I met with Mr. D, a 59-year-old who suffered a pretty serious stroke a few months ago. He is now living back in his home after discharge from hospital. He doesn’t have a spouse. He has two kids, both out of town. Mr. D is doing quite well considering his brain injury. He needs some support in organizing his day to day activities and needs some help with reminders.
When I arrived, Mr. D, had no idea who I was or why I was there. I explained my role and he looked at me and said, “I have so many people coming and going and I have no idea who any of them are”.
I assured him he wasn’t alone in feeling this way.
Knowing “who’s who in the zoo” can be tricky to keep track of especially when you or someone you are caring for is receiving help and support in their home. In Mr. D’s case, he was receiving help from a private agency for medication monitoring (specifically his insulin) and he had a foot care nurse coming every 6 weeks. He was also receiving home support from Home and Community Care and outpatient rehabilitation at St. Joseph’s Hospital. My visit was in my role with a non-profit organization providing navigation services for people affected by brain injury and stroke.
That’s a lot of people to keep track of never mind remember who does what and when.
It is a good idea to list everyone who is helping you or someone you are caring for, who they work for, what services they provide, if it is private pay, publicly funded, non-profit, volunteer, family or friends and when the services are provided. Keep this list handy and in a place that is very visual. Depending on the people/organizations involved and the frequency of services, creating a calendar is a very handy way to organize the list. It is also very helpful for the people who are providing service to make reference to that list.
If possible, keep track of who comes to see you, and when and what the service or outcome was. For example, a physiotherapist from Home and Community Care comes to your home to see how safe your home is. Write down their name, title, phone number/email address, what they did and have them write out a few key points from the meeting or attach any information left behind. One important thing to note: it may not always be the same person providing a service, such as home support. Even your case manager with Home and Community Care may change. This can feel frustrating at times. So while the name of a person is still important, knowing the person’s title, role and from what organization, health authority or agency and how to reach them by phone and email are really critical.
If applicable, have a list of questions you need answered. Health and service professionals are often quite busy and may seemed rushed. Being prepared leads to better outcomes.
Think about assigning one person as a primary contact person. A family member, trusted friend or private case manager can also serve as the caregiver’s point person. Coordinating who is doing what and when is critical as it can be overwhelming and confusing for the care recipient to juggle and remember various visits and calls. The primary contact can also relay the information to the rest of the family.
Author: Wendy Johnstone, M.A. Gerontology