The Four Walls of My Freedom Read online

  After tearful goodbyes to our High Commission extended family, and with housing secured for Nicholas, we finally made our move back to Canada. Nicholas was wan but full of smiles. The first few weeks here were fraught with annoyances. We were shocked when we found out that the pharmacy could not fill Nick’s complicated prescription for his spinal cord pain pump. Although the Ontario Disability Support Program provides funding for most medicines, we were told that the pain pump medication, along with some other very expensive seizure medicines, was not covered without an appeal. Nick’s doctors had to demonstrate that there were no alternatives to these time-tested remedies (which in time they were able to do). Nicholas’ medications are now funded and his future is secure in that regard, at least for the time being.

  The challenges of securing housing and care for Nick were nothing compared to learning to live without our young man in the next room. Jim and I worried constantly. A couple of months into our new life back in Canada, I posted this entry on my blog:

  Last night I lay awake from 2–5 a.m. again. My dreams were of giant snakes in the lake at our beloved cottage. Why do I feel surrounded by lurking threats? I had no idea how my boy living apart from us would penetrate my days and nights with worry. I know that everything we did was right for him and for us, but at a cellular level, my heart and soul are objecting. The problem is that I don’t know if Nick is safe because I can’t check on him in the next room.

  Now, more than two years later, I do sleep through the night. We visit, Skype or phone Nicholas nearly every day. Jim and I take a month away from home in February to escape the cold, and we don’t fret or long to hold our young man. Sometimes, Nick is too busy to chat or visit with us. He has a rich life, full of work, amusements and friendships.

  In some ways, Nick is happier and busier here than he was in England, but it wasn’t always so. With the promise of a ticket package to see his beloved Ottawa Senators play on home ice, Nick was initially excited about coming home and moving into “his own place.” But the novelty soon wore off and he became somber and reflective. Eventually, Nicholas blurted out that he wanted to move back home. He tearfully admitted that living at the Rotary Home, away from us, was much tougher than he expected.

  Everyone rallied to support our young man while he was feeling down, and Nicholas experienced a real turning point during our first Christmas back in Canada. Perhaps he had initially imagined that we would celebrate without him, but being firmly in the bosom of our family over the holidays afforded Nicholas a new level of confidence and freedom from worry of abandonment.

  He now finds meaning and purpose by writing his hockey blog (http://www.thehockeyambassador.blogspot.ca), which has received well over seven thousand hits. He is also active on Twitter and Facebook. But Nick’s favour­ite activity is managing an online fantasy hockey pool involving all the interested members of our extended family, along with a couple of close friends. Nick would like to work, so recently, he created a cv and nervously delivered it to the manager of his local community ice hockey arena, hoping to be hired for a part-time volunteer job. He is learning that perseverance is a requirement of securing any employment, even if it’s voluntary. This particular dream is still a work in progress, but he’s determined to succeed.

  Nick’s paid caregivers are also his friends, and they often hang out with him during their time off, especially if something special is planned. The fiancé of Nick’s nursing manager visits biweekly to play PlayStation as a volunteer “gaming buddy.” All of these activities create a rich life for Nicholas — one that he enjoys and values.

  Jim has more time now to spend with Nicholas, as do my two brothers-in-law, Rob and Jerry. All three are recently retired and have spending time with Nick inked in on their “must do for fun” list. As for mobility, Jim and I, as well as Nick’s residence, purchased wheelchair vans, so transportation to sports events or the movies is not a problem.

  Nick’s health has been surprisingly solid since we arrived back in Canada. His seizures have plagued him from time to time, but we currently have those more or less under control. His pain is well managed by his spinal cord pain pump, lots of time lying down in bed and oral morphine. But there are always a few hours in the afternoon when Nick can get up for a trip to the golf course, the mall or the hockey arena.

  Almost two years to the day after we arrived in Canada from London, our family celebrated Nicholas’ twenty-fifth birthday. It was a very special occasion for everyone who loves Nick. I wrote this on my blog:

  I don’t know how many times we’ve nearly lost our Nicholas. Doctors told us in 2005 that he might only have two months to live — an in-patient examination of Nick’s sleep patterns that year revealed a terrible increase in obstructive and central sleep apnea, something that is untreatable for Nicholas because of his combination of disabilities. The palliative care team welcomed us and we tried to keep Nick pain-free and happy as we worried every day and night.

  On our return from London, our GP told Jim candidly that when we left Ottawa in 2006, he never expected to see Nick again. He marvels at Nick’s strength of character and at the power of love in our family.

  Last week our son turned twenty-five years old and we celebrated at our local sports bar with the family (minus Natalie, who is far away at graduate school) and a small group of best friends. Near our table, a ticker-tape display of sport betting odds rolled over the big screen and I thought about how Nick has beaten his own odds — he surprised everyone with his hunger for living.

  So, Are We Happy?

  Recently, I decided to check in with my family to see how well we had all managed to cope with the changes we experienced between 2011 and 2014. I used the Happiness Index described in chapter 16. I found my own scores were nearly identical to those in 2009. In other words, I am very happy, but I did show a slight dip in the areas of beauty/creativity and friendship. London is unparalleled for sheer aesthetic stimulation, and I do miss my dear London “sisterhood.” A slight shortfall in my scores relating to family relationships and mobility reflect new responsibilities for my mother. My mom is ninety-two and quite frail now, especially since surviving three near fatal infections over the past year. She’s still feisty, but there’s less bite to her bark these days. My sister Karen and I tag team Mum’s care, but we both worry we aren’t doing enough.

  Jim’s scores revealed gains in the areas of health and family relationships. He is fit, relaxed and has relished spending time with our family. For the first time in many years, Jim feels that he has control over how he spends his time and makes his life choices.

  Natalie’s scores are high; she is tired, but happy. We were thrilled when Nat was awarded one of eight full scholarships to study American material culture at the Winterthur Museum/University of Delaware. She is immersed in her passion — discerning cultural meanings in objects, especially textiles.

  I was most interested in knowing how Nicholas felt about living independently. I was surprised to find that almost all of his scores revealed higher levels of happiness than those from our London days. Most dramatic were the increased scores in the areas of meaningful work and family relationships. I asked Nick the questions I had been longing to ask since we moved back to Canada: “Are you happy living here at Rotary Home? Do Dad and I see you often enough or do we come too much? Do you feel safe?” Nick’s answers were interesting. He said that living at Rotary was okay, but he wished that he could live in his own apartment or back at home with us. At the same time, though, he sighed; he said that he felt very safe and he understood that he would not be secure in his own place or with us. Nick said that he wished Jim and I would visit more often. I laughed and said, “Well, that’s not happening! We’re already here all the time!” We both chuckled, but I knew that I couldn’t let this opportunity pass to nudge our lad a little bit further towards a confident interdependent relationship with us. Nick reported that he knew we loved him and that we would drop everyt
hing to come in a minute if he were ill or in a crisis.

  Our return to Canada has brought one more interesting change — a closer relationship between Nick and Natalie. Brother and sister now regularly Skype, and any sibling rivalry or old resentments have vanished. Both are delighted with their new friendship and are proud of each other’s achievements.

  What has made us all very happy over the past couple of years is the community support that we have felt from our extended family, staff at the Ottawa Rotary Home and everyone who supports Nicholas. Without that community support, no one in our immediate family would enjoy good health, happiness or hope for the future. With that support, we’ve been able to enjoy the seasons of Canada, savour each other’s company without the burden of dependency care, expand our garden and reclaim our health. In our family, we all feel that we have a good life, and we are very grateful.

  Our Family Contributions

  Our family contributes to Nicholas’ wellbeing in many ways that do not relate to his basic health care. We ensure that he has the technology he needs to engage with the wider world, as well as the opportunities to pursue his interests outside of the Rotary Home. We buy him a season ticket mini-pack for his favourite hockey team, and we ensure that he has the support necessary for outings to movies, restaurants and shopping malls.

  Over the past couple of years, we have worked hard to “future-proof” Nicholas, to ensure that he will continue to be safe and happy after we die. We contribute annually to Nicholas’ Registered Disability Savings Plan and are in the process of rewriting our will to account for the children’s adult status.

  Jim and I maintain our responsibility for Nick’s health care decisions and we work closely with the team at Rotary. We use Tyze Personal Networks to coordinate Nick’s family and paid supports in one secure online platform. Nick’s Tyze site houses information related to both Nick’s needs and his daily social activities. The care that Nicholas receives ensures that he is healthy and happy. The love and support of our family ensures that he has a rich life — one that he values and has reason to value.

  Our family has much to be grateful for — we are happy, healthy, and we have personal freedom to make choices. Perhaps I am the most amazed by our change of fortunes. For many years, I thought such blessings would never be for us. I thought they were only for people who were untouched by disability or serious illness. But the lessons I learned in the “four walls of my freedom” help me now to appreciate every day that is free of pain and illness. Helen Keller said, “A happy life consists not in the absence, but in the mastery of hardships.” We’re not masters of all our hardships yet, but we’re working on it.

  What’s New in Caregiving

  The way we care for each other is changing. Traditional government-funded “cradle to grave” care provision no longer exists in Canada or the UK. Able-bodied people are aging into disability, and those with disabilities are aging too. Everyone is living longer, but not necessarily better. Currently, almost one-third of all Canadian and American adults care for someone they love with a long-term health condition, disability or age-related needs. By 2061, over one-quarter of our population will be sixty-five or older.1 Given the low fertility rates of baby boomers, it stands to reason that in the future, able and healthy seniors will form a significant portion of the caregiving community.

  Making the future palatable for aging or infirm citizens and their caregivers will require humility, imagination and collaboration. Stakeholders agree that the need for wholesale change in the funding and organization of community care is urgent. The good news is that social change designers in the caregiving movement are intensely and creatively engaged in finding solutions that will “future-proof” our society.

  Some of the most successful models of enabling effective community care have been those that lay the groundwork for families and friends to look after one another with carefully coordinated support from professional service providers. Tools such as Tyze Personal Networks that bridge family (informal) care with professional (formal) care are capturing the interest of elected officials here and abroad. Elder Power, the Maine-based care coordination tool described in chapter 5 is another example of how contemporary social innovators are borrowing from social media to help healthy older people leverage their skills and talents with the objective of caring for their less-able neighbours. Today, the conversation of caregiving change leaders is peppered with terms like “co-created solutions,” “social innovation,” “social change labs,” “deep-change scenario planning” and “solutions-based advocacy.”

  For family caregivers and their vulnerable charges, the future is a work in progress. Dr. Bruce Chernof is chair of the U.S. Commission on Long-Term Care, and in his findings he identifies the tendency to approach long-term care through a medical lens as a barrier to positive change. He notes that people do not spend their lives in hospitals or doctors’ offices, but rather with families and loved ones in their communities. Dr. Chernof thinks that solutions to our contemporary care dilemmas cannot be found in the construction of more nursing homes: he strongly believes that more community-oriented care delivery is the way forward. But he doesn’t stop there. He envisions a day when family caregivers are fully functioning members of the care team whose services would be documented in patient records.2 Recognizing the caregiver role in the patient’s chart would embed the critical role of family in the circle of care.

  Al Etmanski and Vickie Cammack are caregiving change leaders in Canada whose innovative strategies are recognized internationally. They are the co-founders of PLAN (Planned Lifetime Advocacy Networks) and internationally renowned social change gurus. Etmanski identifies three key elements to transforming community care. He says solutions must be co-created across sectors and partners, be driven by solution-based advocacy (what can we do, rather than what can’t be done), and that all models for change must include the full participation of friends, foes and strangers. Etmanski has read the tea leaves for caregiving in Canada. He echoes the thinking of Dr. Chernof and believes, “The reform of health and social care systems and institutions must place priority on supporting those who provide the bulk of care — families, friends, co-workers, network members, neighbours, and volunteers.”3 Caregiving is still considered by many to be “women’s work.” But the support groups that Al Etmanski describes are almost entirely gender-balanced. In Canada, men constitute 46 percent of all caregivers and that statistic is likely to grow as men and women increasingly share the responsibility of family care.4 It will be interesting to see how male caregivers will influence future trends in social policy.

  Vickie Cammack, also the founder and CEO of Tyze Personal Networks, believes that the reluctance of the medical community to recognize the contributions of informal caregivers is the greatest barrier to positive change in social care. Her research into the positive health outcomes of network-centred care demonstrates that in order to realize a sustainable plan for the future, the modus operandi of the medical community will have to become flexible and collaborative. The family caregiver as a core health care delivery agent is at the heart of her collaborative care design.

  Governments and the private sector have roles to play in incentivizing and supporting caregivers throughout the country, but they cannot do it alone. Idea incubators throughout the Western world are establishing co-operative, innovative funding arrangements across sectors. “Change labs” are the model for brainstorming how stakeholders can provide affordable care for those who need it. These labs convene creative thinkers who want to both design models that can be applied to various difficult social problems and to play a vital part in valuable social change. These strategic partnerships and funding models are conceptualized in the change lab and then tested in small community trials.

  There is no single solution to our current and future caregiving challenges. Rather, innovators are looking at platforms for crowdsourcing ideas and for devising ways that government, business and
the non-profit sector can work together to enable care in society. Crowdsourcing concept proposals, grand challenges and prizes for excellence in innovation are popular now with agents of social change. When A Place for Mom, a private U.S. senior living resource company, recently launched a Senior Care Innovation Scholarship, young economists and business scholars flocked to propose concepts for innovation. Social media offers a myriad of choices for the flow of problem solving and idea sharing amongst professionals and end users alike. Widespread public engagement with online caregiving sites results in a shift toward greater acceptance of giving and receiving care across society.

  All of these social change-makers agree that a shared perception of abundance, as opposed to poverty in vulnerable communities, will lead to positive and sustainable development. John McKnight, co-director of the Asset-Based Community Development Institute has — for over thirty years — led the movement encouraging communities to combine resources in poverty-ridden neighbourhoods. McKnight is famous for knocking on the doors of homes and apartments to ask people: “What are your skills, talents and passions?” He collates the results of his interviews to create community asset maps. These treasure troves of neighbourhood resources can be mined by individuals who want to trade their skills, as well as by local governments seeking to leverage the talents of their constituents in the process of community development. McKnight’s work has forged the architecture for new research by Sendhil Mullainathan and Eldar Shafir, authors of Scarcity: Why Having Too Little Means So Much, showing that both the reality and the mindset of poverty cause its victims to make poor personal decisions that serve to perpetuate scarcity, hopelessness and inaction; poverty itself keeps people poor. Their research shows that innovation and deep social change can only come when citizens problem solve from an assumption of abundance.