Holding Hands in the Dark

When my sister and I were young, we used to play constantly with the children of our next-door neighbours at the cottage. Once every summer, we'd be allowed to sleep outside together in a tent by the lake. The night I remember most vividly was when I was ten and my sister was twelve. 

We told ghost stories and shrieked with fear and laughter. We had flashlights, but we only used them to shine upwards from under our chins, imitating monsters. Eventually, our voices faded and flashlights were turned off. The darkness was almost liquid, pitch black. Still frightened by our stories, we held hands. Together, connected, we felt safe. 

Today when I read story after story of family caregivers on social media group support sites, I am reminded of that night in our tent. The darkness of caring can take the form of anything from a new diagnosis to the imminent death of a loved one. It is experiencing great challenges for the first time and not knowing what might happen next. It is reaching out a hand in the pitch black of not knowing and finding a friend. Someone who shines a light on to the path ahead and says, "I know this path and I will walk with you. I've been here before. Take my hand." 

Family caregivers are generous and kind hearted. We don't want anyone to suffer if they don't have to and if there's something we know that can help another, we'll share our experience.  And we know that when the dark descends, we just have to ask for the hand of a friend.

My Best Caregiving Tip

After twenty-five years of intensive caregiving, the most important thing I've learned is that giving good care over time requires a team.  Trying to manage alone and without the help of others inevitably leads to exhaustion, depression, ill health and even family breakdown.  But with a coordinated 'network of support', it is possible to locate the possibility of a 'good life', even with disability or chronic illness in the family.  A support team can be large or small - it can be comprised of both medical professionals, family members and best friends.  But without a tool to coordinate communication, even people with the best of intentions will be frustrated in their efforts to help.

Tyze Personal Networks uses social networking technology to oil the wheels of small, real-world networks of support, which can include paid staff alongside family and friends.  I've long been a huge fan of Tyze and how it can transform the caregiving experience from desperate to doable.  In our family, we use Tyze to coordinate our son Nicholas' care and we have a Tyze site for my Mom, too. 

So, what does Tyze do? Tyze is a FREE online social media platform that is completely private - it even has a vault to securely store sensitive medical documents.  Watch this video to get a closeup look at what Tyze can do!



  The most unique aspect of Tyze is that it bridges formal supports (doctors, therapists) with informal supports (family, close friends).  On our son Nicholas' Tyze site, we organize his schedule of appointments and ensure that they don't conflict with important sports events in his life.  His GP can correspond with his nurses or me about side effects of a new anti-seizure medication.  When Jim and I took a holiday to the Bahamas a few months ago, we checked Tyze every day to for a glimpse into Nick's medical profile as well as his leisure activities.  Last year, Nick posted his Christmas wish-list on Tyze and family or friends 'claimed' gifts to ensure that no duplicate presents were purchased.  We use Tyze as a tool to coordinate medical care, but many other Tyze users employ it to help their vulnerable relative to be more involved in their community, either through social clubs, churches or informal visits.  Therapeutic goals can be monitored, tasks assigned, schedules made and information shared with loved ones and professionals alike.  Tyze is a Godsend for anyone giving or receiving care and that's a fact.

THE FOUR WALLS OF MY FREEDOM: Lessons I've Learned From a Life of Caregiving (House of Anansi Press, 2014) is available everywhere in Canada and will be released on August 12th in the USA.

Sharing the Care Online - Can It Really Help?

When my son Nicholas was born with severe disabilities in 1988, my husband and I struggled to care for him on our own.  Nick turns 25 at the end of this month and all these years of giving care have taught me one great big lesson.  

Caring alone is not a good idea.  Caring TOGETHER is a much better way to look after my son and my mother who needs me too.  Mom is still feisty, but she is 92 and frail.  She needs help with cooking, banking, cleaning, and errands.  

Society tells us to ‘look after our own’ and we want to care for those we love best in the world.  But caregiving is a job that is full of thousands of small tasks and over time, taken together, the caregiving role can erode physical and mental health.  It can make a longtime caregiver feel invisible, sad and constantly inadequate.

I have learned that those in our extended family and our friends WANT to help look after our son and my Mom.  They do want to take some small role, but they don’t know how to parse a huge need (as in the case of our son) into a small, reasonable and helpful task that any non-professional could do.   Nick had his first major surgery at the age of two and afterwards, he was in desperate straights.  My mother-in-law was shocked by the distress in our whole family, but didn’t know how to respond.  She said, “If there’s anything I can do, but I’m sure there’s nothing I could do!”  Somehow, I found the wherewithal to respond, “Actually, could you maybe make us a banana bread?”  She was so relieved and happy to have a task that didn’t involve complicated and overwhelming nursing duties. 

Clever innovators in the world of health and long-term care have been working on how to give form and structure to taking sole responsibility for complex care off the shoulders of family members.   One such inventor is Dr. Douglas Eby at Southcentral Healthcare Foundation in Anchorage, Alaska.  Dr. Eby and his colleagues created the “Nuka” system of care.  Dr. Eby describes how Nuka works with a fictional, but typical patient called ‘Frank’.  Frank is 87 years old and suffers from diabetes and angina.  His daughter lives in another city and visits frequently to help Frank organize his home, medications and medical appointments.  Nevertheless, Frank calls 911 frequently and keeps a bag packed for the hospital at the ready.  

When the Nuka model of care was created, Dr. Eby changed ‘Frank’s’ primary diagnosis to one of ‘isolation’.  On the treatment plan was putting Frank’s daughter in touch with an outreach nurse who would coordinate with Frank and a community center to ensure that Frank filled his prescriptions, took his medications and attended a social group twice a week.  A network of family and professionals was formed to care for Frank in a coordinated and respectful way.  

We have such a network for our son Nicholas.  We don’t live in Alaska, but we are able to emulate the Nuka model using an online tool called Tyze Personal Networks (www.tyze.com).  Tyze is a FREE care coordination tool that facilitates seamless communication between professionals involved in Nick’s life with family members and best friends. The unique aspect of Tyze is the data security - it's the same as online banking, so it's accessed only by password and individual sites are not searchable on google.  This data security means that medical professionals, including doctors and nursing agencies can work together with family caregivers in a single, online network. Our GP as well as nurses and therapists participate in our son's Tyze network.  Other excellent and free online care coordination tools for friends and family are ‘LotsaHelpingHands’, Caring Bridge and Caring Ties.  

The important message is that sharing the care is a good thing.  It is a loving act to ensure we are there for the long term with those we love who need our help.  Because rested, happy, healthy caregivers make great caregivers.

Managing Care Online!

Last week, I noticed a health blog in the New York Times titled "Managing Care Online".  I had to read it and write to respond, describing our experience with a care coordination tool called "Tyze".  I've written about Tyze both in my book and in previous blog posts.  Here is my contribution to the Times blog piece:

• Donna Thomson
• Ottawa, Canada

I am the mother of a 23 year old young man with severe disabilities who recently moved away from home and into a residential care facility. With the help of round the clock nursing care as well as the support of friends and family, our son pursues his many interests. His life is full and rich. Such a large of team of professionals and family who care for about my son requires careful coordination and sure-fire information sharing. For this, we rely on a software program called Tyze (www.tyze.com). We use Tyze to schedule both medical and social appointments, arrange transportation and pass along vital information to all concerned (my son is non-speaking). Last week, I took a photo of a rash on his face, emailed it to our GP (the doctor is part of our private Tyze network) and received instructions for treatment which could be seen by all the care staff. Recently, my 90 year old mother was hospitalized, so we began another Tyze site for her. For us, Tyze is an indispensable tool in caring for my family members who require extra care and coordination.