Being a Caregiver in a Hospital

September 5, 2018

After my husband’s fifth surgery, he developed other health issues and required more specialists to become involved. As his caregiver, I was responsible not only for juggling home and hospital care, but also coordinating with the other specialties as well.  It was mind-boggling.  Reflecting on the whole experience, I came up with some ideas that would have made a significant difference for both my husband’s recovery and my wellness.

The Health Care Team (HCT) consists of patient, caregiver and the health care provider(s); eg. surgeon(s), specialist(s), nurses, pharmacist, physiotherapist, family doctor, and possibly many others. It is imperative that the caregiver is familiar with any post-surgery or treatment recovery issues and what to expect when discharged.  The family caregiver and patient need to ask questions and take notes regarding instructions and who said what.

Prior to discharge, it is helpful for the caregiver if they are given training on various aspects of home care (eg. patient transfer, bathing, bandaging (even if home care is assigned), nutrition, exercise, or the importance of self-care).  While the patient is recovering in hospital, it would be beneficial for the family caregiver if the hospital could provide a caregiver ‘village’ or ‘hub’ where caregivers can gather to meet and learn from each other.  This would also provide an opportunity for the hospital to hold training courses for caregivers on such topics as wound care, nutrition, patient transport methods, and information on support and respite agencies. The hospital could recruit experienced caregivers to mentor/assist new caregivers.

Discharge planning should start a few days before actual discharge and should consist of patient, family caregiver, care coordinator (if home care is involved) and the primary care doctor at the hospital.  Knowing which day the patient will be sent home, who, what and when home care services will be available will make the transition much smoother.  The day of discharge the care coordinator should review that everything has been done to help the caregiver be successful and answer any last questions.

One of my biggest challenges upon discharge was the disconnect between hospital and home care. I mistakenly assumed the hospital and home care talked to each other, but this was not the case for us. The family caregiver should get the care coordinator’s contact information, in case there are questions/concerns when they get home. If home care isn’t assigned, find out from the doctor who to call.

Ideally, the care coordinator should introduce the caregiver and home care representative to discuss expectations, requirements, who to contact when at home, the date home care will be at the home and who will be assigned, what will be the schedule and provide an opportunity to ask questions. The care coordinator could ask how the patient is getting home and what ‘home’ looks like, in case it will impact their recovery, (eg. Are there stairs or does the patient live alone, etc.). The care coordinator could check in to make sure patient and family caregiver got home and that home care showed up when expected.  All of these ‘shoulds’ and ‘coulds’ would support the caregiver and help the patient achieve their best health outcome.

Carole Ann Alloway is retired, a mother of four, grandmother of seven boys and caregiver for her husband for the past eight years.  Carole Ann works with The Change Foundation, Health Quality Ontario, Ministry of Health and is an international speaker raising awareness of caregiver issues and offering insights on engagement and co-design.

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Allan McKee