Listening to and learning from two senior community volunteers

In this newsletter, we profile two FLA OHT volunteers who speak about their experiences as seniors in our community, actively engaged and using our health and wellness systems. We spoke with Nona Mariotti, who lives in rural Frontenac County and Helen Cooper, who lives in the city of Kingston. We heard from both about their views on aging, programs and activities for seniors in the region and what motivated them to get involved with the FLA OHT.

A little bit about Nona Mariotti, in her own words.

I was born in Kingston 78 years ago but spent much of my adult life in Toronto, raising three children, building a career in education and then retiring as an elementary school principal. One of my grandmothers used to say to me, “the Lord gave you two hands Nona: one to reach out to pull yourself forward, and one to reach back and help someone to move along.”

Little did I know that in my elderly years, I would be called upon to do just this for my husband of 58 years. Travelling this highway together from a Parkinson’s misdiagnosis to the Normal Pressure Hydrocephalus [with frontal lobe dementia by this time] has been a learning curve for both of us, our adult children, grandchildren and friends.

Thirteen years ago, my husband and I were thrown into a struggling health system completely unfamiliar to us. Generally, we found ‘age’ became predominately part of the equation expressed by most in the system despite the fact we were both physically active seniors who were still curling, golfing, biking, skiing [downhill and cross country], snowshoeing and swimming. Over time my husband’s medical doctors’ team went from six down to one, and that is our family doctor who has supported us, helped us reach a diagnosis and plan the last four-plus years on our own.

My experience as being a caregiver

My experiences as a caregiver are in constant change with a variety of challenges. Before my husband became wheelchair-bound, incontinent, and nonverbal, we enjoyed the St. Elizabeth weekly exercises for Parkinson’s. We immersed ourselves in Southern Frontenac Community Services for exercise classes, cultural activities, music and even fundraising. My husband’s needs eventually required more help and were serviced at a day program for seniors at the Grace Centre. This was good for him and me as it gave me time to look after my own needs. We even maintained [until Jan 2020] our Mirvish [members for 30 + years] theater tickets in Toronto. Our love of theatre and music and a chance to visit with friends in Toronto were highly motivational for us both.

Looking for help and support

Research tells us that we seniors want to stay in our homes, and other countries’ health systems have made this possible. If that means we require home support as caregivers, we should not have to fight for those services, which at times we almost have to beg for and still do not get enough quality help. Caregiving, for the most part, is a very private intrusion on your body, lifestyle, and everyday functioning. My Italian, 80-year-old husband had a Personal Support Worker (PSW) tell him that he was a good boy all the time she was here. The inconsistency of staff and time frames or no-shows make this experience  unhealthy for anyone experiencing cognitive problems.

The format used for home care just exacerbates the caregiver’s problems, as well as those of the person needing care. Who wants multiple people washing your body, cleaning private parts etc.? Having different people every day means I must instruct and help them as many are unable to use hoists or certain equipment. I am fortunate that I can seek out people and help but there are many who cannot. Yes, I chose to live in a rural area, but I still pay taxes and support the health-care system.

Living rurally and aging at home

We all have been told loneliness can occur in a crowd and it all becomes real when one must face the consequences of something physically debilitating to oneself or a family member without family physically nearby. However, the cohesiveness of neighbors’ support in rural settings provides the framework for dealing with chronic loneliness. Church and school communities listen to the needs of their congregations, reaching out to them by offering not just religious and learning events, but also yoga and exercise classes, musical experiences, as well as cross-generational experiences. Again, these communities also network with other services to provide eclectic activities that help all to age well at home.

Sometimes loneliness can receive the band-aid of having a daily visit of a Personal Support Worker to assist care partners with their task of physically caring for their family member. PSWs are very difficult to obtain to consistently visit homes in rural areas. Going beyond big city limits such as Kingston tends to frighten many wonderful PSWs because it requires additional driving and time. This often requires them to be in a rush and work overtime. Unless one can obtain private services [and they are difficult to find], there is a lack of consistency of personnel, and this has unbelievable repercussions on the client. We have had the experience of 15 different PSWs in 17 timeslots.

Aging with technology

I suppose one cannot address aging without recognizing our attempts to learn and keep abreast of technology. Yes, cell phones, iPads and computers have and continue to create high learning curves for everyone, but especially for seniors. Regretfully, for too many seniors in some rural areas' their attempts to climb on board with technology can’t happen because of a lack of service providers in the area. All too often if they require internet service the monetary cost is just too steep for those seniors to handle with their meagre fixed income.  This prevents many people from interacting with their programs and families or becoming involved with educational and support courses that are online.

Why I participate and share my experiences with the FLA OHT

I joined the FLA OHT committees hoping that I could ensure the committee knows what is happening and what is not happening rurally. We seniors need help.

This 14-year evolution has had me reach out to volunteer to be on committees involved with the revision of our health-care system. I know what it is like to speak the language, have a monetary safety net, a supportive family, a great family doctor, and my own health. There are many out here in rural Frontenac without all of these things and more. I feel my limited experience can help pull them forward by monitoring and addressing issues that arise.

A little bit about Helen Cooper, in her own words

First of all, I recoil from the descriptor of myself as a “senior”. I am now in my seventies but still think that I haven’t quite reached that status yet. I suggest there is an unfortunate connotation for that word in our society. It is frequently used patronizingly – that services must be offered to us through decisions made by others younger than us who know what’s best for us, that we deserve exceptional kudos for continuing to contribute to society in ways we have always considered our responsibility. In reflecting on the use of this term I am really addressing pervasive agism.

I got elected to Kingston City Council in 1980 as a young mother of two daughters. I sought relevance to the world around me through volunteer community activity with an activist edge – saving Kingston’s historic buildings, revitalizing the downtown core, and following the evolution of the land use planning regime – so a run for Council was a logical next step. I ran successfully for mayor in 1988. My last job was as a manager for Adult Development Services in what was then the Ministry of Community and Social Services. When I retired, an old and dear friend recruited me for the board of Oasis Senior Supportive Services Inc. It has been a highly educational experience learning about the ingredients for aging well.

Why I volunteer and share my experiences with the FLA OHT

Although I have been a caregiver for members of my family in the past that is not currently the case for me. I am, thus, quite limited in being able to speak to current experience within the health-care system. Where my current interest lies is in broadening the scope of what we traditionally think of as health care by developing and promoting programs to support the primary prevention of illness and disability, particularly as we all age.

More and more research is revealing that the single greatest determinant of continuing good health is the maintenance of strong positive interpersonal relationships. Addressing loneliness and isolation is important for people of all ages. This becomes even more critical for older people who are that much more physically and mentally vulnerable. My personal goal in joining the FLA OHT is to advance our understanding of these factors in the development of a much more holistic and integrated health-care system.

What has impressed me most of all is the dedication of the people in the Aging Well at Home Working Group to improve the lives of the people they serve. The people who work in home care and community services work tirelessly. They crave the opportunity for greater connection among their service offerings. When they achieve this, often overcoming almost insurmountable bureaucratic hurdles, their patients and clients get the services they need. Citizens are often not in a position to be aware of the often heroic efforts that underly the smooth and appropriate service they are receiving. It’s always unfortunate that most publicity is directed to events where things don’t go smoothly.

Encouraging new ways of thinking about aging and creating better-connected age-friendly communities

Older adults themselves are, more than anyone else, advancing the cause of new ways of thinking about aging. The baby boom generation has now reached the mid-‘70s. Because Canada experienced one of the world’s longest and largest baby booms, that generation has been quite used to influencing societal trends for decades. Advocates are increasingly vocal about how they wish to approach old age. A very high percentage are opposed to a future that includes institutional long-term care. Examples of other countries such as Denmark and Japan are illustrating that this is possible.

Municipalities are developing their role as age-friendly communities. This is a comprehensive concept not just addressing health-care related services but also revisiting zoning by-laws and public infrastructure to encourage appropriate housing forms integrated with walkability to essential everyday community services and businesses.

Programs and services geared towards improving the well-being of older adults

The AVOID Frailty website lists a huge variety of community resources of interest to older adults and geared towards improving their well-being – a prime example of how the community can work together effectively, share resources and avoid duplicating efforts.

For people at any age to lose a sense of control over their own lives is devastating leading to very poor mental and physical health. For people in equity-deserving groups this is often greatly compounded by misunderstanding and discrimination. I suggest we must all address preconceptions about the people we are working to support to give them the opportunity to lead the most fulfilling lives they can.