Caring at Home

October 2, 2018

On several occasions, when my husband was discharged from the hospital, he was attached to a pump which automatically dispensed antibiotics from a bag to fight off a recurring infection. This bag needed to be changed every 24 hours.  Unfortunately, every time he was sent home with this device, home care wasn’t available for three days after we arrived home.  The first time this happened I called everyone I could think of, but it was the weekend, and no one was available.  The second time, I figured out how to change it myself. In my previous blog, I suggested hospitals train caregivers on basic first aid just in case, and this is a great example of why caregivers need training.  No one wants to go back to the hospital if the problem can be taken care of at home.

At the time of discharge, the home care coordinator should explain the basket of services available for the patient and their caregiver, which is determined by needs.  At the same time, they could also provide a list of local caregiver support groups, resources available regarding the surgery or treatment, and arrange for a follow-up appointment.

If the caregiver had been assessed for ability and willingness in the hospital, home care can then monitor the home situation to ensure everyone is coping with this ‘new normal’.  The home care professional should talk to the caregiver (away from the patient) to ask how they are doing, if they have questions, need any support or respite.  It is a wonderful opportunity for the home care provider to assess not only the patient’s progress but also the physical and emotional wellness of the caregiver as well.  It’s easy to forget about the caregiver because the focus is on the patient, but the caregiver impacts how well and how quickly the patient achieves their best health outcome.  As a caregiver, you need to speak up about how well you are coping, what other responsibilities you have, or, if you need a night or weekend to yourself.

It is critical for continual learning and saving health care dollars that the home care management team checks in with the patients and caregivers they are serving. There is a wealth of information to be gained. Having a conversation with clients opens the door for improvement and savings.  Some clients may be reluctant because they are concerned it will impact their care, however, framing the conversation as an opportunity for the management team to refine their work scheduling and training programs as well as looking for cost-saving opportunities, and not as a performance review on an individual, should allay those fears.

When I speak with different groups on caregiver issues, there are two things I hear repeatedly; first, frustration with not knowing what time their support worker is coming; and second, that the support worker changes frequently. The patient is very vulnerable. Having to repeat your story, care preferences, cultural norms, is wearing.  Not knowing when the support worker is coming makes it very hard to schedule other daily activities.  Scheduling support workers is a real challenge because of a changing landscape of patients every day.  How can we work together?

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.

The National Institute on Ageing (NIA) is a university-based think tank focused on leading cross-disciplinary research, thought leadership, innovative solutions, policies, and products on ageing. The NIA’s mission is to help governments, health care systems, pension plans, businesses, and Canadian families to best meet the challenges and opportunities posed to ageing Canadians and by an ageing demographic. Follow us on Twitter and sign up for our mailing list.

Allan McKee