My son Nicholas’ care is complex. He has round the clock one-to-one caregivers including awake night nurses by the bedside. Nick has a nasty habit of stopping breathing and the nurses rub his cheek or ear to get him going again. They reposition him frequently for pain and help him settle after seizures. The day shift carers are kept busy giving G-tube medications every hour or so, to say nothing of helping Nick pursue his many interests. How can information be shared effectively and efficiently among so many people who care for and about Nicholas? The answer lies in a highly specialized software programme called “Tyze“. Before we got Tyze, I would leave notes for the carers in Nicholas’ room. We had a white board on the bedroom wall for important message such as medication changes. A medical chart with daily notes sat on the table beside Nick’s bed. Still, messages got missed. When people work only a couple of shifts a week, they tend to assume that nothing has changed since the last time they cared for Nick. And of course, Nicholas’ carers are his friends, so a friendly banter erupts when a new carer arrives. Nicholas, being non-speaking and not very interested in the fine points of his own care directives would much rather lead the conversation toward WWE wrestling or hockey than towards adjusting his seizure medication up or down. All those factors combine to sabotage the flow of important information. Tyze is like a highly specialized and entirely private version of facebook, but with a lot more features. The invited members of Nick’s network are his care staff, the general practice physician and our immediate family. There is a calendar tab where medical appointments or fun events are entered. But there’s also a facility to list the need for wheelchair transport. Members of Nicholas’ Tyze network can sign up for a task such as arranging the transportation to an outing or organizing a social event. What is truly unique about Tyze is that it offers the opportunity to blend formal (paid caregivers, therapists, doctor) with informal (family, close friends) types of support. Recently, Nicholas had a rash on his face. I took a photo of it with my phone, sent the image to the doctor via Tyze and almost immediately, we had a treatment plan.
When my 90 year old mother became ill a couple of months ago, I started a Tyze site for her too. I live in a different city from her and so it became important for our family and my Mum’s carers to be in the loop. Now, Tyze is being rolled out worldwide and many corporations are looking at it as a perk for their employees who have caregiving responsibilities.
Tyze is great. I highly recommend it.
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