I met with Mr.D, a 59 year-old who suffered a pretty serious stroke a few months ago. 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 that he wasn’t alone in feeling this way.
Knowing “who’s who in the zoo” can be tricky to keep a 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 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 remembering 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 privately paid for, 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 services 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.
If applicable, have a list of questions you need answered. Health and service professionals are often quite busy and may seemed rush. 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 caregivers 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 can also relay information to the rest of the family.
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– Mike G., Nanaimo, BC
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