Resource Guide for Family Caregivers
While the care receiver is in the hospital

Within the hospital setting it is the physician who determines and oversees the medical plan of care. Generally this person is the family physician (general practitioner) although he/she may refer this responsibility to specific consultant specialists such as a surgeon, internist or geriatrician. At times a specialist may be listed as the primary or most responsible‖ physician: if this is the case it should be clarified with you and/or the care receiver (patient) first.

From there it is advisable to determine when/how you and the care receiver may meet with the physician and get reports on progress, treatment changes, etc. For example, some doctors make rounds at a usual time and you may wish to be present. Others may prefer to phone you at a mutually beneficial time. The hospital staff are also a great help in clarifying developments or changes.

The Registered Nurse (RN) caring for the patient is in charge of providing nursing care. Although this person will change from shift to shift, he/she will be a valuable source of information about what is happening to your loved one. The RN will carry out an initial assessment of the patient upon admission (which may duplicate information given in the Emergency Department), and will update this assessment throughout the hospitalization. The RN is not only an excellent source of information and interpretation, she/he is a key person to talk to about how, in your view, the patient is responding to care, and what you may see as additional needs. This is particularly important if the person is unable to speak for him or herself. One caregiver reported the following experience:

“Because of my husband’s paralysis, skin breakdown is a great problem. The hospital bed was very uncomfortable and when I spoke to the RN, she completed a detailed assessment of his skin, and his ability to move in bed, etc. She put a special pad on top of the mattress when he was next out of bed, which certainly helped. The next day a whole new “space age” bed arrived. For the first time with his recent hospitalizations, his skin was clear - without a blemish - when I brought him home.”

You may need to provide your information and observations repeatedly, as there typically is a daily and shift-to-shift turnover of staff. This situation makes it difficult for patients, caregivers and staff, and makes it vitally important that you continually seek ways of communicating about the needs and care of the care recipient. You may find it helps to write out significant pointers for the RN. These pointers do not need to be lengthy; they should be kept brief and highlight specific tips that will make a difference, such as:

  • My wife cannot sleep on her right side as she gets short of breath.
  • My Dad gets up to the bathroom two times in the night, and he can’t manage the call bell.

Routines

In most cases staff will be appreciative of your assistance, and will be flexible if possible around visiting hours and other rules. It is a win-win situation when you can be available to help with aspects of care that you are familiar with and which pose a workload problem for hospital staff. At the same time, it is essential that you stay realistic about what you are able to do so that you preserve your own energy, and ensure that other aspects of your life such as child care, work and downtime are not overlooked.

The reason for hospitalization will be the focus of hospital care. At times this will, of necessity, shift the focus from other chronic or disabling conditions the person might have. Most important is your perspective in being able to describe care needs that are necessary to the person’s well-being, but may not be a part of the specific reason for hospitalization. Examples of essential information staff may be unaware of might include:

  • the need to maintain a bowel routine for someone with paralysis; or
  • exercises to maintain arthritic joints.

One person described the caregiver’s role in this regard as a gentle watchdog.

It is also essential to ask about hospital routines and how you can fit in with visiting hours, meals, treatments, etc. Arrangements for a TV, telephone, or other amenities may fall to you. You may be asked to bring in certain items from home, or take home any excess items.

Clutter can be a problem in some cases, especially if too many flowers or get well gifts are received! Generally bed spaces are pretty tight, and you can help to ensure the space works for both the patient and staff.

Meals

Meals may be significant if the patient requires assistance to set up or full feeding. Clarify with staff that this is necessary and if you are available to help with any meals. Another caregiver’s experience was described as follows:

“While my mother was hospitalized, I became friendly with Ann whose mother was hospitalized in the next bed. Ann had explained to the staff that she would be unable to be at the hospital to feed her mother at suppertime. (Her mother was unable to communicate, very frail, and required assistance with all her care.) After I finished with my mother to get set up for her meal, I fed Ann’s mother. Shortly after, the dietary staff came by and collected the tray without bothering to check whether it was eaten. Ann’s mother would not have had anything to eat if I had not done that, and neither the nursing staff nor her mother would have been aware if I had not informed Ann when she returned that evening.”

Change of shift

It is important to know when the staff do their change-of-shift reports. This occurs two or three times a day (depending on the length of shifts) when the staff complete their work and provide information to the new staff coming on either directly, or in audiotape form. It is essential in such a specialized and ever-changing environment that information be passed on clearly and thoroughly. This takes time. Thus, seeking out staff at these times should be avoided. Remember, however, if there is an emergency, be sure to call staff anyway as there will be someone, often an aide, who can summon the necessary help.

Visiting hours

Visiting hours should be clarified with you at the outset. They vary from hospital to hospital, as well as between units within hospitals. Always ensure when you are preparing to leave that the patient’s call bell is within reach, and if bed side-rails are being used, that they are in the upright position.