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 Dad and his brother were young, they had (what seemed to me, many years later) a huge Meccano construction set. My own brother and I were in awe of it, even though it had grown a little corroded when it became our turn to play with it.
Housed in a big old wooden box with rope handles, I remember that it exuded an oily smell, leaving our fingers bronzed and powdery with rust after we’d handled its parts.
There were the flat green struts of all lengths, each with its series of holes drilled at regular intervals. There were the ‘L’ shaped sections, again with holes along their lengths, which added strength to your construction. There were gears, axles and cranks of all sizes. And big clunky clockwork motors which drove your crane, robot or cable car system. (A lever on these could throw them into reverse gear when required. Even robots need to backtrack at times.)
But of course none of these component parts would have been of any use whatsoever without the vital nuts and bolts which allowed them to be fastened together.
As individuals, you and I are perhaps a bit like single components in a Meccano set. We’re all a little different, each ready to make our own unique contribution to the world we live in.
Without the nuts and bolts, however, we’d simply be a collection of loose parts. So what is it that connects us together? I think it’s our relationships with one another. Our friendships. Our respect. Our love. Sometimes, quite simply, our exchanged nods in the street.
The Meccano set’s nuts and bolts were its tiniest parts, not terribly inspiring really, but it made huge sense to look after them.
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I am what I would like to consider a very active senior. Ok to be honest, I use the term “senior “lightly and with a slightly bad taste in my mouth. I’m in my mid-fifties, I golf or practice most days, hit the gym every second day and I have a thriving creative career I work at part time. What’s so senior about that?
Anyway, you’ll understand that I was a little miffed when my youngest daughter suggested she set me up a “private online network”…”just in case.” She mentioned a tool called “Tyze” as being a handy place to get my affairs organized and to connect my supporters over the Internet.
“What supporters?” I asked her with genuine confusion.
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“When Stories Nestle in the Body, Soul Comes Forth.” Deena Metzger
A couple of weeks ago I wrote about the art of giving and receiving as one of the central tenants of a strong and healthy social (or personal) network.
With the passing of Fathers Day last weekend, I was reminded about the many different ways Tyze is used to support this interaction – the giving and receiving of care.
It struck me that sometimes the best thing we can give is not tangible help – like mowing the lawn or getting groceries – but something intangible – like sharing memories. These do make a difference, often to more than one person in the circle.
Tyze is a place for remembering and celebrating as much as it’s a tool to help organize care for someone you love. Think of it as a scrapbook and share photos and stories about holidays and events. We recently heard about a network that has been using stories and photos to keep a family history book and everyone is benefitting. Grandma and a family member read stories together to keep her mind active and engaged – a key practice to slow the onset of dementia. The grandkids are learning more about their family and can connect with each other from afar. Everyone experiences the joy of remembering.
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I was asked by NESTA to put together two minutes on fixing the care system for older people. Two minutes looks about blog length to me, so here it is:
Our current care system is based upon families providing care for as long as possible and then handing over to services when they can no longer cope.
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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.