If I keep walking, I won’t forget to remember

        “Just 6 months of walking may reverse cognitive decline”, finds a recent study reported in the American Journal of Neurology. Imagine that! 

       We don’t need yet another study to know that physical movement contributes to overall health and wellness, especially if it’s done in clean, fresh air. Unless we’re living on the moon, not lost on us is that we  don’t spend enough time outside and today’s children are at risk of a range of health-related conditions that can be prevented if they’d just prise themselves away from technology and get outside and play. That’s what children are supposed to do, right?

       Even those such as I, with challenges to mobility, appreciate that if we don’t move it, we lose it. In the course of a day, I get in a lot of walking - all of it purposeful. I have places to go and things to do, in and around my home. Winter weather keeps me inside most of the time but I’m far from sedentary. My outside time is most assuredly purposeful, clearing piddle paths for the dogs — one at the front of the house, outside the garage, and another inside their pen, clearing off the ramp that goes down into it and then shovelling a short path so they’ll actually get off the porch! They should be getting down on their hairy little knees and thanking God that I haven’t fallen on my face into a snow bank. Should that happen, their lives and my own would potentially be inextricably changed for ever.

       With 2019 will be my coming of age. I’ll be a certificate of authenticity stamped senior citizen. The big 65! To sustain any sort of fall down and go boom episode could mean the difference between living independently or becoming a nursing home resident long before my time. My goal is to avoid that lifestyle for as long as possible, if not entirely. Because I’ve spent a number of years renovating/
redesigning/reconfiguring in and around my current home to make it functional and safe, I’d be hard-pressed to move. Moving to the city, however, would be an ideal solution to a range of growing problems, though another way to resolve the situation would be to have a housemate. Co-housing makes sense. That way, given my advancing age, I could still ‘walk this way’ in familiar surroundings and have someone with whom to interact on a daily basis.

       Purposeful walking and its concurrent brain training is critical to someone like me, already living with a neurological insult. Keeping the brain fine tuned through movement goes a long way to ensuring that my legs will be able to continue patterning the movements taught to me over many years in childhood.

       During the colder weather, beginning in late October and going through March, I keep my brain and body in shape by stair climbing. Real stairs, people!

       Four times a day, at 6 hour intervals, I go to the den to put compressed wood bricks in the stove. The first set of stairs, from the living room has a railing on either side. The stairs going to the den have a railing on one side; medical grade grab bars have been strategically place on the wall spaces just above my head so that I may make the trek safely. 

       Years of practice in knowing where to position my hands on any given surfaces has allowed me to confidently move about. People who have watched me in action find that it’s all very fluid/seamless. Stair climbing is a challenge because I cannot lift my foot sufficiently to execute the steps up, up, up. I essentially have to swing my foot onto the step and then pull myself along. 

       A series of exercises I’ve done for years without assistance continue to ensure my upright mobility. The set of range of motion exercises undertaken with me by the team from Extra-Mural were ones that I could not and will not be able to do on my own. Once we’re into the warm weather, there will be another round of scheduled visits to work my legs so I may continue to go up and down the stairs. So that I may safely be able to put food dishes on the floor, and  to tether the dogs at the laundry room door. Yup! Having a pet keeps me healthy and on the move. Memories are made of this.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Adults can set the path to prevent bullying

December 17, 2018 

Bullying continues to pose risk to both the bullied and the bully and it’s no stretch to say that the immediacy of the internet and the gratification it provides is cause for alarm.  “Am I pretty enough?”  “Am I smart enough?” “Oh, look, I got a new dress. I must post a pic of it so all my Facebook friends may admire it.” If you don’t register enough ‘likes’, you’re at risk of being bullied. Sad but true.

What happens once the rush, the thrill is gone?  Many of us who grew up in vastly different, less stressful times have thoughts on how to curb bullying. Unplug! Have real, meaningful conversations with your children and grandchildren about the impact of bullying. Teachers have opportunity to open the door wide to dialogue about how bullying is affecting the students who are in their care for several hours each day, 5 days a week. Conversation is cathartic.

While developing this commentary, I chatted with one of my childhood friends, Nancy (Giberson) Everett, a long-time teacher in Stanley. Her youngest son, Jesse, now 30, lives with challenges to daily living; both Jesse and I were diagnosed with cerebral palsy as youngsters but neither of us fully fits the profile; ours were  ‘umbrella’ diagnoses.

“Jesse was so fortunate to have older siblings who would have beaten the living crap out of anyone who hurt him in any way; a best friend in high school, David Sparkes, ate lunch with him and sat beside him in all his classes. Also, because Jesse was with the same group of kids forever, they were just ‘used’ to him.” Nancy goes on to say that “ a supply teacher at the school who graduated with Jesse said recently that she didn't really ever think of Jesse as having a disability when he was in school.” 

Nancy went on to reminisce about our own childhood to say — “I think that is how I saw you as my neighbour friend; you were a girl who I could play with and spend time with instead of boys all the time.  I never thought of you as having any sort of disability — we just figured out ways that we could do stuff together without the boys.  Looking back, I didn’t see you as having a disability; I remember playing with your Barbies, bike rides to the drugstore, skipping in the yard.  Those are the memories I have.”

As for myself, I remember Nancy teaching me how to skip rope, my knees banging together with each tiny jump off the ground. Bruised knees featured prominently in my childhood.

Our mothers had occasion to supply teach in our local schools so we had to be on good behaviour; that’s just how it was. In primary and elementary, I was the only girl with mobility challenges; an older boy who attended the Catholic Church, as my family did, lived with a polio-like condition that featured intellectual delays. He would drop in to school from time to time for

the socialization. There were other older high school students who lived with disability but there was never a hint of bullying. We were a part of the community and that’s  the way it was. 

In grade 12, according to his Dad, “Jesse was in the Coop class with another dozen students, assigned to do his placement at the Nashwaak Villa assisting the Activities Director. After graduation,  we approached Jobs Unlimited to see what they could offer Jesse.  They took him under their wing and continued his placement at the Villa.  Jobs Unlimited hired someone to work with Jesse for a few months, assisting him with routines, and other skills. Currently, Jesse gets a few days each month working at the facility and is a much loved part of the elder care support team. And best of all, Jesse loves his time at the Villa.”

I’m pleased to know that Jesse is doing so well, as he gets on with living in spite of challenges. When I read that he was nominated for the Planetree Scholar Award and flew to Boston in October to accept it, I was so pleased for him and for his family.  His father proudly shared that, in 2015, Jesse was honored by the Third Age Centre with the "George Wakeling Award Honourable Mention" for his volunteerism at the Villa.

Jesse is an example of a young man who wasn’t a bully target in school. How adults in their world handle things from the outset determine the smoothness of the path, as young people with challenges move through the milestones of their lives. Jesse, with a supportive network of family and friends, had all the ducks lined up from the moment he ventured out into the world.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

The bullies and the bullied: a growing crisis

        As I read the headlines, splashed across many newspapers around the world, I was at once disgusted and sickened to know that such a thing could happen so close to home. ‘Such a thing’ was the blatant abuse of Brett Corbett, a student at Glace Bay High School, in Nova Scotia. Brett lives with cerebral palsy.

During lunch break, while at school, Mr. Corbett, was bullied into lying down in a stream, his body used as a bridge by the main instigator — a girl. The young man initially said it was a dare, though later investigations revealed that he was threatened by the girl, whose name was not published.

We all know that children bully. Why do some children bully, day after day after day without consequence? What makes a person a target, to be abused from first grade to 7th, to 12th? These question do have answers. Setting the stage to draw them out, in the form of round table discussions, could help. Organize groups, based on age appropriateness, develop the questions and then discuss the issues to pull out the answers. 

Girls bully, too! And they’re vicious. Why are they so vicious? What’s going on in their world that put them in the position of being a bully? Is their father a bully? Is their mother a bully? Are they being bullied by a sibling, older or younger? Children learn what they live and they act out on that. Some children go too far, with no filter, because no one has shown them, told them on a consistent basis what is and what is not acceptable.

The ‘fairer sex’ is more prone to a particular form of bullying, relational bullying, that has serious and potentially life altering or sadly, life ending consequences in some cases. They may use ostracism, rumour spreading or gossip to sabotage another child's peer relationships and isolate him from the group. 

I know why Brett went along with the demand put upon him. Like Brett, I live with cerebral palsy, but I grew up at a time when bullying wasn’t so overt. In fact, even covert bullying wasn’t part of my world when I was in grade school. Brett subjected himself to the abuses because he thought it would gain him acceptance. He wanted to fit in. Don’t we all? What he didn’t expect was how it would really make him feel — to see all those people gathered around, pointing and jeering at him, the object of their collective taunts. That had to hurt — a lot.

In complying, however, he gave up his personhood in that moment, and in the moments that followed with all those bystanders pointing and laughing. No one stepping in to stop it, to say it was wrong. Did this go beyond bullying? I assert that it did. It was a hate crime. Hate crimes against persons with disability are often under- or never reported because the victim and perpetrator know each other and fear of escalation is a concern. As such, school administration has a duty to address it in a way that is impactful and not simply dismissed as a youthful prank.

Abuses can be anything from a push, a shove, kicked away crutch or a cane, blocking a wheeelchair user from passing by you or in front of you. In school, bullying can come in the form of being excluded, never picked for team sports, even though the disability won’t compromise inclusion. All of those slings and arrows leave marks; sometimes for life.

One reason children and young adults with special health care needs might be at higher risk for bullying is lack of peer support, which serve as mechanisms of protection and prevention. Perhaps a buddy system could be put in place to pair children with special needs with an age-appropriate peer who could act as a buffer as well as become a friend. Very often, when asked, children with no challenges to fully functioning in the classroom are more than amenable to helping. It tends to be their parents who balk. Parents have the misguided notion that their child’s quality of education is compromised because they’ve become a ‘babysitter’ to a classmate with challenges. That’s a very narrow view that squashes potential for interpersonal growth during critical learning stages. Parents need to just step aside.

I’d like to see adminstration in Brett’s school develop a committee comprised of teachers, students and parents/community members to maintain open dialogue about the issue of bullying and what needs to be done to seriously address the concerns of the victimized.

To Mr. Corbett, I say — stand up and be proud of who you are. Cerebral palsy must never define you. It might limit some of your choices but it doesn’t determine what you can do with lots of hard work and the knowledge that you are a person of value and deserve to be respected.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Sometimes too much help is neither helpful or healthy

Helping yourself help yourself, I’m sure you’ll agree, is an interesting concept. It’s one that we must put into practice if we are to maintain an even keel in the course of all our daily doins’. 

One of the common frustrations with so many of us is that we don’t feel appreciated for what we do for others, whether on a sporadic or a daily basis. Caregivers of spouses/partners are often challenged with feelings of hopelessness because they aren’t getting enough input — words matter! If someone is looking after some or all of the needs of you or a loved one, let them know you appreciate them and their care and concern. Though you may not be able to reciprocate in kind, a verbal acknowledgement of your appreciation goes a long way. As you are able, a tangible acknowledgement of your positive regard is always welcome. To do or say nothing is not only hurtful, it’s insulting.

As plans for holiday festivities get underway for many families across the province and across the country, it’s important for us to be mindful of the challenges faced by those who don’t have the same ready access as we do to meet the needs of getting things done, whether it’s shopping for festive foods or stocking up on extra winter supplies to accommodate those major snow days. With that we must also ensure that we don’t over-extend ourselves and frustrate our own holiday enjoyment worrying about someone else. We don’t want to run the risk of creating a dependence to the exclusion of those we help at least putting forth an effort to help themselves. 

Feeling ‘put upon’ is exhausting, especially if we find ourselves looking after the needs of 4,5, even 6 people on a regular/weekly basis. Who will look after us? A way to break into the quicksand feeling is to invite friends in your own circle to become ‘friendly helpers’, offering assistance to neighbours who might need a bit extra, whether daily or weekly. Your contributions also improves health and wellness of the recipient and that reduces the burden on the health care system. It’s a win-win.

If you can help without compromising your own physical or mental health, your self-respect, or your financial wellbeing, you will feel less stressed. When a situation starts sapping your own resources, it’s time to reassess your continued involvement. You have to, as the needs of some people may be beyond your ability to cope on a sustained basis. That, my friends, is nothing to feel guilty about. In reality, their situation is not your problem and the fact that you were willing to make yourself available is very telling about your character. We have to accept that we can’t save everyone, especially from themselves.

As you are able, direct your friend or the subject of your helping to other possible available resources within your community. Care must be taken not to overstep, so if you are able to furnish contact information (name, telephone number) of helping agency representatives, then you’ve done your part as a caring friend. It’s up to the recipient of your support to take the next step and make some calls to get connected to more long term, sometimes lifelong systems of support.

When someone you’ve assisted, whether for weeks, months or even a few years doesn’t seem keen on improving their situation with regard to helping themselves, or if there’s no recpiprocity of some kind, then you may have to make the decision, however painful, to significantly limit or terminate the relationship, so that resentment doesn’t build to the point of irrevocably blowing up the friendship. The provider of care and concern may feel entrapped and that’s not a good place to be.

For myself, I’d be in a fine mess were it not for the friendship I have with my dinner and a movie pal, who has made herself available, as required,  to take me to Fredericton to pick up a grocery order at Victory, do a mall crawl, a shopping at a supermarket, and other errands, including taking dogs to the groomer, Thank goodness I don’t abuse her on a weekly basis; she’d have disowned me years ago. On our city outings, I provide lunch. Once home, I try to send her off with a care package — portions of dinner meals I’ve stashed in the freezer, slices of cake, a loaf of bread, a jar of soup.

Long ago, I told her to never say yes when she really needed/wanted to say no. Like me, she’s home alone, too, so my limited ability to reciprocate appeals to her — I like to bake and cook; she doesn’t! Food is the great equalizer.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Age is no barrier to sustainable friendships

According to children’s book author, Polly Berrien Berends, “everything that happens to you is your teacher. The secret is to learn to sit at the feet of your own life and be taught by it.”

In Fredericton, in our province and across this great country is opportunity to learn and to teach. I was struck by this on a trip to the big city several days ago as my friend and I talked about all the new housing developments going up in and around Fredericton, a common trend across the country. I have often wondered if the various brand spankin’ new apartment complexes have a ‘good mix’ of young, old, persons with disability, students, retired, stay at home Moms. That sort of thing. Within those groups would be amazing resources for learning, for teaching.

As my friend and I passed by streets with all the new subdivisions and their rows of bright, shiny houses, many with almost identical appearance on the outside, I asked myself whether neighbours get to know each other. Do they take the time? Are these new homes with the manicured lawns lived in by 2 working people — usually parents with young families? Are others home to  retired couples who have downsized from the sprawling downtown Victorian, or moved from another city to be closer to family? Are a few home to the recently widowed who have become isolated, not by choice but by circumstance? Are still others occupied by a group of university students sharing the house for the duration of their university degree program; one housemate moves on, another moves in? 

Many cities have certain areas, by virtue of their location, their street address, being identified as ‘bad neighbourhoods’. I won’t name names here, but the reality is that not everyone who lives on those streets, in those subsidized housing units, are bad people, criminals, or drug addicts, or abusers of women and children. Low income housing developments should not immediately imply that the people are ‘less than’, ‘low class’, ‘no class’, ‘users and losers’. We can’t know what life circumstances have invaded the personal lives of those who live in such places.  At least they’re not on the street, challenged by the elements and becoming sick in both body and mind. For that, they are grateful. Must their circumstance continue to punish them when they are trying to get out from under, many with a new start, in a new place? 

In holding on to misguided beliefs about a person because of where he lives, we deny ourselves many opportunities to learn and to teach. We deny our children. We can’t afford to continue with that practice if we, in this province, are to survive. To grow. Our youth  is our future, with some young people wanting to stay and make their own ‘grown up’ lives here in New Brunswick, as we ‘of a certain age’ are moving closer to the finish line of our life’s road.

It is, therefore, critical that we adopt a more inclusive attitude towards the younger generations. Some of them are lost in depression because of their own loneliness.

Living in isolation in all those pretty houses is frustrating happiness and emotional growth across ages and stages, across generations. Think about that for a moment. Back to that young family in the subdivision, with the two children in primary school — do you know the old lady down the street? She’s a widow and has been on her own for just over a year. She no longer drives as she’s developed a nervousness about city traffic. Could you meet her and see if you can help out; she’s a retired teacher and might be able to help your children with reading. Sort of a bartering arrangement. She tutors your children and they get to hear about what life was like for her when she was in school. They stay on for hot chocolate after the reading lesson. Why? Because they wanted to. It gave them an hour or so to spend doing something they enjoyed when they otherwise might have been home alone exercising only their thumbs on their cell phone. 

The children want to visit again tomorrow and bring a board game. What a great start to a blossoming friendship. Get the idea! 

I am not alone in the belief that the blending of people from different walks of life in subdivisions, in apartment complexes, in  low income housing is an ideal way for young and old to meet and get to know one another and not be  weighted down by how much money so and so makes or who is driving the best car, the fastest car. The circle of life lives on, on any street in any city or town in the country. We need to gather up a bunch of circles and reacquaint ourselves with lives, not just living in isolation with all our stuff. The happiness stuff brings is fleeting.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Your health and wellness depends on you

Recently, I read Jim Wolstenholme’s well articulated message speaking to the value of repurposing rural hospitals currently closed to fully functional use. They could and should be re-branded as providers of primary health care which could effectively fill gaps that exist within our current structure. Initial expenditures to bring these facilities up to current standards and needs would be recouped in very short order, while at the same time taking the pressure off the current systems of care that are essentially being taxed to the max. It’s a win-win that requires thinking outside the box and allowing for the very strong likelihood that it will work and work well. Those in positions to make such decisions just need to get out of their own way and really start listening to and hearing the men and women, and even children who would benefit from expanded services through revitalizing shuttered, retired medical facilities.

Primary health care teams at these site should include family practitioners, nurses, social workers, psychologists, and mental health counsellors, working collaboratively to improve the quality of life for all — from the very young to the very old.

Taken further, having a well orchestrated team in place can reduce ER congestion, and provide earlier diagnosis of serious condition/disease thereby expediting timely treatment protocols. All of these things could have been put in place years ago at the hospital of my youth — the long shuttered Northern Carleton Hospital in Bath if it had been developed into a fully functioning clinic.

A few years ago, I wrote an article in response to the intended plan to repurpose that building into senior housing. As it turned out, major headaches ensued and the plan to provide a much needed housing alternative for seniors never came to fruition. What happened? Why? Was such a carrot waved in other communities only to fall flat? Will plans with such a positive vision be revisited or is it now a case of once bitten, twice shy?

I was sorely disappointed that the plans in my hometown never materialized as the proposed senior housing would have provided a much needed service to the community and with it would have come ancillary services specific to the needs of the older folks. Secondly, it could have been expanded to include a day care center, or even function as an afterschool program venue. All plusses that would have concurrently enhanced the lives of older citizens of the community by broadening their social connectedness with the younger set. As well, it would have been a mechanism by which students, from elementary school through high school could get involved and explore the value of volunteering. Volunteerism contributes to the shaping of a community that may be struggling. But that’s for another commentary.

It’s not lost on me and many others who have interest in health and health care that rebranding outdated facilities that functioned as full-service hospitals makes a lot of sense. It’s time to stop mindlessly moving chess pieces around the board and make a full committment to walking the walk and doing something with abandoned hospitals, giving back to rural dwellers some semblance of security. Good health is not a given. It’s a gift. Some of us by virtue of how we think about life and living and how we conduct the daily business of living are better equipped to make the right choices and often have greater resources to ensure that we can live well. That being so, I believe that we should revisit user fees. Make no mistake, it’s not just those on the lower rungs of the socio-economic ladder who over-use/misuse hospital services, notably the ER; they do so out of fear, clearly.  Lots of ‘well-heeled’ citizens are frequent fliers in the ER system of care. User fees should be structured in such a way that they won’t discourage the truly needy from attending at the hospital for a real health situation/emergency. Common sense must be restored and a slap on the pocketbook is often an effective method of waking people up to their out of control behaviour and their duty to monitor the excesses that compromise their health.

As well, it’s important for us to be more aware of our community and the people in it. Being aware and alert to the needs of others impacts us in very important ways because what we do for our neighbour helps all of us. Your reassuring assistance to an ‘at risk’ neighbour breaks the cycle of ER over-use It really does. Isolated elders may need nothing more than a conversation and a cuppa. You’ve lifted their spirits, eased their minds and they no longer need to go to the ER for that people connection fix. You’ve done your part. Now keep doing it.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

For young people, volunteering is character building

Junior and senior high school students in many schools across Canada are doing something that students in our province are not doing — they’re volunteering in their community as part of the high school graduating requirement.

In 2011, the Progressive Conservatives plan to introduce mandatory volunteering fell flat. The feeling was that groups relying on volunteers were not eager to accept high school students who would be ‘required’ to be there but not have wanted to be there. Were students actually consulted about what they wanted? Or, did directors of the various groups simply decided that students wouldn’t want to participate as part of a graduating requirement? Student input is critical; after all, it’s their futures on the horizon.

Put off by the name ‘volunteering’? Call it community based learning because, as a process, it makes a lot more sense, as all students, university-bound or not, would benefit from work/job shadowing experiences through junior and senior high school, as they spend time in the workplace, absorbing all the intricacies involved in how a business is run, perhaps experiencing several different components before settling on one they liked, about which they’d like to learn more. Not unlike opening the pages of a book and reading from beginning to end, learning about all the characters and plots and how the story ends. Hands-on learning has a staying power as it gives students an opportunity to determine if what they’re physically doing is something they’d like to learn more about, with a view to developing a job or career after high school is behind them.

Volunteerism has potential to open doors to university or to jobs opportunities or training programs that offer scholarship based on volunteer hours in the community. From volunteering grows self-driven learning which demonstrates to teachers and others that the student is sincere in his efforts and serious about his goals. Administrators must think outside the box and free themselves of outdated notions about how children are ‘supposed’ to learn.

Sometimes, student interns/volunteers may receive pay for their work and an internship may develop into a full-time summer job during high school. For the student who hasn’t been sufficiently encouraged, opportunities tend to slip out of reach, so volunteering opens access and allows them to realize that they can do the job, that they’re good at it, and that they could probably make a full-time career out of those early opportunities once the required book learning has been completed.

 

The spirit of volunteering actually must begin in the home with parents leading by example. From the time a child comes into the world, the stage is set for youngsters to see community service in action through their parents, their first teachers. Over time, when they age into their place as a contributing member of society, children should already have a set of skills and aptitudes that can be moulded into a means by which they can contribute in a meaningful way, so that come junior and senior high school, meeting the requisite number of hours of volunteerism/community service is relatively easy. Lots of students are well acquainted with volunteering as it was part of the fabric of their upbringing from the time they could walk; they may have accompanied Mom or Dad to community sponsored fund raising events; bake sales, service club sponsored sit down meals in the church hall, library book drive, and so on.

Most volunteering schemes in schools in other provinces expect students to complete 25-40 hours of community service to meet the graduation requirement and some schoolboards have outlined acceptable venues in which to accommodate volunteering. The library is often a great resource to establish a list of venues that welcome volunteers. 

Again, I have to say, the goal should really be more about students being able to choose their own path and be allowed to demonstrate a maturity that illustrates that they know what they’re doing. Students fall across different parts of the spectrum when it comes to eagerness about mandatory volunteering. Take out the ‘mandatory’ and the landscape changes significantly. Lots of students don’t think twice about it, especially if they grew up in it, aware that their contribution to community life does matter.

I believe that there is a place and there is a need for volunteerism in our junior and high school curriculum, incorporating it into the fabric of the current learning processes and applying it as credit hours towards graduation.  Many of a community’s old guard is aging out and really could use younger bodies, steadier hands and feet to work along side them, so what better way to meet the demand? Our young people are the future of community life, especially those with aging populations that simply can’t keep pace with the demands of participation. Talk to young people in your world about the value of volunteering.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

Online community get-togethers can take you places

“The loneliest people in NB,” read the headline of Stephen Llewellyn’ recent contribution to Brunswick News. It struck a chord. The article was developed out of an interview with retired St. Thomas University Professor Dan Gleason. I extended an invitation to Dan to come out to Chez Rockwell for coffee and cake. Given I was one of his  students during my first year at STU, it would be fun to reconnect. I cautioned Mr. Digby, the tenacious one, to be on his best behaviour.

Being alone, on my own, was rooted very early when I was a toddler, separate and apart from siblings, doing my own thing, while they did theirs. I had plenty of play time with my brothers and sisters and others, but artsy craftsy pursuits held my interest. The physical challenges of cerebral palsy can’t be held up as what isolated me; it was more a matter of temperament. I was into more solitary brain bending activities and that is still true today. As I’ve said in earlier discussions, alone and loneliness are not synonymous.

Admittedly, being removed from the hub of activity that city living affords has been a challenge and is becoming even more vexing. My world would be significantly broader were I to move back to where I spent much of my adult life and had readier access to points of interest like libraries, eateries, museums, etc. Perhaps I’m due for a change sooner rather than later. We shall see.

Thus far,  I am able to maintain social connections in a unique way — infrequent but planned city outings coupled with an established routine of internet exchanges with folks of like mind — discussions about books, music, politics and so on; invariably discussion turns into sharing favourite tried and true recipes and banter about what new ones we’re considering. A gal’s gotta eat! 

Text based ‘conversation’ has filled in the gaps for the truly shut in; many go on to video chat using downloadable chat ‘apps’ like Skype or Facetime. Some have even organized real life, in person get-togethers. And then there are those who have found a connection that has taken them on the journey of dating and mating.

Years ago, I and another fellow Canadian, also living with cerebral palsy, were joint operators of a chat room that was a welcoming place for persons with disability. I was more a mentor to the then 18 year old young man from Ontario who started the channel. We would chat about a range of issues that affected the daily living of persons with disability. Sometimes, we were called upon to help someone in crisis; that person new to disability who was looking for a job; the woman with amputation who was being abused and didn’t know what to do or how to get out; the guy who liked a girl at work but didn’t know how to approach her — he lived with fully involved quadriplegia and she was one of those Madison Avenue pretty girl types. Internet text based chat, then as now, serves a valuable function with regard to social connectedness amongst the disenfranchised.

Recently, I have been reconnected with chat pals from ‘back in the day’, and it occurred to me that perhaps there is still a place for ‘conversation’ that involves banging away on a keyboard. And so was born #seniorchat on Dalnet server via Mirc or X-chat (Mac users). There are a number of other chat programs that are still available and would accommodate access to the chat space I’ve created. Please feel free to email me for instructions on setting up so you may join us and toss in your 2 cents; 10, if you’re feeling particularly inspired.

I heartily agree with Prof. Deborah van den Hoonaard’s assessment when she speaks of how seniors are treated within various ‘helping’ systems. Our senior care programs should seriously consider adding another layer to the currently available services that go beyond custodial work. Because of frequent rotations of workers making home visits to clean the bathroom and dust the living room tables, there is little in the way of what I call ‘people polishing’.  People need to be acknowledged as thinking, feeling human beings. To fill in a gap, the Red Cross’ Senior Check-in program is laudable but there needs to be so much more on a sustained basis; each and every day there must be some mechanism of connectedness put in place for those who are skirting the fringes. I believe my new chat space might be just the ticket for some old geezers and geezerettes such as I to ‘get connected’.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

And a physician's assistant will treat you

“How a busy ER cut a four hour wait time to 90 minutes” was a headline that caught my attention as I pored over the online pages of Brunswick News articles.

I haven’t visited an ER since 1997. Yup, you read that right. The potential to be trapped in a waiting room with a dozen sniffling, coughing toddlers has been enough of a deterrent. In my world, the reason is clear — I cannot afford to let anything bring me down — whether a cold, the flu, a banged toe, a cut finger, a blinding headache.  My ER visit all those years ago was related to a subsequently diagnosed heart condition/defect which is, to date, well managed.

The last time I required a prescription was for an antibiotic a few months ago to treat a grotesque sinus infection — my first one ever! I almost had it kicked with homeopathics (yes, they do work!) but stronger ammunition was called for. I got the script during a routine visit with my doctor as he went over results of thyroid function bloodwork. 

ER wait times are notoriously long in this province and it’s abundantly clear that physician’s assistants have a place in that environment to move patients along in an efficient and timely manner as they dispense care and consultation to the man, woman or child who presents with one symptom or several that can be successfully treated without the need for a ‘real doctor’.  We must not dismiss the skills of the physician’s assistant.

They are highly trained professionals who have made the decision to pursue a career in the health field that allows those with whom they come into contact to better help themselves. As taxpayers, we need more of them if we have any hope of reducing the burden of the systems of care to which we’ve become accustomed. If we were to be honest, we are a significant part of the problem. Yes, we are.

How many of us have a bare-bones first aid kit in the home? Admittedly, I don’t but I do have a range of ‘medical supplies’ in the event of an emergency — elastoplast bandages, pressure gauzes, sinus tablets, cough medicine, antihistimines, over the counter pain management medications. You get the picture.

Canadian Safety Supplies has a ‘dorm room’ kit that would be ideally suited for at home use and be particularly valuable to those who currently have nothing in the way of self-care/treatment ‘tools of the trade’.  The 293-piece kit has products to treat cuts and scrapes, sprains, disinfection, eyewash and eye protection, burn relief, insect bites, flu and pandemic protection and disinfection, antibiotics, a digital thermometer, among other items. You could adapt it to your own needs with things you use on a regular basis and would benefit from having on hand in case of emergency. Also include any special items that would be needed for youngsters in the home.

  Such a medical kit would go a long way to ensuring that you won’t have to spend 8 hours in the ER to be seen for 10-15 minutes by a physician’s assistant who will send you home with sound advice on self-care and recommendations for things used to treat situations that never required an emergency room visit in the first place. 

If you’re artsy craftsy, you could recycle dish cloths and dish towels to make pouches for ice packs. In my freezer, I have a selection of ice packs available ‘just in case’. Re-useable hot/cold gel packs would also be appropriate additions to your at-home medical center; they’d also be useful for pet emergencies. On occasion, I’ve used a bag of frozen peas for knee or ankle swelling due to a strain; they work very well  and may be just thing to eliminate the need to visit the ER if you took a tumble on the ball field or on the living room floor trying to get to a dog before he leaves you a make work project. 

Think about your pain level - gauge it. Then decide if the situation actually warrants  a trip to the hospital. Calling the ER to speak to a nurse or a physician’s assistant may be sufficient to reassure you that no, you don’t need to go in. Staying home is your contribution to saving taxpayer dollars that happen to be your dollars, too! Think about that each time you are convinced a slight temperature, a swollen finger, or a slight cough needs to be seen immediately and at the hospital. Besides, hanging out in the ER invariably elevates stress levels, so your body will thank you if you just stay home, put your feet up and have a ‘for medicinal purposes’ splash of single malt or beverage of choice. Or, if you’re inclined, a nice bowl of ice cream. Comfort food is good for a body!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

I live alone, but I'm not lonely

“The feeling of being isolated is an essentially human feeling. It does not simply signify the fact of being alone. Loneliness is different from solitude. We may choose solitude; we may be alone and happy, because we know that, in other respects, we belong to a family, a community, the universe, and to God. Loneliness is a feeling that we belong to nothing, that we are cut off from everything and everyone, and that we are of no value.” [Jean Vanier]

Across the country, loneliness has reached epidemic proportions according to many studies in recent years, pointing to it being a bigger risk than smoking or obesity. That doesn’t surprise me at all. In fact, it saddens me to know that people have become so isolated, right under our very noses.

If you see your family doctor regularly and are experiencing difficulties coping with emotional troubles/stress, you must verbalize them if you are able. In knowing how you’re really feeling, your doctor, in consultation with other clinicians, will make every effort to get you on track to take advantage of resources that can help. You don’t get if you don’t ask. 

Health professionals are becoming more tuned in to subtle signs of trouble, asking specific questions to elicit responses that tend to shine a light on the true nature of what’s going on in the day-to-day world of their patients. This is especially important when treating folks who live on their own without ready access to family and lacking a solid network of friends in the community. Isolation amongst seniors is pervasive; those of advanced age, into their 80s and early 90s, who are able to physically maintain their home, whether a small apartment or a small house are so intent on proving they can do it that they balk at the very idea of help. Sadly, family and friends may stop asking. Don’t do that. Keep checking in and pay attention for clues that may indicate there’s a problem with your loved one.

As holidays approach, many people who live on their own wonder what they will do. Well, to start, if you have a particular skill, like sewing, call your local churches and let them know that you’d like to participate in their Christmas play, helping to make costumes. If transportation is an issue, let them know. Other opportunities for social engagement exist during holiday time as well; serving at church or service club sponsored sit down meals at the local church hall or community centre. Baking is a great way for folks to get connected. It’s a tangible way for you to share of yourself. If you make a fabulous pumpkin pie or mince pie, don’t keep that to yourself. Fire up the oven and bake a few to take along to the next community social gathering. You don’t have to stay long if you don’t want to. 

Loneliness is an easy trap to fall into, with self-worth taking a hit as the drive/desire to get out there and participate goes flat. Then there’s the matter of isolation being a by-product of illness and lack of connectedness because of it. Often, people who are unwell physically just don’t have the get up and go to be out and about. That doesn’t mean they don’t want to be involved, to have people contact; simply put, they don’t have the energy. Many conditions and diseases are so fatiguing that they really do suck the life out of one. I believe that we have an opportunity help change the landscape by looking to how we can make a difference in the lives of those who are living on the fringes, perhaps just two doors down. Don’t just talk about what you would like to do, get out there and do it. Someone needs you. In the effort to combat elder loneliness is also opportunity for youth driven volunteerism. Imagine that!

If you’re a shut in more by choice than circumstance, you really can make a difference in the life of someone who has no choice. Have you ever considered becoming a friendly visitor to the hospitalized person — perhaps reading the paper with them. Even visiting in the cafeteria of a nursing home is a way to connect with those who don’t always have enough ‘people contact’. The bonus is that it helps break the back of your own self-imposed isolation.

  Recently, I had a telephone conversation a grand old gal in her 70s and living alone, she wanted to know what services might be available to connect her to the community. She knew she needed to ‘get out’ more, saying that a computer she once had gave her a ‘connection’; now, she can’t afford a replacement. I offered a few ideas with regard to agencies that might be able to help with her need for people contact.

That got me thinking about what steps the business community might be able to take to enhance connection of the elderly, shut-in, or medically compromised who don’t get out and about easily to participate in their communities. Access to a computer would fill in a gap, but it shouldn’t be a replacement ‘friend’ when a real, live, breathing one is the ideal.

How many businesses are planning to upgrade their computer systems in the next several months? Would you consider turning over your old systems after reformatting, donating them to those who don’t have a computer? How about raffling them off to raise money for a special community project? Would internet service providers be prepared to offer seniors new to computers a reduced fee for an internet connection? When ease of getting out and about is compromised by frailty or issues with mobility, or lack of transportation, a computer creates a connection, creates a community. The business community has opportunity to take the lead.

Health care professionals, notably doctors and other providers of medical interventions can further contribute to patient wellness by keeping updated lists of various agencies and other social services so as to provide much needed contact information to those who may be in need guidance outside routine medical examinations. Communication is key. Access to health and wellness service providers outside the clinical setting would be a valuable tool for the senior who strives to live safely in his own home for as long as possible. These critical conversations are necessary for all of us, young and old, to maintain healthy and healthful living.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

A daily dose of togetherness is the perfect prescription for young and old

Over medicating in care facilities, and self-medicating, or in some cases, over- self-medicating at home is not new and it’s not confined to the elderly, who are often thought to be forgetful and not ‘checking it twice’. Medication over-use and misuse is sadly, and often tragically a growing problem amongst all age groups.

Thankfully, when it comes to seniors and those of significantly advanced age, clinical staff in many care facilities are addressing the issues head-on and hands-on, examining what patients are taking and why. Very often, the ‘why’ is taken care of right away when drugs are no longer ordered as the condition for which they were required no longer exists. That should beg another question - why, in some cases, was a drug no longer required still being prescribed and dispensed? Along with that is learning how drugs interact with each other and how some drugs offer the same benefit as other drugs and taking away one cuts into ‘duplication of services’. 

The rationale of prescribing drugs that serve only to sedate should be examined more closely via conversations with the patient, as he is able, and anyone attached to him who has regular contact who knows how the patient lives/copes on a day to day basis. Once in assisted care, a lot of the routine tasks normally undertaken by the elderly person are charged to someone else - a nurse or other caregiver. That being so, some of the previously ‘required’ drugs, like those for pain management, may not be indicated. Again, conversations about the ‘why’ of pharmacological intervention  is critical.

In the clinical care setting, there has to be an admission of culpability by hands-on clinicians that some patients are sometimes or even frequently sedated for the convenience of staff. If asked, I’m sure some frontline health care workers will admit to wanting to sedate ‘so-and-so’ ‘because s/he’s too needy, too demanding’, ‘always ringing the nurse’, and so on. 

Many eldercare facilities, with the Planetree model in place, have gone a long way to enhancing quality of life of their residents. Inviting the community to ‘come on in’ has been a huge success. Seniors in care have lost access to a big part of themselves and their identity - the community in which they live. They’re now relegated to a life behind brick walls. Certainly, facilities are  high tech, but they’re still ‘facilities’, and they are sterile no matter how much of ‘home’ is brought in to ‘pretty up’ a room. It’s the ‘people connection’ that will ultimately make a huge difference in the life of an older person in care, even if dementia plays a role in their daily interactions. Wouldn’t it be great if a hug could be pulled out of a bottle and dispensed at will? It’s long been demonstrated that a touch, a hug, a kind word, and a smile go a long way to lifting the mood. Make no mistake, a senior, even those lost in dementia, need all of that and more. Their need for connection doesn’t disappear the moment they pass through the doors of a care facility. In fact, it’s even more critical that they be made not to feel abandoned and forgotten. 

Planners of primary and elementary education are developing programs that include ‘friendly visiting’ at local nursing homes. Young school children are often removed from what goes on with the older persons in their community by virtue of age, certainly, but also because lots of children are still functioning in the ME mode, which is to be expected.  But, at some stage, they have to be guided into more WE activities and what better way to do that than to get them acquainted with serving the community, serving those who have lived and worked in the community for decades. The young meeting the old must be part of the circle of life, to coin a popular phrase. No one should live in isolation at the end of their days. That’s not humane. 

Youngsters, if given the opportunity, would enjoy spending time with older people, hearing their stories, listening to and singing their songs, sharing a meal.

Imagine what the lost art of actually making bread together could accomplish? Dough kneading has been proven to help persons recovering from stroke with the repetitive motion of hands and arms communicating with the brain to restore function. As well, on many levels, persons with dementia will ‘remember when’, if they are given opportunities to ‘get back in the kitchen’. The mutual benefits to a 7 year old and a 70 year old rolling up their sleeves to work together for a few hours a week are many and will create cherished memories. No pills required.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca

But I'm too young to be in a nursing home

There are many variables that contribute to the rising numbers of ‘too young’ men and women in nursing homes, but systems of elder care just aren't ready for those aging with conditions like cerebral palsy, spinal cord injury, autism or Asperger's or diseases like Multiple Sclerosis, Parkinson’s and so on.

Many seniors with since birth or long term disabilities, not yet of the typical nursing home age, have had full and productive lives, attended university, worked in a fulfilling career, married, had children, raised a family — all those things that everyone one else does. We’ve had to work out strategies very early on to accomodate our challenges but with the passage of time it gets more and more exhausting by virtue of the nature of our physical conditions or our mental capacities or our emotional wellness to keep on going. Time for a new plan.

Those of us living with disability who are out in the world on a daily basis doing all those ‘normal’ things have a whole host of issues not shared by our peers with disability who were cared for at home by parents who are now aging; aging out of their ability to keep up with the challenges of looking after a 50 or even a 60 year old son or daughter with disability. For them, when home with Mom and Dad or sibling caregiver is no longer an option, they become part of the nursing home stream. Levels of cognition vary, so that many may not worry or wonder about where they are so long as they have food and drink. Food is the great equaliser.

Nursing homes aren’t always the best choice when social stimulation is what was in place during Mom and Dad’s care. In the nursing home setting, there’s the risk of relegating the profoundly disabled younger person into a bed  — it’s convenient, and they’re safe. But are they really? 

If we’re going to focus on humanity and humaneness, we need more communities/homes modeled after L’Arche, founded in 1964, or The Boston Home, in Boston, Massachusetts, founded in 1881.

Today, in the Boston Home, politically correct terminology replaces the Dickensian labels, and the programs and services offered are more in keeping with inclusion and treating individuals as real people with real feelings, not just as patients to be ‘cared for’, in the clinical/medical sense. 

Today, the home offers long-term to end of life care for adults with a range of disabling conditions that preclude independent living. The average age of residents is 58 and the residents are not defined by their disabilities. They’re people first.

Likewise, the L'Arche Community is another way for adults with disabilities to be safe and cared for in environments that meet their daily needs. Founded by Jean Vanier, a renowned philosopher, theologian and humanitarian, L’Arche has, with compassionate care, served the needs of the intellectually disabled for decades. 

The Boston Home and L’Arche are but two examples of alternatives to long term care of the young and middle-aged and aging adults with disability, but there needs to be more such places and sufficient staff and volunteers to keep them going, especially given the reality that our senior population is growing in number and part of that population have needs above and beyond the typical aging person.

Imagine being 25 years old living with cerebral palsy and realising that the only place for you to live is a nursing home because it’s architecturally accessible and close to services you utilise on a daily basis - like going to university. 

In nursing homes there are agitated patients with self-control issues, so a profoundly physically challenged person with cerebral palsy cannot defend herself against bites and hair pulling and punching. There has to be something else. There needs to be something else.

Even if the care and services of the home are perfect, there is a psychological toll to being decades younger than your peers. Unlike older residents, a young person may not be as stimulated with bingo games and crossword puzzles. Another missing link is meaningful conversation with peers. Then there’s the relationship experience with a potential romantic interest. Access to those quality of life necessities for the younger set are not easily found in a nursing home environment.

For me, though, adherence to scheduled meals would be a problem as would be a significant portion of the menu offerings. I would not be a good nursing home candidate before the age of 90! Perhaps if I was appointed social director or menu planner, I might survive. I’m all about the food!

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca 

I'm living with a 'sundowner' dog

Mr. Digby, my 14 year old Australian Silky Terrier housemate is a ‘sundowner dog’; in clinical terms, he suffers from canine cognitive disorder though episodes of confusion are infrequent at this point. He could be disoriented for just minutes or for a few hours (more than 2) at a time. He’s more likely to become confused as darkness settles on the day — not unlike what happens to elderly humans.

Behavior changes occurring just before dark is called Sundowner's Syndrome or sundowning.Dogs, as well as seniors with Alzheimer’s or other forms of dementia may be more agitated and confused. I find that to be the case with my senior canine companion who is noticeably disoriented as the sun goes down. His demeanor adjusts when the lights are turned up —he becomes more animated and aware. As to the elderly loved one, light up their lives to improve their mood. As well, a little night music may lessen the impact of agitation.

Well illuminated spaces so that the individual can safely move about minimize the impact of Sundowner’s Syndrome; keep walking/travelling routes clear — from kitchen to dining room to living room to bedroom, and so on. Non-slip flooring and limited or no use of scatter rugs is very helpful. 

Those affected may also "shadow" their caregivers, following them around and doing everything they do, asking questions over and over or interrupt conversations with someone else. Sometimes there is a loss of full language abilities and abstract thoughts may become especially difficult to comprehend. Very often, an elderly person can be settled with the offer of a familiar finger food — a successful way of redirecting fixated or fixating behaviour.

Mr. Digby’s shadowing doesn’t seem particularly purposeful until I pause at  his ‘food cupboard’. If I stop there for even a moment, he’s perked up and alert to the possibility that a treat is forthcoming. It usually is. Once he’s partaken, he seems satisfied that that’s all there is and makes his way to one of his many sleeping spots, but not before a bit of play time. He still has a great interest in his toys.

Sundowning causes a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions. It can also lead to pacing or wandering. To be clear, it’s not a disease, but a group of symptoms that occur at a specific time of the day that may affect people with dementia, such as Alzheimer's disease. Not by nature an ill-tempered dog, Mr. Digby’s history of previous abuse contributes to revisiting past hurts. Humans will often squash down traumas in order to cope with the present; the same is true for dogs and other animals. They do remember but positive life experiences post-abuse turns things around until dementia moments grab them. Interacting, both with humans and with aging pets in a calm, even voice is most helpful.

Some medical professionals believe that the syndrome is an accumulation of all of the sensory stimulation from the day that becomes overwhelming and causes stress. Others speculate that it is caused by hormonal imbalances that occur at night. Another theory suggests that the onset of symptoms at night is simply due to fatigue, and others believe it has to do with the anxiety caused by the inability to see as well in the dark.

In many respects, with regard to patterns of behaviour, dementia in my dog is not unlike that in a human. He’s more alert after a nap. Up and about for several hours through the day, he tends to go to his basket when I take a break to watch a movie, though he’s always keen to intrude on my meals. In vet terms, he’s considered geriatric and like his human counterparts he does well when his routine isn’t disrupted or altered. Sometimes, changes are necessary, so it’s important to ease the transition.

Although you may not be able to stop it completely, you can take steps to help manage this challenging time of day so you both sleep better and are less tired during the day. Keep the elder’s medical care team apprised of what is being done to cope with Sundowner’s Syndrome. What you have found helps in your situation may help another family experiencing similar issues.

Maintaining a routine tends to alleviate sundowning anxiety. Putting on pajamas can be helpful triggers that the day is winding down — follow with a bedtime snack. Going to bed with hunger pangs interferes with the relaxation required for sleep.

After his evening constitutional, Mr. Digby has a biscuit and is escorted to the bedroom to slumber on his blanket on top of my bed. I turn on the television so he has a sense of ‘someone’ in the room, so he’s less likely to get up and wander. I’m then able to leave him on his own to enjoy a movie in the tv room without interruption.

Life is good.

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca