities and desires. It is only by staying strong ourselves that we can afford to help others in their time of need.