It happens sometimes that people are overlooked. They shouldn’t be but they are. I was looking at some old photos the other day and it occurred to me that in my last blog post I unintentionally neglected another centenarian, a remarkable woman who just happens to be my daughters’ great, great aunt (my ex-wife’s great aunt to be precise.) So it is that Jean Madill joins Jemima (‘Aunt ‘Mime) Wilson, Mary Anne Scoles and Mary Armitage as centenarians I have known. Jean was not only a contemporary of these three women but she shared that same four-mile geographic proximity to Altamont, Manitoba. The probabilities of a convergence of people (all women in this case) who live to be 100 or more years old within the same locale must be pushing the boundaries of something more than mere coincidence. If living to be 100 years old is getting to be “old hat,” then I would like my old hat to join that select grouping in another 33 years! It seems a little premature to celebrate that occasion just yet given that I am a Person with Parkinson’s (PwP) and have other health problems… but you never know.
This post has taken me eons to write. I thought it was going to be a quick exercise to correct an oversight but it has turned out to be an excursion into social and health policy on care and care giving for those with chronic conditions. Many of these thoughts were sparked in a round about way by memories of Jean Madill, some were honed with the assistance of my friend Selma Garten and some were rekindled in recent days with the passing of my cousin, Bob Marshall, after a long battle with Parkinson’s and dementia.
But I have to start somewhere so let me give you the lowdown on Jean Madill and how her story relates to the importance of family, ideology and public policy in determining how and where we live out our “golden years.”
Born: December 14, 1905 in Altamont, Manitoba
Died: November 6, 2006 in Notre Dame de Lourdes, Manitoba (100 years 325 days.)
Father: R. W. (Wes) Madill. Born February 5, 1871 in Ontario. Died: July 3, 1944 in Altamont
Mother: Jane Elizabeth (née Maloney) Madill. Died: June 15, 1955.
Jean Madill (L.) Sadie Wilson (R.) In Sadie’s grocery store. Photo: S.Marshall c. 1982
Why have I been thinking about Jean? Is it that she joined that select club of being a woman centenarian who lived in Altamont? Partly I guess, but that is not the whole of it. Jean was a unique individual who lived a unique life in unique circumstances. To be blunt, she was a character who would have had to be invented if she did not exist in real life. She deserves to be accorded a special place in the recorded annals of Altamont, Manitoba. Unfortunately though, I don’t find much of her in those records. Maybe I am not looking in the right annals?
Please bear with me while I think this through a bit. You see, I knew Jean mostly during the 25 year period after she turned 50 years of age. Minor arithmetic will tell you that while I am able to relay some of my own personal memories and thoughts from the time period I knew her best, I can only touch indirectly upon her first 50 years and her final 25 years. Still, Jean’s life has me thinking about care for the elderly, disabled, mentally ill and those with chronic health problems. She provides a springboard for a discussion about the ideology, values, and the evolution in treatment for those with mental health problems and the pressing need in today’s society for care of the elderly with or without chronic health complications. Prior to retirement my job required me to be knowledgeable about health policy and the politics of health care. Now, I am a Person with Parkinson’s (PwP) and these matters are much more in my face in a very personal way.
No memories are insignificant
I feel it is only fair that you should know that my recollections of Jean and others have been processed, filtered and stored in my cerebral cortex waiting for the appropriate stimuli to unlock them. I am not certain how memories are for others but mine do not flow over my brain like a smooth, soothing stream of healing water. No, any particular memory making its way through my brain crashes against the folds of my cerebral cortex and against other memories. The energy released from these collisions is what I call ‘gray energy’ inasmuch as it emanates from the intersection of the gray matter of my brain and the gray areas in my memory. This ‘gray’ energy has an irradiance and illuminance enabling the “mind’s eye” to detect subliminal images within the darkest recesses of the cerebral cortex. [Sorry to disappoint you but ‘gray energy’ in this context has nothing to do with the burning of fossil fuels, and ‘subliminal’ has nothing to do with whether you are unknowingly being tempted to buy popcorn at the concession in the movie theater.]
Memories are critical to how I interpret the world and releasing them is sometimes a curious procedure. Although the process I outline above seems rather ad hoc and perhaps chaotic, I don’t believe that ‘Chaos Theory’ plays any role in the formulation of my beliefs i.e., in my brain there is no equivalent of a butterfly flapping its wings in Brazil, creating (or preventing) a hurricane in Texas. While my heart may flutter from time to time for good reason (perhaps romantic, perhaps physiological) and my dopamine deprived brain will challenge my equilibrium, my perception of the world remains firmly rooted in whether ‘facts’ and memories line up. You see, I don’t believe that my memories, even seemingly insignificant ones, are ad hoc. Memories surface in a never ending human quest to understand and explain our existence, and in our innate drive to improve our lives (not just individually but also collectively.)
The more memories of Jean Madill rise to the surface, the more I realize that these particular images lead to substantive questions of social policy and social change. How does society care for those who have chronic and long term illnesses? Who has the financial resources to meet the level of care required – the state, institutions, communities, families? Who has the capacity to ensure that the burden of care giving does not weaken and destroy the structure of support around those who need care? Can a rose with a cloying name assist in understanding the values of a caring society? What does the stigma of mental illness have to do with anything? Some of these questions may appear to be unconnected but often the circuitous ‘milk run’ is the best way to see the incredible beauty of the countryside … or if you love train travel you will have the advantage of observing the backbone or the back side (some say backside) of every community.
Altamont 1905 Photo from Memories of Lorne 1880 – 1980.
The photo at the left shows the main street of Altamont in 1905, the year Jean Madill was born. Only the United Church building (white A frame building at left) remains today. The train tracks cross the photo at the bottom.
Children of the 1950s
I will begin my journey with a brief look at children in 1950 rural Manitoba. When I was a child we would tease Jean Madill. I don’t recall it being malicious teasing and there were many occasions when I remember Jean laughing at a trick or two she played on us. Still, you know how seven and eight year old boys behave sometimes – fuelled by a mixture of underdeveloped (not undeveloped) testosterone, a surfeit of bravado, boundless mostly misdirected and misguided energy, powered by a brain roughly equivalent to that of a chimpanzee, making for unpredictable and borderline acceptable social behaviour.
In the 1950s these chimpanzees … er … children were set loose to run unsupervised up and down the main street in Altamont on a Saturday night, the night when both farm and town families ventured into the stores to shop for groceries, get a haircut, skate or curl in winter, visit with friends and those acquaintances who lived farther away, and for the men to disappear into the Altamont Hotel slaking their chapped lips and dusty Souls with a few drafts of beer, away from the prying eyes of wives and other busy bodies. [Hey, I am just calling it like it was.] In other words, the adults were busy and the chimps … er … children had slipped their minders. A friend of mine used to categorize children as being “rug rats” until they could run and climb at which point they became “yard apes” or “street monkeys.” I guess we were the latter.
Sometimes the street monkeys would hurl taunts at each other and tease anyone who was different or appeared vulnerable. Animal behaviours can rise to the surface in uncontrolled situations. Jean Madill was one of the vulnerable and we (I am admitting my culpability here) would race past her chanting
Jean, Jean made a machine
Joe, Joe, made it go
Art, Art blew a fart
And blew the whole damn machine apart.
I guess you have to be in Grade 2 or 3 to appreciate how close this is to genius poetry for a seven-year old … well, a seven-year-old boy anyway. Obviously, this little rhyme has been around since the 1950’s as I personally recall using it during those years. It was reprised with widespread attention in 1987 as “Zed’s Poem” in Police Academy 4: Citizens on Patrol. However, the rhyme is a variation of this older version originating in the 1920s.
Gene, Gene, made a machine
Joe, Joe, made it go
Frank, Frank, turned the crank
His mother came and gave him a spank
Sent him over the river bank. (See note 1)
Of course, as we were chanting it directly to our Jean Madill, we always thought the rhyme referred to “Jean, Jean” and not “Gene, Gene.”
Mental illness or mental health?
Why were we teasing Jean Madill? That is a very good question with a not very good answer, I am afraid. Today, we would probably say that Jean had a mental illness or disability. It may even have a name although I don’t know that it does. In the 1950s such conditions were described in common parlance as crazy, loony tunes, nuts, crackers, whacko, or some other not very helpful appellate. Not very adult I know, but at what age does adulthood begin? [When do street monkeys become sentient human beings?] As a corollary, is it too much to expect children to be adult? Whatever the answer, it is never too much to ask adults to be adult and the fact that many adults also said these same insensitive things is telling of both the “adults” and the times. Very often, people of that day did not address mental illness openly or compassionately and it was almost impossible to escape the stigma attached to it.
Looking back on it, I do sometimes think that maybe we children were a slight bit more adult than I give us credit for being. To the best of my recollection, I never heard children say Jean was a “retard,” an “imbecile,” a “moron,” an “idiot,” or a “lunatic.“ Ironically, these were names we reserved for our close friends or those with whom we wanted to be friends, but weren’t. It turns out that sociologists and criminologists studying deviant behaviour and government social policy experts and administrators had already reserved these names for use in their professional studies. Individuals were placed in “lunatic asylums” or “insane asylums” because they were “criminals,” “dangerous,” “maniacs“ or better yet, all three. I cannot imagine that any of these descriptors were seriously applied to Jean Madill. I certainly never saw her this way.
Most likely, we did not call Jean those names because Jean, 45 years older than we were, was not in our cohort. She was of our parents’ and grandparents’ generations. We knew she was “different” but none of us perceived her as a threat. She was a benevolent figure from another dimension in our dramatis personae. I have to be careful here not to leave the impression that we somehow were “enlightened” and should be applauded. Save your applause. Consciously we weren’t but underneath our chimp behaviour lay a child’s inherent trust – not always to be relied upon but in this case a good barometer.
I have not read extensively on the subject of mental health but what I have read indicates that “mental health” as a concept was not in vogue at the turn of the 20th Century. Put another way, mental illness had not yet been re-branded as mental health. In fact, the first Mental Health Week in Canada was declared only in 1951, a full 46 years after Jean Madill was born. At the time Jean entered this world,radio was still two decades away from being the latest craze and the widespread use and ownership of television sets was even further away. Social media campaigns such as Bell Let’s Talk Day were unheard of and it would be almost fifty years after the first Mental Health Week before the Internet and social media would provide a platform in the struggle to end the stigma of mental illness; to highlight the need for access to care and services; to provide guidance for workplace mental health initiatives; to fund research on treatments and cures; and to support community organizations in their local programs and services.
The 2016 Bell Let’s Talk Days raised an astonishing $6,295,764.75 from 125,915,295 calls, texts, tweets and shares. Since 2010, the total contribution is approaching $100,000,000 to mental health programs. We should be encouraged by the support this campaign has received but we have to wonder why, more than 110 years after Jean Madill was born, the conversation about mental health remains so difficult and illusive.
The language of mental health
As a child the most charitable thing I recall hearing in relation to Jean Madill’s situation is that she had been studying to be a nurse when she had a “nervous breakdown” (see Note 2.) I was eight years old and I was not exactly sure what this phrase meant. I am not sure I know even now. I do know that the term is not a medical one and it does not refer to a specific condition. In general, it describes a period of stress (usually temporary) where a person is not able to function normally in daily life. Everything just becomes too overwhelming. (See Note 3)
What is mental health anyway? About 30 years ago some friends were visiting with their precocious five-year-old daughter. Let’s call her Abigail. Abigail and I had been dispatched to the corner store for some milk and as we walked she started a rather serious conversation about how she was feeling. She suddenly stopped walking, stood back, put her hands on her hips, looked me straight in the eye and announced quite pointedly, “I have had several mental breakdowns, you know.” It took me by surprise and I snorted a little laugh before recovering quickly to say sympathetically, “That’s too bad but I understand that you grow out of them.” Almost immediately she switched to another subject and nothing more was said about her breakdowns. When I relayed this story to her parents later that evening they laughed and explained that “temper tantrums” in their family are referred to as “mental breakdowns.” It seemed reasonable at the time but now it has me wondering where temper tantrums fit in the typologies of disorders in relation to depression or anxiety, and whether ‘tantrums’ could ever constitute an inability to function in daily life, or at least be a symptom of mental illness, an indicator of things to come.
I can only imagine that my own parents and other family members must have wondered about my early childhood behaviour at times. Some of my very earliest memories involve throwing temper tantrums when I didn’t get my way. I recall one occasion when I threw a huge tantrum, a performance worthy of an Oscar – full out crying/wailing, foot stomping, yelling, and screaming. I don’t recall pitching anything but I may have. To make matters worse we were at my aunt and uncle’s house and I am certain my parents were mortified by my behaviour. I recall being banished to a quiet room from which I escaped to hide in the car because my parents were going to go into the city and weren’t going to take me! The forgoing “drama”unfolded but I feel compelled to reserve more specific details for another blog posting – or maybe for the next time I have an opportunity to occupy a therapist’s couch!
The PD Gardener c. 1952 Photo: R. B. Marshall
My point is that the language of mental illness and mental health is tricky and in Jean’s case categorizing the problem as a “nervous breakdown” seemed carefully designed to project 1) an impression that Jean had been “normal” but had some sort of mental collapse from which she was not able to recover; 2) that she was intelligent and studying to take on a respected and important professional career; and 3) she was to be treated with kindness and respect. Aside from some teasing and mild harassment by unthinking, uncaring, and unaware chimpanzees/children, I perceive this to be the case but I am certain there were undercurrents through the community that were not as innocuous. You would think that something unsavoury had to have happened in the 100 years of Jean’s life, but if it did, I don’t know what it was.
The changing landscape of mental health
When the Manitoba Asylum at Selkirk, Manitoba was built in 1886, it was the only facility on the Canadian prairies with separate facilities to care for the mentally ill. It shouldn’t surprise anyone that overcrowding was an issue almost immediately. As a result, a “Home for Incurables” was established in Portage La Prairie and in 1891 a second asylum opened in Brandon. By 1914 there were about 1,500 patients in the three Manitoba facilities combined. While it is true that more attention was being given to mental illness, care for patients was not well understood and both psychiatry and psychiatric nursing in Manitoba were still at rudimentary stages. The nurses’ residence did not open at the Selkirk Hospital until 1926 and it wasn’t until 1960 that Psychiatric Nursing was established as a separate professional entity in the province. But by 1950 the number of patients in psychiatric hospitals in Canada ballooned to over 66,000.
The distinction between a mental health concern and a mental illness [a mental health concern becomes a mental illness when ongoing signs and symptoms cause frequent stress and affect your ability to function, see Note 4] was not well understood nor were the wide variety of symptoms and behaviours. People did seem to understand that stress, a traumatic life experience, an abusive relationship, brain damage, chronic medical conditions, or drug an alcohol abuse might cause mental illness. Even so, there was often disagreement on treatments and availability of treatment was not guaranteed.
Have mental health matters become more clear in a present day world? I am not sure, as there is a bewildering array of concepts joining the aforementioned “nervous breakdown” and “mental breakdown,” challenging the layperson to keep abreast. Just what are the differences and similarities among concepts such as mental illness, mental disability, mental impairments, mental retardation, learning disability, psychiatric disability, intellectual disability, anxiety disorder, mood disorder, depressive disorder, affective disorder, seasonal affective disorder (SAD), schizophrenia disorder, dysthymia, obsessive compulsive disorder, post-traumatic stress disorder, to name a few? I do understand that specificity in definition is required to advance science but sometimes in the interests of awareness, simplicity works. Mental illness comes in many shades and shapes and when a mental illness interferes with the performance of major life activities, such as learning, working and communicating, etc. it is a disability. (See Note 5)
So it was that Jean Madill was a young adult in the 1920s with a mental illness/disability. Available facilities for the treatment and care of mental illnesses were nascent and poorly equipped to classify patients, never mind actually treat them.
The changes in the name from “Goal” (sic) [I assume it should be Gaol,] to “Manitoba Asylum”, to “Selkirk Insane Hospital” , to “Selkirk Hospital for Mental Diseases”, to “Selkirk Mental Health Centre”, reflect the changes in attitude, philosophy and function that mark the course of progress in the care and treatment of the mentally ill. (See Note 6)
These name changes coincide with a policy to shift care from institutions to community in the 1950s in an attempt to eliminate or at least soften the negative effects of institutions. New and better medications, approaches that stressed rehabilitation, and a program of foster care for children during the 1950s and 1960s, dramatically reduced patient populations in institutions. Institutions did however pick up the pieces when families and/or communities failed or where the patient was not suitable for placement in the community.
Genevieve Evangeline (Eva) Marshall Photo credit and date unknown
[Interestingly, my Aunt Eva Marshall played a key role in many children’s lives as a foster parent during this time period. I recall meeting several of her foster children when I visited with my cousins during summers at the Brandon Experimental Farm. While there was some “drama” from time to time, I do not recall any interaction as being upsetting … or uplifting for that matter. It just was.]
Two cases from the mental hospital grounds: Jessica and the King of Prince Edward Island
In the late 60s and early 70s, I played hockey in Brandon and Selkirk which coincidentally were the locations of mental hospitals in Manitoba. In Brandon my teammates and I would often go to the grounds of the mental hospital to play soccer, Frisbee, baseball or just hang out on nice warm spring days. Often, we would encounter staff and “inmates” as we called them from the hospital. I was totally ignorant about almost every dimension of mental illness. I recall being very surprised to encounter the teenage granddaughter (let’s call her Jessica) of some people I knew. I met Jessica on several previous occasions at her grandparents’ house. Apparently she was well known to my friends as someone who was being treated as an outpatient at the Hospital and liked to engage in sex talk.
The few times I saw Jessica on the Hospital grounds we were with our respective groups of friends – all girls in her group, all guys in mine. I recall the encounters as hyper – dramatic, foul – mouthed displays of aggression graphically punctuated with shouted litanies of various sex acts and behaviours. It was not the innocent, humorous and flirtatious banter between teenage girls and boys intent on striking up friendships and romances or even temporary sexual dalliances. Jessica and her gang never escaped the collective persona of a slut. What was the collective persona of the gang I was with, you ask? Good question. We were probably closest to a tormentor, willingly providing the stimuli, the mean teasing, and the suggestive contexts for the sluts to hurl the filth that we wanted to hear. I don’t know if we took Jessica’s gang down to our level or vice-versa but the fact is that we were both at the same low-level level – so far down that no lower level could be achieved without physical contact. But to my knowledge, no relationships, sexual or otherwise, ever developed between members of our groups. It seems weird but we always parted somewhat amicably as our ‘fuck you’ and ‘fuck off’ goodbyes and other creative invective hurled in both directions were pinned in the air like corsages and boutonniere to be cherished forever as keepsakes.
I was accustomed to crude behaviour as it is the norm among young hockey players but I have to say that these experiences with Jessica and her friends rattled me a little. Don’t get me wrong, I wasn’t a saint by any means but I was fresh off the farm so to speak and had never encountered such explicit behaviour in girls. I suppose Jessica might have been concerned that I would rat her out to her grandparents but I doubt that this was a major issue. She needn’t have been concerned anyway as I didn’t know them well enough to broach this topic, and I can’t imagine what I would have said to her grandparents that would have been helpful to keep the conversation going. “Oh by the way, I saw Jessica on Saturday and she asked me to …. “ I don’t think so! Besides, it has taken 50 years for me to even let it rise to the surface. I never saw Jessica after those few encounters that summer.
In Selkirk, several of my friends worked at the Selkirk Mental Hospital. Sometimes a few of us would go to the manicured green spaces of the Hospital to beat the summer heat. Often we would encounter a friend who was on the grounds working with a patient or two. I don’t have very fond memories of those occasions. From my perspective there was always an element of the unknown, a concern for safety, and there was an undercurrent of ridicule and nastiness of staff and visitors towards patients that sometimes surfaced in ways that were seemingly innocuous, but were anything but innocuous. At the time we thought it was funny to ask one particular patient repeatedly, “What is your name?” And when the patient answered just as predictably and repeatedly, “The King of Prince Edward Island,” we would laugh uproariously. Like small children we, including the patient it seems, never grew weary from the repetition and only stopped when the orderly ordered us to stop. While hospital staff was complicit in these exchanges, to their credit they were the ones who knew to draw the line when our games became too harassing.
I am not sure if either the Selkirk or Brandon Hospitals were options for the Madill family in their search for treatment for Jean. I would be surprised if there were not inquiries and/or consultations. However, I am not privy to this information and while I am interested from both an academic and a personal perspective, these details are not germane to the story I recount today. Suffice to say that by the mid 20th century the paradigm for the delivery of mental health programing had shifted from institutions toward community and family.
The importance of family
The Madills had roots deep in the community going back to the early 1890s. R.W. “Wes” Madill married Jane Elizabeth Maloney in 1894 and went to Altamont from Austin, Manitoba to manage a retail store owned by his uncle John Sampson. Wes would buy the business in 1902 and run it for the next 28 years. On the Maloney family side, Elizabeth’s father, Henry, came to Altamont in 1890 and was Postmaster from 1907 – 1920. Prominent in business and public service, both families were well known and respected throughout the community. [Coincidentally, my own father was the Postmaster from 1955 – 1972.]
Those deep roots and the relationships that grew from them would cement Jean’s path in the future. In essence, the family pulled its own ‘safety net’ tightly around Jean such that she was able to live her long life in relative dignity in the same small community where she was born – a claim few others can make.
Jean had three brothers. Clifford married Jessie Skinner; Gordon married Fanny Acaster; and her twin brother Ken married Elsie Snowdon. Her two sisters were Mabel, married to Jim Dean, and Grace who married Jack Shellard. Cliff and Gordon continued to live locally and I recall the others were in contact regularly. Over the years these siblings, their partners, extended families, and other community members provided a safe haven for Jean – one that permitted her not just ‘to survive’ or ‘to exist’ but ‘to live’ with some form of dignity.
To be blunt, providing care for someone with a long term illness requires considerable financial resources irrespective of whether the care is provided in an institution, the community or by the family. My understanding is that one source of financial support for Jean was her parent’s estate. Her father, Wes Madill, died July 3, 1944 at age 73 when Jean was 38 years old and she was 49 when her mother, Jane Maloney Madill, died on June 15, 1955. No one could have guessed that Jean would live to be almost 101 years old, outliving her immediate family members and most of her contemporaries in the community.
The Madill estate included some income-generating property such as the “Madill Block” established on Altamont’s Main Street at the turn the 20th century. Unfortunately the store was destroyed by fire early in the morning of December 3, 1905. The loss of the store and stock was valued at $10,000 and was insured for only $6,700 but Wes continued to operate the store out of the Maccabbee Hall [another interesting topic for a future blog post] until 1907 when a new building was completed. The risk of fire must have been very high in these communities [I plan to explore this theme of fire in future blog posts] as on a Sunday morning in May 1923 fire levelled Madill’s store once again. And, once again Wes Madill operated the store from another property until he could rebuild. The business was finally sold to George Bishop in 1930 but I believe the Madill family retained ownership of the Block.
Photo showing the Madill Block in early 1950s. Fire would soon destroy the hardware store at the left. Photo: unknown
In the 1950s the Madill Block had two competing grocery stores coexisting side by side on the street level. (I remember my dad telling me that we should patronize each store to an approximate equal amount.) There were also three or four apartments on the second floor. The Block has specific memories for most children of my generation. It certainly does for me. The very first time I watched television was in Orville Bishop’s apartment in the Block. Orville was a bachelor farmer who moved to town and he owned the first and only TV in the community at the time. Along with his farming and bridge playing buddies, he watched hockey on Saturday nights but on Saturday afternoons, Orville’s apartment became the local cinema as his door was open for us to watch Horse Opera. We huddled around the small black and white screen where Roy Rogers, Gene Autry, Zorro, Rin Tin Tin, Wild Bill Hickok, Hopalong Cassidy, Wyatt Earp, The Lone Ranger, Maverick, My Friend Flicka, The Rifleman, Texas Rangers, The Last of the Mohicans, and others were central to our socialization into a culture where good guys wore white hats and bad guys wore black hats – and women played subordinate roles …. and everyone used guns. How did we escape this experience to become enlightened adults? … or did we? Another topic for another day …. but right now we should return to the key figure in this story.
‘Stick it where?’ money
Jean Madill also lived in an apartment in the Block for quite some time; her small quarters piled high with papers and magazines. She subscribed to one of the Winnipeg papers – I am not sure which one but it was clear later in my life that if you were a Conservative you subscribed to the Winnipeg Free Press and if you were a Liberal you subscribed to the Winnipeg Tribune and maybe the Star Weekly. If you were NDP, you subscribed to the Toronto Star Weekly, and maybe the Tribune. I remember my friend R.W. and I reviewing the results of the Altamont poll after an election. We discovered that three people in the poll had voted NDP. We knew who two of them were but couldn’t place a name beside the third NDP vote. I think I know who it was but without absolute proof, I leave it a mystery. Anyway, I am not sure how much Jean knew about, or cared about, politics but I do know she read the papers – and then kept them in her apartment.
Family members dropped by from time to time to take Jean to a neighbouring community for lunch. She enjoyed such outings but before she returned other family members had swooped down upon her apartment, taken the reams of paper and cleaned up. Her place was nice and tidy again. Jean of course would be mad as a hatter and would curse at everyone involved. She sometimes remembered from one time to the next and would refuse to go for lunch at the next invitation … but mostly she liked to lunch and the ritual would continue – swearing and all. I like to think that she played the game and played her family, but who knows? Whatever the case, her family was doing its best to look after her interests.
Desolate winter view to the west. Post Office is on right. The “A” frame building is United Church. Photo: S. Marshall 1982
When Jean began to receive Old Age Security, she enjoyed the freedom of having money over which she had some control. In fact, she occasionally offered money to family members for cleaning her apartment or for inviting her to lunch or dinner. Sometimes she left the money later, under a vase or lamp, upon visiting that person’s home. Of course, family members would not take Jean’s money, and Jean, feeling the power of her independence would retort indignantly, “Well, stick it up your ass then!” Others are in a better position to confirm this story but I understand the money was kept to offset Jean’s unforeseen expenses and/or future needs. The money accumulated and it was commonly known among family and friends as “Stick it up your ass money.”
Cookies and commerce
When a new friend Bruce and his family moved to Altamont from Winnipeg, we played at their apartment and in the hallways of the Block, and Jean would often invite us into her apartment or sometimes a group of kids would knock on Jean’s door. We would crowd in when she answered and stand in a small clump (there were no chairs or couches free of papers or boxes) and she would offer us cookies, or bread with uncoloured margarine the same as Aunt ‘Mime would, except the bread was not as appetizing. In fact, Jean was most often very apologetic as she proffered treats, “I am sorry that I don’t have much to give you but take some of these cookies, they’re going mouldy anyway.” My recollection is that we always ate what was offered and none of us suffered any negative consequences.
When I was about 10 years old, dad put me to work in the confectionery which was separated from the Post Office by a thin half wall of 2 x 4 studs and plywood with wire mesh to the ceiling. To get from one side to the other you used an interior particleboard door which had no lock. I remember my father laughing after the Post Office had been burgled (it was robbed more than once) that the crooks took time to smash the door down when all they had to do was turn the handle. Before I get side tracked on the history of burglaries in Altamont (fodder for another blog), let’s return to Jean Madill.
Altamont Post Office, Confectionery and Bus Depot Photo: unknown
Jean usually made the short walk (about 75 meters) to the Post Office each day to pick up her mail after which she would often purchase a treat in the confectionery. In order to pay, she would search through a big shopping bag pinned to her sweater or coat to retrieve another smaller bag containing a smaller purse, and inside the purse was a small plastic change squeeze. She would dig out her 25 cents for payment and then patiently return any change (yes, change from 25 cents!) to the squeeze purse that was then returned to its assigned space deep inside the succession of bags. Sometimes, there were more bags than at other times and it may not have been the height of fashion but it was a security system that seemed to work, as I don’t recall her ever being burgled.
Squeeze change purse
Fashionista meets the fashion police
Jean was also a bit of a fashionista – maybe a “victim of fashion and accessories” (with a nod to Carol Pope and Rough Trade.) Given the multi – bag design of her purses, you might think that Jean is the classic homeless “bag lady.” You would be wrong. She did not carry an excessive number of bags, just enough to keep her money safe and she lived in her own place in the Block and in the iconic Altamont Hotel after the Block succumbed to a declining rural economy, losing its tenants, and falling into disrepair and disuse.
Jean was rarely in accordance with fashion trends and charted her own course. She loved interesting clothes and different colours. As I recall she particularly liked to wear leggings, pants, skirts, blouses, sweaters, scarves and jewelry in any combination or number, in colours that were appropriately gaudy and outrageous, incorporating dots, stripes, checks, paisley or any other pattern, the permutations and combinations of which were seemingly limitless. This was haute couture a la Jean Madill. I am not sure where she purchased her clothes but there has to be a story there. In the end though, the colours per se were not the problem. No, it was her style and the way she wore clothes that led to most of her transgressions with the Altamont fashion police.
In the mid 1960s she caused some consternation when she began to wear maternity tops – much cooler in the summer she reasoned. Fair enough, but generally speaking unless you were pregnant, it was not acceptable to wear maternity clothes, reasoned the local fashion police and others who had influence in her life.
Don’t forget though that this was the late 1960s and early 1970s (I never liked the exactness of defining cultural eras according to the precise numerical value of any decade i.e., 60s or 70s) and “fashion” for teenage girls ranged from headbands to hot pants and ponchos to peasant blouses. I waffle (not the NDP waffle) back and forth as to whether fashion was always a year or two (or ten) behind in rural Manitoba compared to the big centres or if some fashions just bypassed us altogether. In any case, I recall a group of local teenage girls headed “across the line” to Fargo and Grand Forks, North Dakota for a little shopping trip one spring. The teenagers returned with peasant blouses that to the entire world looked just like maternity tops … and they weren’t pregnant … were they? … Well … I am pretty sure they weren’t…. Maybe Jean was ahead of the curve on this fashion trend…?
The fashion police worked overtime to watch Jean even as others made fashion faux pas after fashion faux pas. I have to say that the attention was not always unwarranted. Somehow this question arose in Jean’s mind: Is it acceptable for a woman to wear men’s jeans with the fly undone during the summertime?
“A lot cooler,” Jean reasoned, and she was the first to sport this fashion statement on the streets of Altamont.
“Likely true,” the norm setters (if not trend setters) replied, “but it does fly (so to speak) in the face of community standards.”
Jean, I have to agree with them on this one. It doesn’t matter who you are, you don’t go around with your fly unzipped. Why do you think men have developed surreptitious ways of checking to see if the fly is all the way up? And even then we miss it sometimes and have to be reminded by someone who walks up with a big smile on his/her face and says, “What does an airplane do?” That is your clue to surreptitiously place your hand on your belt buckle, let your fingers drop ever so slightly as to sense the openness or ‘closedness’ at the front of your pants. Some people call this manoeuvre “fly fishing.” If it is open, you abruptly execute a pirouette (if you are very adept) or a demi – rond (if you are not so adept) pulling the zipper up as you do so, your whirling body providing diversionary cover for the covert action of nimble fingers. However, if your zipper is closed, someone has played a trick on you. Embarrassing one way but funny the other way, although it is infinitely more embarrassing when they don’t tell you and you walk around for a large portion of the day with your fly wide open as if airing the family jewels. As I grow older and more forgetful, the more important it has become for Anne to take seriously her duty to give me the once up and down every time I come back from the restroom or leave the house. I believe that all men need a zipper monitor. It was recently reinforced to me that if I slip up and don’t zip up, I am left to walk around the Christmas craft show most of the afternoon looking like Baaaad Santa. Remember: “Zip it” is more than just code for “keep your mouth closed.”
Belt Buckle commemorating Altamont’s Centennial Photo: The PD Gardener 2016
What can we draw from these observations about fashion? Oh boy, I might find myself in trouble here. I offer some possibilities: 1) Fashion is not fashion for everyone; for one thing it has to be age appropriate. If that is the case, Jean, you are out of luck. You were on the wrong side of the age watershed for clothes that can double as maternity as well as peasant blouses. 2) Perhaps those who had influence over Jean didn’t have the same influence over teenagers. After all, the 1960s is noted for teenage rebelliousness. 3) These teens knew that their parents would disapprove of hot pants so they erred, ironically, on the conservative side by choosing hippie peasant blouses. (Is a ‘conservative hippie’ an oxymoron?) I am not sure it matters much as all the teenage girls were right in style in hot pants a year later anyway. I am glad Jean who was well into her 50s by this time never picked up the hot pants fashion. At least, I never witnessed it. I only wish that some other women of her age group were as sensible. … I am stopping this line of thinking now… in the interests of self-preservation. 4) Finally, we can conclude that the only safe way to ensure you are zipped up is to wear clothes that have no fly, giving whole new meaning to that traditional campfire song (possibly written by Pete Seeger,) “There ain’t no flies on us.” Nevertheless, it does beg the question of whether men can wear jeans that have no fly? I wonder what Jean would think?
‘Jeannie from the Block’
Let’s leave Jean’s jeans and get back to a more serious look at ‘Jeannie from the Block’ (apologies to J. Lo.) I know very little about the ownership and management of the Madill Block. It generated income I am certain but how much I cannot say and it is not a matter of great concern to me. I do believe however that there was a concerted family effort to provide Jean as much independence and the best quality of life possible, and the Block was central to that goal at least in the early days. I am pretty certain though that for a large portion of Jean’s adult life, the resources of the extended family were called upon to meet basic needs. Knowing the Madill family as well as I do assures me that Jean was in good hands.
The Madill Block in 1982 looks much the same as it did in 1950. Photo: S. Marshall 1982
If Jean lived in a larger urban setting, would she have fared better? Some will argue that she would have better access to programs that would meet her specific needs. Others will say that family and a close knit rural community was all that Jean needed. Of course, we will never know for certain. Was the reality of her life a success or a disaster? On balance, I would say that it was a success; it certainly wasn’t a disaster. There will never be unanimous agreement on the benefits and shortcomings of rural life but Jean spent most of her almost 101 years living among family and friends in the same small community into which she was born. There are many who will be envious of her achievement. As people approach end of life they often express a desire to return to their families and spend their final years “at home.” You know the saying “It takes a village to raise a child.” Perhaps the parallel credo in this instance is “It took a village to ensure quality of life for Jean.”
Jean’s relationship to others in the community, family or not, was a symbiotic one. In many ways, Jean was an unofficial ambassador for Altamont providing a warm and friendly greeting to all who came within its boundaries. No event held in the community was really ‘official’ until she graced it with her presence. In villages you get used to the fact that everyone knows everyone’s business. That is certainly the case in Altamont but it is not always a bad thing. It meant people were watching out for Jean, and conversely she was watching out for them. And if they weren’t watching out for each other, they were just watching each other. Jean would raise her voice if we children were stepping out of line or if other strange “doings” were in the works. She also tidied up around the village keeping common spaces free of garbage. I believe she was compensated in some manner but I don’t know how much or who paid. I do not believe that she was exploited in this arrangement.
It all seems a little idyllic and idealistic, doesn’t it? Is the secret to providing care for someone with a chronic illness or disability that simple? Family and community to the rescue! Well, not exactly, but before I digress into some political theory, it is time to stop for a moment to smell the roses.
A Rose for Jean
In my previous blog post I recommended a specific rose to represent each of the other three centenarians I have known. Keeping with that theme, Jean Madill deserves an appropriate rose. I thought long and hard about which rose I would chose, not just to celebrate her long life but to represent her story. Inevitably, I gravitated toward the Hope for Humanity Rose developed at the Morden Research Station by Lynn Collicutt in 1984 in the Parkland series and introduced by Agriculture Canada in 1995 in honour of the 100th Anniversary of the founding of the Canadian Red Cross. This compact rose might be overlooked except for clusters of very dark red roses that bloom continuously in the growing season and through which she shouts, “Hey! I am here! I am beautiful!” It is a truism, I suppose, that everyone has detractors and some claim that Hope for Humanity requires extra care and pruning and is therefore “high maintenance.” Some say they hate the name … too cloying, an excess of liberal sentiment that almost makes them gag … but purchase the rose anyway for the beauty of the blooms.
In truth, neither the rose nor Jean Madill is “high maintenance.” All roses do require some regular care and pruning and Jean required familial oversight and a safe haven to thrive … and perhaps a little fashion advice and assistance with housekeeping along the way. Roses bloom with an ethereal beauty that is difficult to capture even with the latest technology. Similarly Jean Madill’s personality, nurtured by family and a caring community, carried a sparkle that shone through the gray of mental illness.
Hope for Humanity: More than meets the eye
From the moment I first heard it, I was smitten by the phrase “Hope for Humanity.” Some would say my infatuation is just the “bleeding heart liberal” or the “social democrat” in me coming to the surface. Maybe that is the part of me that makes others gag? Whatever, I do find the name “Hope for Humanity” thought provoking and uplifting.
We forever have Hope – a concept that I find somewhat mushy in the abstract but extremely sharp in its realism. For example, I hope for a cure for Parkinson’s disease. I carry that hope with me always even though it seems a bit vague, more like wishful thinking for something, anything, to happen. Hope is put into sharp focus though when the reality of what the fulfillment of wishes, prayers, and hopes actually means for persons living with Parkinson’s, their spouses, lovers, family, caregivers, and friends. It means a release from a complex of motor and non-motor symptoms that may range from annoying to unbearable, from predictable to unpredictable, from inconvenient to debilitating, from muscle movement irritants to excruciatingly painful cramping, from mildly intrusive anomalies to completely dominating regularities, from optimism to pessimism, and from joy to depression – all on any given day, at any given time, sometimes repeating with a relentless ebb and flow throughout every 24 hour period … forever. I witness that reality in myself and in my Parkie friends every day. When you understand the magnitude, the depth and breadth of this existence and the enormity of the joy that a cure would bring to our hearts, the relief it would bring to our minds, and the release it would bring to our muscles and brains, then Hope is no longer mushy; C’est clair!
“Humanity” appears to be a straightforward concept meaning “mankind” or “humanness.” A literal interpretation of “Hope for Humanity” would be that we have “hope for mankind,” a lovely thought in its generality but it leaves too much unsaid for my liking. Ironically, I have to seek the abstract before I can understand the concreteness. Abstractly, humanity embodies qualities such as “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.” You might argue that these are merely synonyms but I maintain that they form a package, reinforcing and strengthening each other to create an invincible mesh, a “social safety net,” the concrete manifestation of the altruism necessary for social and economic security.
“Social safety net”
Please excuse me as I continue my digression from roses per se to reflect on the fact that liberal democracies provide some form of “social safety net” for citizens. The term “social safety net” has many definitions ranging from minimal economic support or welfare (provided by governments, charities, informal social groups, and churches to citizens who have fallen on hard times) to the comprehensive supports provided by the modern “welfare state.” I truly dislike the term “welfare state” and I am in a mild state of shock that I have even raised it here. I guess I would prefer ”social democratic state” in recognition that social responsibility is at its core.
In a social democratic state, the “social safety net” expands to include universal health care, unemployment insurance, public education and social services, state pension plans such as the Canada Pension Plan (CPP,) among other things. It springs from an ideology of an equal playing field to achieve success and redistribution of wealth occurs primarily through progressive taxation and access to services on the basis of need. My own personal beliefs fall very closely to these ideals. The state has a mandate to provide the structures of economic and social security for its citizens, intervening with various supports where necessary. No one should be left behind. (See Note 7) It occurs to me that the values of a ”social democratic state” mirror the qualities in our earlier definition of “humanity” e.g., “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.”
It should come as no surprise then that the “Hope for Humanity” rose has a complexity of her own being a hybrid of Prairie Princess, Morden Amorette, Morden Cardinette, R. rugosa and R. arkansana giving it a deep, almost blood red bloom to separate it from the landscape, a hardiness to cold weather, a resistance to disease, and all with a fragrance that does not overwhelm. For me, the heritage of the rose and the intricacies of “Hope” and “Humanity,” confirmed the Hope for Humanity rose as most appropriate to accompany Jean Madill.
Two blooms on recently acquired Hope for Humanity Rose in our garden. Photo: The PD Gardener 2016
Is family the answer?
I would not blame you for saying; “The PD Gardener has led us through a small, quite simple maze where the last turn opens into a clearing where all becomes …well … clear.” We could, quite correctly I believe, conclude that mental illness in Manitoba was not well understood at the turn of the 20th century and treatment was primitive within asylums and hospitals. This approach began to show its cracks and by mid-century treatment was shifting to community. Sadly, small communities such as Altamont (population ~200) within the Municipality of Lorne (population ~ 3,000) were unable to provide mental health and disability programs that would aid Jean’s treatment and care. Moreover, she did not have a disability that prevented her from participating in activities of daily living so there was an expectation that she could live with a certain independence outside of an institutional setting.
“Aha!” you say, “Then it is the family’s obligation and duty to care for the family member.” You conclude that this is a story about how family provided for Jean and all was well. You are correct to a certain degree. I believe Jean’s family did indeed ride to the rescue – out of love, duty, obligation, responsibility or whatever you might call it – in the interest of choosing a reasonable option for Jean in a society with few options at the time. The family and many others from the community are to be commended for the role they played in Jean’s integration into community life. Altamont provided the environment Jean Madill needed and with family financial resources, the ‘safety net’ was in place.
Normally, I might be comfortable to let this observation be the end of our discussion but not today because a key question is prodding provocatively at my political core. Does it naturally follow that if we have a mental illness, disability or other chronic condition such as Parkinson’s or Alzheimer’s, then family is the preferred social unit for provision of care?
I fear that I have now opened up another can of worms and my moral and political compass must withstand intense interference as I pass through a very dangerous highly charged magnetic field. My good friend Selma Garten states unequivocally that the only real safety net for anyone requiring care is family. Put bluntly, families are reservoirs of love and do not permit family members to be abandoned. Selma speaks from much experience having cared for parents beginning at a very early age, and for her sister as they grow older. Her thoughts speak volumes to me in that one of the greatest fears I have as a PwP is the fear of abandonment as Parkinson’s advances and takes a greater and greater toll on my body and mind, as well as on the bodies and minds of those I love and who love me. I don’t believe that this is an unreasonable fear on my part, not because I do not have faith that Anne and my family love me (I believe with all my heart that they do and I return that love unequivocally) but because the crushing weight of the care giving function in terms of time and resources may be just too much for any family to shoulder if a ‘social safety net’ is not in place to enable and assist the family to play its role over an extended period of time.
It is probably safe to say that the ideal scenario has us spending our last years with our families, secure in the knowledge that these years will be the ‘best’ years of our lives. Equally, I believe that it is safe to say, “That ain’t going to happen for many of us.” I say this not because I am depressed ( I am not) or because I do not have confidence in my loved ones, but because the cards are stacked against us as we try to reach the ideal. For families to be the ideal, our society (social, political and economic life) must provide families with the capacity to meet the demand and their mandate. To date, social democratic states have not been able to meet the test of the ideal although they are working to fund and deliver “humanity” in long term care and end of life care. Institutional care is most often described as cold and impersonal whether provided by the state, charitable organizations, or for profit entities. In 1977 Daniel Jay Baum characterized the nursing home industry as Warehouses for Death to warn us against the institutionalization of care for the elderly. The warning continued the move started in the 1950s and 1960s toward community care – not to be confused with family care. Nevertheless, recently I heard an interview on CBC Radio with Kay Parley, a psychiatric nurse who was also a patient of that era and she claims that the move to community care was not always the best move for patients – that they would have received better treatment in institutionalized settings such as mental hospitals where patients were “pushed to do things” instead of getting treatment under the “medical model” where the focus was on curing and looking after the patient.
Now 40 years later, the warning about nursing home care is as salient as ever and few would agree that institutional care is to be preferred over care provided by families. In fact, it is difficult to argue against family values when they are posed as compassionate and progressive ideals in contrast to institutions. But I am about to do just that. You see, the problem is that families most often can’t meet the test either.
If we assume that family is best suited to provide care for those who are mentally ill, it should also be best suited for other critical societal responsibilities. “Home schooling” would be the norm instead of public and/or private systems of daycare, kindergarten and grade school. At the opposite end of the age spectrum, elder care would be a family responsibility and government run care and private, for profit care would be least desirable. However, I have a gut feeling that some people are less likely to situate elder care in the family than they are to situate early childhood education there. Elder care has a different labour intensity and is, considering the cost of medical devices and pharmaceuticals etc., more expensive than childcare and early grade school. The shorter duration of elder care may offset some of the cost. To be very crass about it, youth represent ‘future value’ and while the chronically ill elderly are ‘treasured’ for past contributions, the cost of care discounts their current value.
I want to be clear that I am not ruling out family as a legitimate option in individual cases. However, I am ruling out family as the primary and most effective provider for a complex set of societal needs e.g., health care, care for the mentally ill and disabled, all levels of education, unemployment assistance, pensions and retirement income, and many other responsibilities.
Even if family values and the family unit were extremely strong in our culture (and I am not sure it is that strong) the tensile strength (See Note 8) of the family cannot be infinite. There is a point at which the ability of the family to withstand stress fails. Oh sure, the strength of each family is different resulting in uncertainty and unpredictability when one or more of its members require care outside of the norm. How a society identifies and deals with situations requiring care are important questions. Can family be the backbone for all health, and social and economic welfare or, asked slightly differently, can family be the ‘social safety net’ from first report to last resort?
Please bear with me. You see, I can’t get it out of my head that the different types of care required for the wide array of health and mental illnesses alone places huge stress on families. Over the century of Jean Madill’s life, the identification, classification, psychological and psychiatric therapies, drug therapy treatments, and social and education programs changed significantly. These changes were both qualitative and quantitative, and included new and better therapies as well as different locations for the responsibility, administration and delivery of programs. These changes require financial resources and human labour to navigate and implement successfully – resources most families do not possess. In truth, the modern family unit is not designed to accept these obligations on an individual basis never mind on a societal basis
Two critical stressors
Families are never exempt from the stresses of having to care for someone with a chronic condition. Financial burden is one such stressor and is most acute when the family is not able cover costs of care. This burden is somewhat less if you live in a functioning “social democratic state.” The more complex the care and treatment, the more costly it is. The longer the duration of care, the greater the financial burden. The good news is that if you are very wealthy, maybe you can manage. However, it is likely the threat of bankruptcy or significant loss of wealth is omnipresent. Bankruptcy resulting from the cost of health care is common in the United States even if the family has some type of health insurance. It is not so common in Canada, which has more public and subsidized health care.
Caregiver burden is a second stressor and accrues to family member(s) over time. The longer the family member requires assistance and the more complex the care is, the greater the caregiver burden. However, the good news is that the more responsibility for care is spread across the extended family, the more caregiver burden can be ameliorated for any individual family member.
Today, families are faced with a rapidly increasing incidence of neurological conditions e.g., Alzheimer’s which is a common form of degenerative dementia and Parkinson’s disease where an estimated 50 – 80 percent of Persons with Parkinson’s (PwP) will develop Parkinson’s dementia within ten years of diagnosis. PwP will require increasing levels of care even if there is no dementia present as its advanced symptoms and the side effects of the drugs are extremely debilitating.
Usually a person newly diagnosed with Parkinson’s will have a high degree of physical and mental functionality permitting independence on matters of daily living including continuing to work in many cases. This independence diminishes as the disease advances but the life expectancy of PwP, while shorter than those without Parkinson’s, is still a good long time depending on the efficacy of the pharmaceutical treatments and physiotherapy/exercise programs followed.
While the family will remain at the core of activities of daily living and non-medical care for a lengthy period of time, there will be an increasing reliance on professional support including neurologists, family doctors, nurses, pharmacists, psychologists, psychiatrists, physiotherapists, speech pathologists, social workers, Parkinson’s organizations, exercise coaches, gym instructors, support group volunteers, and a whole raft of others. Many PwP will develop dementia and be forced onto a path of complete dependency. The cost of care and therapies increases almost exponentially as the disease progresses. If there is no extended health insurance coverage, the cost can be crippling for the family.
As Parkinson’s is a progressively degenerative disease, caregiver burden also increases as the disease progresses although not necessarily in a linear relationship with time. It may progress quickly, slowly, or not at all during some intervals, but know this; while it may take a hiatus from time to time, it will inevitably advance.
Along with that inevitability, PwP will eventually require more care than most families are capable of delivering at a cost that is much greater than most families can afford.
Very few families possess the tensile strength to fulfill the needs of family members who have significant health needs. In other words, in general the family is not well suited to be the ‘safety net of last resort.’
Long-term care is a vital component of the Ontario health care system. While most seniors can expect to reside in the community throughout their later years, a significant number will require institutional care to ensure safety and well-being. The need for long-term care services and supports is often greatest for those who are considered the most vulnerable – those who are frail, or have complex health conditions, or psychiatric disorders. (See Note 9)
What is my advice? If you believe that family is your safety net, then accumulate wealth and establish financial stability as quickly as possible and never relinquish it. At the same time get busy with making a large, cohesive, extended family, one that doesn’t suck up all your wealth. I say this tongue in cheek as liberal democracies are trending toward greater inequality between the top earners in the population and everyone else. According to Canadian Centre for Policy Alternatives researchers
The richest 1% of earners in Canada accounted for 32% of all income gains between 1997 and 2007. That is four times their share of total income gains during the 1960s (another period of rapid growth) and almost double the share of gains of the 1% during the Roaring Twenties. (See Note 10)
I wish you good luck in making the top 1 percent of earners as not everyone can or will. At the same time the nuclear family is getting smaller not larger.
The average number of children per family decreased from 2.7 in 1961 to 1.9 in 2011. During the same period, the average number of people per family declined from 3.9 in 1961 to 2.9 in 2011. (See Note 11)
I think it is clear that it is not possible for financial and caregiver stressors to be alleviated solely through generation of wealth and increasing family size. Policies designed to redistribute wealth are essential but run counter to policies of wealth accumulation. Decreasing family size means that care is less likely to be spread across the family. Add to that an unwillingness to sacrifice earning potential i.e., to leave the labour force to provide care, means that caregiver burden will continue.
Finding The Foyer
But have I convinced you that institutions are the best alternative? Not likely. As I said earlier, ideally we all would like to be with loved ones until the very end … or put another way, do not want to be abandoned.) In the end though, our receptivity to, and acceptance of institutional care probably is conditional upon specific circumstances and we must prepare ourselves to make this decision.
I believe that Jean Madill’s family came as close to meeting the tensile strength test as any family has … but Jean lived to be over 100 years old, a wonderful achievement! She outlived most of her immediate family and contemporaries placing considerable responsibility and stress on extended family. Altamont served as the secondary safety net for most of Jean’s life and certainly played a key role in ensuring that she was able to live out her life in dignity in a personal care home in the neighbouring community of Notre Dame de Lourdes.
The Foyer Notre Dame is an accredited 60-bed personal care home that provides continuous quality client care and service in both official languages. It’s (sic) health care team is composed of physicians, nurses, a social worker, a registered psychiatric nurse, an occupational therapist, a recreation worker, a dietitian and a large support staff. Other services such as foot care, hairdressing, companion and clothing sales are available. Residents may access the spiritual care and guidance of their choice. In addition to these various services, the Foyer also operates an Alzheimer Unit. (See Note 12)
It is tempting to wax poetic and become soft and fuzzy about family values but I caution against romanticizing the role of the family. Some think the family is, or ought to be, the safety net of last resort but the reality is that it is unlikely to be. Jean’s century long journey to The Foyer highlights the necessity for governmental programming for those who require it. When caregiver burden and financial burden are just too great for families to handle independently, it is time to find the Foyer (not just metaphorically speaking.)
We all need a Foyer in our plans. I trust that if I am compos mentis, I will know when the time is right, for me and for my family, to take appropriate action. If I am not, then I trust my family to help me find The Foyer.
Still you are correct if you think there is a ‘feel good, soft, sweet centre’ to Jean’s story but it is not found in a proof that family is the best avenue for success. To the contrary, Jean’s case is one of the exceptions and attempts to duplicate her experience, as an example of effective social policy for mental illness, are likely to fail. Membership in family and community is contingent upon relationships and characteristics that are rarely transferable and are almost never duplicated. In other words, we can marvel that it works in one instance but we can know that it will occur only rarely, if ever, in another. It is rather like counting on successive individual mutations every single year to improve your crop yield.
Whew! That last section was rather serious, wasn’t it?
Initially, the objective of this post was to include Jean Madill as another remarkable woman from Altamont who lived to celebrate her 100th birthday. I am fortunate to have known her and to know something of her life and circumstance.
I also wanted to address some of the realities of life for those with mental illness and disability, partly through the eyes of someone (me) with minimal awareness and understanding of mental illness never mind the care, treatment and responsibilities for costs. I have exposed my gross ignorance more than once in the previous pages.
As I reflect on my encounters with Jessica and the King of Prince Edward Island, it is clear to me that the stigma of mental illness is incredibly hard to shed because we do not speak of the mental illness or the stigma directly. Rather, we camouflage both in euphemisms and stereotypes that mislead us.
I am not defending my own actions or denying culpability on my part in these exchanges but they were enough to make even me (a person who desperately wanted to fit in) feel ill at ease. Any encounters with patients who were allowed to be on the mental hospital grounds were awkward to say the least, partly because we had only the perception of the mentally ill as being “crazy” to inform our expectations and behaviours. Needless to say, the “crazy” stereotype was (and is) a very poor basis for developing awareness about mental illness … because labelling them “crazy” allowed us to take away their dignity. It is with some degree of consternation that I realize that even the way I have recounted these two stories contributes to the stigma.
I have also used some humorous stories involving Jean Madill in this account. Some may argue that these accounts contribute to the ongoing stigma of mental illness and trivialize both the condition and the lessons to be learned. My view is that these stories are evidence of ‘humanity’ – perhaps the most valuable contribution that Jean herself brings to this discussion – illustrating that those with mental illness and chronic health conditions have a right to both dignity and quality of life. I have done my best to blend humour with eccentricity in a manner that respects those rights.
One last, less serious, question
Finally, I have one last niggling question: If I live longer, will I know more people who reach 100 years of age i.e., will I know more than the four I have already identified? Hmmm… maybe the probabilities do increase [How is that for using a probability of probabilities hedge?] but I think the more intriguing question is, “Will other people live long enough?” For those who are older than I am right now, I wish you good health so we can party at your 100th birthday and you can party at mine in time! For those who are younger than I am now, I wish you good health so that we can party at my 100th birthday before we both celebrate yours! Of course, I gratefully accept wishes for good health from everyone so that I may fulfil my end of the bargain.
Santé! Happy 100th Birthday everyone!
- Playground Jungle http://playgroundjungle.com/2011/09/gene-gene-made-a-machine.html
- The term ”mental breakdown” seems to be synonymous with “nervous breakdown.”
- Mayo Clinic http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/nervous-breakdown/faq-20057830
- Mayo Clinic http://www.mayoclinic.org/diseases-conditions/mental-illness/basics/definition/con-20033813
- Boston College Center for Psychiatric Rehabilitation https://cpr.bu.edu/resources/reasonable-accommodations/what-is-psychiatric-disability-and-mental-illness
- Selkirk Mental Health Centre History, From “Manitoba Insane Asylum” to “Selkirk Mental Health Centre” http://smhc-archives.com/History%20of%20SMHC.pdf http://smhc-archives.com/History%20of%20SMHC.pdf August 2009.
- Some political parties and movements oppose the welfare state and derisively refer to governments that provide extensive state sponsored programs and services as the “nanny state.” These groups want to minimize the role of government in the everyday lives of citizens, leaving those who are on the margins to fend for themselves, and if they fail, so be it.
- Defined by Collins English Dictionary as “a measure of the ability of a material to withstand a longitudinal stress, expressed as the greatest stress that the material can stand without breaking.”
- Canadian Mental Health Association Ontario
- Klein and Yalnizyan 2016
- Statistics Canada
- Southern Health Regional Health Authority
Alzheimer’s Association http://www.alz.org/alzheimers_disease_1973.asp
American Senior Communities, Mental Illness vs Dementia in the Elderly, http://www.ascseniorcare.com/mental-illness-vs-dementia-elderly/
Daniel Jay Baum, Warehouses for Death, Burns and MacEachern Ltd. 1977.
The Beatles, When I’m 64
Bell Let’s Talk Day 2016, http://letstalk.bell.ca/en/
Canadian Mental Health Association, Ontario http://ontario.cmha.ca/network/minding-our-elders-mental-health-in-long-term-care/
CBC Radio, Interview of 93-year-old former psychiatric patient and nurse on lessons from LSD, Tuesday June 14, 2016
The Clinique: a monthly abstract of the clinics and of the proceedings of the Clinical Society of the Hahnemann Hospital of Chicago, 1923.
Canadian Rose Society http://canadianrosesociety.org/CRSMembers/Resources/RosePhotos/ParklandRoses/tabid/71/Default.aspx
Collins English Dictionary
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© Stan Marshall (The PD Gardener) 2016.