Roles Reversed

Healthy Elderly Get First Crack at Nursing Homes

2011-12-14T17:55:00.000-05:00

After a series of articles highlighting the manner in which the elderly suffer from poor care in Ontario hospitals and abuse in Ontario nursing homes, now we learn the true reason for the cause for congestion and long waits for the sickest of the elderly.

Lo and behold, our nursing homes, which we as taxpayers fund, are playing games with both the elderly and the families that must care for them: they are choosing the healthiest of the elderly to populate their facilities, while those that need it the most, are left behind in hospitals, who in turn, threaten families and elderly with illegal fees. Sounds like a tag-team wrestling match, with nursing homes and hospitals teaming up, only we are the ones being pummelled to the ground, face-first, with our hands and feet tied behind our backs.

Shameful. Dishonest. Unacceptable. A call to action.

I have asked my readers and those that come to this site through a web browser search, to contact their MPPs, in the past. I am now asking you to do so again. This government and its lack of oversight must be challenged.

The easiest way to ensure that there is transparency and a forum for citizens to complain about one of the most essential of human rights, as protected under our Charter of Rights, is to allow the Ontario Ombudsman to oversee and investigate into all areas of healthcare. Today, the office of the Ombudsman cannot investigate complaints against the following:

court decisions
doctors
hospitals, nursing homes and long-term care facilities
school boards & universities
lawyers
police
federal government programs or decisions
private companies & individuals

Why shouldn't nursing homes, hospitals and doctors have objective oversight? Only through an external mechanism can we truly have accountability and responsibility in what are growing areas of concerns. Self-regulation through Ontario College of Physicians, or Ontario Long-Term Care Organization or, Ontario Long-term Care Association, has not proved sufficient in the protection of our needs, rights and health care.

We can collectively make change happen. My motivation stems from my father's last years' being cared by some of the best minds in terms of medicine, but also by some that were found lacking in both requisiste experience and compassion, and in facilities that represented some of the worst parts of the Ontario healthcare system. I also want to be able to look my mother in the eye and know that I am doing what I can to stand up for their rights.

A call to action. Its your turn, now.

Elderly Abuse in Ontario Nursing Homes

2011-11-23T13:57:00.001-05:00

In the second part of The Star's Series on Elderly Abuse in Nursing Homes, we are introduced to more heart wrenching stories of elderly abuse and families that were not kept abreast of how serious some of these infractions were.

I'm sure the Ontario Liberal government will state that they're shocked and appalled at these findings, however, unless they increase the budgets of any departments that oversee and inspect these nursing homes, then it will be mere talk.

In tough economic times, I find it hard to believe that other than meeting with these nursing home operators and demanding answers, the Liberals will properly police these homes on an on-going basis. It will take an upheaval of massive proportions to create better watchdog and whistleblower protection to truly make a difference.

It is no different than the water tainted scandal in Walkertown, the lysteria scare that befell Maple Leaf Foods, and the many other instances where self-regulation or laxed industry inspection or standards, eventually cause health scares. Check out the self-regulatory standards in aviation in Canada that Transport Canada has agreed to.

If we continue to vote in market-oriented governments like the federal Conservative government and the Ontario Liberals that just won reelection, then already tight dollars that are being squeezed by further business-focused tax cuts or loopholes, cannot support the type of regulations we need in this country to protect you or I.

This isn't a political pandering, its merely facts. At the end of the day, there are only so many dollars available to a government; how it chooses to spend those dollars dictates what type of society we live in. If we continue to vote for these parties, then we really cannot be shocked when these horrendous events or issues arise.

Nursing homes, education, health and safety. I hope we make the right choice for our elderly today, tomorrow and every day.

Elderly Abuse - Part 1

2011-11-17T14:59:00.000-05:00

As promised yesterday, The Star's series on Abuse in Ontario Nursing Homes sheds light on an increasing problem in Ontario nursing homes.

Please read the article and feel free to pass along to others. Once again, contact your MPPs and MPs to communicate your concerns about this matter and the lack of accountability and reporting in a transparent manner.

I encourage you to speak for those that cannot speak for themselves. Its shocking and heartbreaking as to what passes for care, when it comes to our elderly.

Elder Abuse in Nursing Homes

2011-11-16T15:48:00.001-05:00

Please watch and share The Toronto Star's series on Elder Abuse in Nursing Homes, starting Thursday, NOvember 17th.

We need to push our elected members of government at provincial, state and federal levels to protect those who cannot protect themselves. The elderly will double in number over the next couple of decades, and if we don't set better policies and protection now, it will only get harder as time passes.

Its time we force the governments to hold nursing homes responsible and accountable to us. Please, don't wait until one of your loved ones ends up as one of these victims.

Shame on all of us if we allow this to continue without standing up and being heard. Write, call or email your Members of Parliament and/or your Ontario MPPS.

Hospital-Stay Delirium

2011-11-13T13:47:00.002-05:00

Many elderly may suffer confusion or other cognitive issues during, or after, a hospital stay. If you have experienced such an episode with an elderly family member or friend, its important to read a recent article in the New York Times regarding hospital-stay delirium.

When my father entered the hospital in 2004, one of too-many stays over a 14 year period after being diagnosed with Parkinsons, delirium set in almost overnite. Confusion, paranoia, difficult at times aggressive behaviour, halucinations and loss of memory overtook Dad, and started a process of learning on the job, so to speak, for Mom, Steve and myself. I'm not sure had we known about many of the suggestions in this well-researched and highly informative article, if it would have made a difference because of the underlying Parkinsons. But at least we would have been informed and perhaps better able to handle the nightmare that ensued.

In Dad's case, it took two months post-hospital stay, for some of the symtoms to normalize, but we started to realize that we were facing a new normal. The old normal was a thing of the past.

What I can also share is that for those reading this post in the Ontario region, if your loved one or friend starts to exhibit any of these symptoms, get the Community Care Access Centre involved before you bring that person home. In fact, don't sign the patient out before CCAC, located in most Ontario hospitals, agrees to provide several hours of personal care services, nurses, etc. Once you bring the patient home, it will be difficult to get any help from them to assist you. Their current mandate is to free up hospital beds, and you can hold that process up until they provide the services you or the patient will need once home.

Educate yourself, and share this article with anyone that has elderly in their lives. It may only be a temporary condition, but as the article states, its can be an indication that there is some other health matter that needs to be assessed and diagnosed.

More House Calls? Don't Hold Your Breath.

2011-08-29T13:24:00.002-04:00

With the Ontario provincial election just around the corner, all parties have started to release elements of their platforms. Of course, we have all become accustomed to believing what they do, rather than what they say, during election run ups.

What caught my eye, however, was a promise by the Liberals to bring back house calls by GPs, for the elderly. Its all part and parcel of their desire to assist and keep the elderly in their homes for as long as possible. Its also in keeping with many of the Liberals' healthcare decisions and budget dollars allocated since the last election, to reduce the numbers of elderly that often end up in nursing homes.

While a well-intentioned policy, the reality of doctors agreeing to conduct house calls is an unrealistic expectation. When Dad returned home after his last stay at Trillium, he needed medical attention twice before he passed away. Both times, we called his family doctor of 25 years, Dr. Martina Rabzel, and she declined to see him at home, even though her office was less that a 5 minute drive away. Nor was she able to offer any referrals or suggestions as to how to get him medical attention, other than the emergency room at Trillium.

Fortunately, my brother was aware of MedVisit, a service that provided house calls for any sick patient with a valid OHIP card in the GTA area. But what do you do if you're outside of the GTA area? And what happens as more people learn of this service; will it be able to meet growing demand?

With a growing elderly population, unless the government can double or triple MedVisits budget , then fund similar services in every Ontario region, then really, what is the point of today's announcement? Because we know how their last big announcement about greater funding to keep the elderly at home longer with greater in-home service through the CCAC's turned out: it sucked dollars out of the general CCAC budgets for elderly that were already at home, rather than elderly that were being newly discharged from hospitals.

Budgets are finite, folks. So, we need to ask ourselves where exactly are the dollars for more house calls for elderly come from? What other services will be delisted? What other surgeries will be cut?

And where are these supposed doctors to come from? How many of the GPs in the system today care enough to make those greater number of house calls. I can tell you that Dad's GP likely wouldn't be one of them.

The New Normal

2011-08-01T10:10:00.004-04:00

Chasm. Lost. Unbalanced. Upside down. Inside out. Incoherent. Broken. Shredded. Numb.

Some or all of these describe my state of mind or state of being since Dad's passing. Is it true? Really? It can't be.

Yet it is. Painfully so.

Even though I had seven years to prepare for this, I found that you are never really prepared. In as many times as I visualized it, this was not how it seemed. Then again, how can something unknown really seem?

Not like this.

Not when your mind keeps playing the images of the last days and weeks of your father, when he alternated between this universe and the next one.

When the fear in his eyes told you that he knew his days were numbered.

When he gasped at the reading of my blog post, honouring him during Father's Day. The look in his eyes, when we made eye contact spoke volumes.

Volumes of the past, the present.

The end.

The end that came on July 8th. The end that did not go peacefully, at least as peacefully as it could have. The end that came too late for him, yet too soon for us. The end that keeps replaying in my mind's eye. The end.

I keep reminding myself, it is so. It is final. It is.

This is the new normal, if normal is what today appears to be.

What will tomorrow bring? Less numbness? Less broken?

or just less. We'll see.

But I will always remember. Always. Dad.

R.I.P. Dad

2011-07-10T09:26:00.005-04:00

You were and will always be the heart and soul of our family. Your courage inspired us, your determination fueled us.

You are finally free. Free from Parkinsons. Free from the hospitals. Free from the doctors. Free from it all.

Free to create, free to enjoy, free to walk, free to run, free to dance, free to laugh, free to eat, free to drink.

As you knock on the gates of heaven, St. Peter would be wise to let you in without delay. By then, you will have sized up heaven's landscapes, and determined what and how you could improve your new neighbourhood. Much like the neighbourhood in Mississauga you scoped out for us in the 70's before we moved here from Montreal.

Free at last.

Until we meet again, Dad. I love you always.

Hospitals Still Bullying Elderly Patients

2011-06-22T16:39:00.001-04:00

Over the past few months, we heard many stories of Ontario hospitals trying many different tactics to oust elderly patients from their beds. Circumstances and stories may differ, by the tactics remain the same.

For followers of this blog, we shared our own family's story of my late father's last hospital stay at Trillium. On a weekly basis, we battled and argued for Trillium to continue to care for a very sick man, who had no business being anywhere but in a hospital. We too were threatened with a $1700 monthly charge, similar to Carol McMurray's experience with Toronto East General.

The Liberal government was on record back in the spring of 2011 with an announcement that any and all such charges or threats to charge were to cease and desist. Clearly, the hospitals did not get nor heed the message.

Ontario families need to be aware of these on-going illegal efforts, and continue to shed public light on such attempts at hospitals to bully the elderly. Should this happen to you or anyone you know, please follow Ms. McMurray's example, and notify your local MPP.

Gene Therapy for Parkinson's Disease

2011-06-14T14:39:00.002-04:00

The fight to cure Parkinsons has led to many new avenues of better understanding the disease and its markers, genetically. While drugs can assist in masking the symptoms of the disease, including tremors, freezing, and weakness, there does come a point for some, when drug therapy loses effectiveness.

Dr. Andrew Feigin of The Feinstein Institute of Medical Research conducted a trial for gene therapy for advanced parkinson's patients. Claiming significant success in improving motor function for those patients who no longer benefit from drug therapy, gene therapy does seem to show promise for neurological disorders.

Although many questions remain unanswered, in terms of how long this positive effect would would last, the side effects of injecting viruses directly into the brain, and what effect it would have, if any, for the dementia that accompanies Parkinsons for some.

However, these really are early days in gene identification, let alone gene therapy. But hope springs eternal in medicine's continued fight for a cure.

Too late for my dad, but hope for all others and their families.

Garo's Way

2011-06-14T12:04:00.002-04:00

Dad’s way has always been about family.

From the family that he was raised in, for whom he sacrificed his own higher education and career aspirations in taking over a family business for an unappreciative father, to supporting his younger brother throughout his university years so that he could follow his dreams.

To our family, and the sacrifice of leaving our extended family behind in Montreal in 1977, so that my brother and I could have a more prosperous future, absent of the economic and politic shift in Quebec during its tumultuous years in the 70’s and 80’s.

To his new community in Mississauga, for whom he worked feverishly to set up Community Watch, after several homes, including ours, were broken into the first Easter we spent in our new home province.

To his new brother-and-sisterhood, the Parkinsons Community, for whom he toiled to raise funds for research and education, after he was diagnosed in 1997. And for whom he has agreed to donate his brain after he passes, so that Dr. Lang’s team at Toronto Western, along with the many other doctors who work tirelessly in pursuit of a treatment and solution to this insidious disease, can one day be victorious.

His way has also been about a strong will, truth and desire to live, love and enjoy. A spirit that shines in every nook and cranny in our familial home and every space that he occupies, indoors and out. A spirit that shouts out “Here I am, ready or not. And while you’re at it, just watch me”.

A spirit I inherited from him, come what may.

That spirit helped many a neighbour when household or outdoor items needed repairs. Sprinkler systems needed to be designed and installed? No problem. How about car repairs? I’ll be right there. Need your driveway shoveled? I’ll take care of it while I’m doing mine.

All done in his spare time on weeknights or weekends, after a long day or week spent at Hawker Siddley.

That same spirit helped the owners of a hotel we stayed in for many a summer holiday in Florida, during our youth. We might have been at the beach or in the ocean, enjoying the white-sand beaches of Clearwater, while Dad could be found back at the hotel, helping the owner re-wire a hotel room fixture, or fix a pump, or secure a faulty lock.

Dad was never good with free time. Free time was lost time.

Unless it involved Mom. In Dad’s mind, his time was her time. Any day, hour or week. Any chore, occasion or concern. Done, done and done. Well, maybe not dusting, cleaning washrooms or trips to locations not bearing beaches. Those were not part of any bargain.

And then there was his love for the Blue Jays. During the World Series in 1993, he was found huddled over a portable radio someone had snuck into a wedding reception, drink in hand, ready to salute his favourite team.

A couple of years ago, when Parkinsons and recovery from a broken hip significantly hindered his mobility, we were able to secure some seats for Dad and Mom at Rogers Centre for Father's Day. The smile from ear to ear said it all. As did a peaceful night, absent of nightmares and struggles that mars many a night for most Parkinsonian patients.

That spirit also helped him overcome a spinal infection in 2004, a broken hip in 2007, and since December 25^th, 2010, three seizures, two bouts of pneumonia, and a cracked rib. Most Parkinsonians wouldn’t have made it through these setbacks. Dad has. Much to the surprise and bewilderment of many a doctor, specialist and therapist at Trillium and Toronto Western who were ready to write him off again and again. A middle finger to all of you, his spirit and will shouted.

That shout was also evident a couple of weeks ago. Dad can no longer eat or drink, and relies on a gastric feeding tube to get his nutrition and hydration. He has great difficulty in speaking, even the fewest of words. For a man who loved and cherished his food and cold, tall glasses of water, it is heart-wrenching to see. Dad, on the other hand, never gives up, asking for souvalki , peanuts, mango juice, and his favourite, baklava, to be magically transported through a 3/8” feeding tube. Bring it to me, I’ll figure out a way, his eyes tell us.

On this particular occasion, he was alone in the family room, asleep, so we thought. I was in the basement, Mom organizing some files in her bedroom. I heard Dad waking up, and moments later, ask for water in a very hoarse and unclear voice, in Armenian, his native tongue. He repeated it several times, not loud enough for Mom to hear. Undaunted he switched to English, and called out again, several times. Once again, Mom did not hear. “Agua” he finally yelled out, using the Spanish he had learned from all those years of summer holidays in the Dominican Republic. Agua it was, although all Mom could offer him was water across his lips.

So, while he has valiantly fought this disease for 14 years, his heart and desire leading the way with gusto, his body and brain are now failing him, and the end is near. He may not be able to read this tribute, this recognition of his many ways. This appreciation from a daughter who is far too much like him, to have always appreciated the ways of her father. But, he can recognize his picture next to this post. And he can recognize the walkway dedicated to him, Garo’s Walk, adjunct to Clifton Public School, in recognition of his community work and dedication. His pride swells, thrilled with the recognition the city bestowed to him.

Family. Friends. Community. His sacrifice, love, perseverance and desire to help any and all that came his way. That’s how I will always remember, honour and cherish Dad. Yesterday, today and tomorrow.

Happy Father’s Day, Dad. A few days early, just the way you like it.

Hospitals Failing the Elderly

2011-04-07T14:51:00.003-04:00

A second go round with spine surgery on my part, and dealing with Dad's continued fight with Parkinsons has depleted our family, and is behind the lack of posts on this blog for almost a year.

When I can, I will share in greater detail the absolute nightmare we have had since Christmas Day, when Dad was rushed to Trillium Hospital in Mississauga, Ontario with a significant seizure, double pneumonia, and a cracked rib due to a careless part-time caregiver who neglected to inform us that he had fallen. She has since been terminated.

Since then, he has twice beaten back death knocking on his door, coming down with aspirative pneumonia, and a second and possible third seizure. To top it off, numerous poor medical choices made by incompetent or unconcerned doctors and a surgeon who used a "standard" method to insert a peg tube as a means of getting Dad the nutrition he requires, have affected his recovery and state of health.

Unaware, ill-trained and ill-prepared nurses, a missing physiotherapist, and an occupational therapist that has done everything possible to undermine Dad's well-being are just some of the obstacles we have faced with the staff found on 5J at Trillium. There are some real gems on 5J, and some compassionate and concerned nurses, who seem to be stuck behind a system that isn't working, mired in inflexible policies and procedures, and supervisors that would not be our first choice in management roles.

We have had to use the Patient Relations Manager to help us intervene and be heard on many a medical mistake that nearly caused Dad his life.

In a nutshell, Trillium Hospital is ill-prepared to deal with an aging population, specifically those elderly who have chronic, degenerative conditions such as Parkinsons and dementia. Standard patients, or those with non-complex issues are probably fine. But, the more complex cases pose problems that Trillium seems unable to accommodate or manage. Actually it's quite shocking when you think of the massive change in demographics that we are undergoing, and the complexity of health concerns that accompany the elderly.

It's one thing when you admit to such a gap, but its a whole other ball game when you are faced with obstinance and a single-minded team approach to freeing up beds as quickly as possible, usually at month's end, never mind the well-being of their patients.

In the last couple of weeks alone they discharged a few of the other elderly patients on 5J, only to have one rushed back to emergency within an hour of discharge; the second one was rushed back within two days; and the third with a couple of weeks. See a trend here?

It is why we micro-manage Dad's care, and why we have continually used the Patients Relations Manager to fight for better health care and a demand for changes to the Primary Physician and surgeon on his case. It is why he is constantly monitored by my mother and new caregiver 12 hours a day, and why my brother has had to place his plans of launching his own business on repeated pause.

Just as an example, the Occupational Therapist has insisted that while Dad is sitting in a wheelchair or other seat, that no belt is used to secure him to that chair. Her reasoning is that the peg tube placed in his abdomen would be compromised with the use of a belt. We have patiently tried to explain that in the past, he has fallen out of such seating, when in a confused state he has attempted to rise from a chair. It's a matter of his safety, which we have clearly communicated. Besides which, there are ways to pad the area around the peg tube so that direct force from the belt would not interfere, but creative solutions are not a strong suit at Trillium. Whether she realizes it or not, she has created a liability risk for Trillium, in that if he does fall, they will be held responsible for their decision.

It is exhausting to oversee and micro-manage Dad's care, but necessary at Trillium. The stress has taken its toll on my brother and mother, who must fight constantly or be aware of any changes to Dad's health every day, while also taking care of me, post-spine surgery. I fear for both of them, particularly the health of my mother. As most families in this situation well know, it's the caregivers that often suffer the most.

On a positive note, I will take a moment to thank the wonderful team at Baycrest Hospital and the Movement Disorder Clinic at Toronto Western Hospital led by Dr. Lang, with whom we have consulted based on concerns that the direction Trillium was heading in or suggesting, was not in Dad's best interests. Their on-going support and willingness to assist and inform, even though Dad is at a different hospital, exemplifies what healthcare should look like when the patient's best interests are first and foremost. It also demonstrates that not all hospitals can have the necessary expertise to deal with all health issues, and consulting across hospitals in a public model, makes sense.

Many thanks also to Dr. Shulman, the head of the Geriatric/Psychiatric clinic at Trillium. Dad has been a patient at Dr. Shulman's clinic at Trillium, for several years. If not for his continued oversight of Dad during his stay at Trillium, I can't imagine where we would be.

This is an area that is sadly lacking in funding and actual physicians who specialize in Geriatric care. It took three years for Dr. Shulman to find an additional doctor to join his team, which is bursting at the seams with patients in crucial need of his services. Where is that money Mr. McGuinty promised? Where is the walk that accompanies the talk?

Perhaps this is how healthcare is delivered in other hospitals across Ontario, but that is no excuse for what we have and continue to experience. One way or another, when we have a few moments to breathe, we will share the details of our story with the public, and perhaps even write a guide to assist other families so that they can better navigate through what passes as healthcare for the elderly.

We all need to fight, shine a light on the glaring gaps of healthcare in Ontario and be heard loud and clear for our aging parents, relatives and friends, so that when they do enter the Ontario healthcare system, their journey is more supportive, compassionate, medically sound and less stressful.

We should be able to enjoy what time remains with our aging and sick parents, rather than spending our time fighting a system that has become much like that conveyor belt in a manufacturing facility, churning out patients like widgets.

Only quality is not the key benchmark or reason for being. It's there somewhere on the list, but not in the top five.

I question whether, for the elderly, it's even on the list.

Can Jellyfish Protein Enhance Memory Decline?

2010-07-28T09:41:00.002-04:00

When we were kids, our parents used to take us to Virginia Beach for our annual summer holidays. For two weeks, we would frolic on the beach, riding waves, building sand dunes, throwing our Frisbee back and forth.

That is until the dreaded jellyfish arrived. All you had to do was listen for the shrieks to begin a kilometer away, and you knew that you had precious moments before you had to get out. It was either that or swim amongst an onslaught of jellyfish. The other Quebecers and my family never really got accustomed to the jellyfish, so you would see most of the Canucks pull back onto the sand, as far away from the stomach churning mounds of jelly that would take over Virginia Beach every July/August. Not for us, we all screamed.

Now it appears that there might be an actual benefit, maybe enough to admire those mounds of jelly. In todays Toronto Star, we learn of upcoming clinical trials on using the jellyfish calcium-binding protein, to possibly improve the memory loss and eventual cognitive changes that are brought on by Alzheimers.

Although supplements are available today at some health stores, it remains to be seen whether the 2008 Nobel Prize for chemistry awarded to three scientists on the identification of the qualities of the jellyfish protein can stand up to more rigorous trials of people with more than moderate memory impairment.

Usually, I refrain from commenting about the many different drugs or trials conducted on treating any of the degenerative diseases, but for some reason this one caught my eye. Maybe because it involved a childhood foe that ruined many a day during our summer holiday.

We will watch this carefully and report back in the future.

Ode to Mom

2010-05-08T13:17:00.002-04:00

I penned this article to honour Mom, for Mother's Day, in Thursday's The Booster. Caregiver, mother, friend, wife, sister, aunt, supporter extraordinaire. There is no better, Mom.

"From the time she turned 18, my mother, Mary Kalaydjian, worked to support her family. Initially, to support her mother and sister, having lost her father at age 9. Then, along with my father, to support my brother and myself. Over the course of her lifetime, she worked for diverse organizations such as the United Nations, Canada Steamship Lines, and RJR-Macdonald. While raising us in the 80’s, she also went back to school to earn a ceriticate in Accounting from Ryerson Polytechnical, as well as to take numerous Human Resources courses in support of her career.

My parents, who worked and toiled hard so that my brother and I could go to university and enjoy what every immigrant hopes for their children, a better life. That took us from Montreal, to Mississauga in the late 70’s. Along the way, my father started community watch in our Mississauga neighbourhood after our home, along with 7 others, were broken into one Easter weekend. For his community work and support, he was honoured with a walkway called Garo’s Way earlier this decade, and featured in the Mississauga News, as it was the first of its kind for an individual still living.

Fast forward to 2004, when life changed drastically for my Mother and Father. Dad, who was diagnosed with Parkinson’s disease in the 90’s, came down with a spine infection that somehow caused dementia to kick in literally overnight. Shocked, shaken, and feeling like the rug had been wrenched from under our feet, we spent the better part of 11 weeks, rotating shifts, at Toronto Western, watching over Dad, to make sure he was safe and sound. My mother did not leave his bedside for the first 3-4 weeks, until we were able to get the hospital (thanks to the Patient’s Advocate) to designate a sitter to watch Dad during the overnight hours. We didn’t know what exactly had happened to bring on the dementia over a 24 hour cycle, but we took Mom’s lead, to make sure that we stayed on top of the specialists to get to the bottom of things. I know Mom took some breaks during those 11 weeks, but it seemed that she literally lived in that room, watching his every move, helping him with every task, loving him, supporting him and trying her best to create a safe environment for someone who had just lost all sense of things and was confused literally out of his mind. She willed and prodded him to get better.

Somehow, somewhere, even though they were very pessimistic, we survived that ordeal, only to realize that life had just taken a very serious and dramatic turn that would require an entire shift in our paradigm. Dad came home, requiring around the clock supervision, limited mobility, with a whole host of drugs, some of which had troubling side effects, and ongoing doctor’s appointments. To this day, he requires 24 hour care.

Mom, who was a careful driver lacking confidence, knew little about the on-going maintenance of a home, who had a rich and productive life, decided that she alone would be his caregiver. All 5’2” of her. Through the incideousness that is Parkinson’s disease, the darkness and muddiness of dementia, a broken hip that required 7 months in a horrendous long-term care facility, she was at his side, day and night. As any family that has a loved one that has either of these diseases will tell you, the nights are the worst, and Mom somehow took care of Dad during the day and most sleepless nights.

Our beggings and pleadings finally sunk in two years ago, when she hired a live-in caregiver to help her. That in and of itself has been an ordeal, as we have gone though over 12 caregivers, half of whom never brothered to show up for work.

Three years ago, previous back injuries finally took their toll on me, and I had to move in with my parents as I could no longer take care of myself. So Mom, who already had her hands full with Dad, now had me to care for as well. My friends and other relatives helped as much as they could, but it was Mom who carted me to one specialist after another, urging me not to give up, holding my hand, holding me up, in essence, until the answer finally came in the manner of a surgeon in Buffalo. Mom, the careful and reluctant driver, who had taken over all the driving duties for my Dad, actually drove me several times to Buffalo, even in the dead of winter.

It is because of this woman, my mother, Mary Kalaydjian, that my father continues to live, feel safe, and even thrives more than any doctor can medically explain. It is also because of my mother that I have a chance at some semblance of a life after spine surgery 16 months ago. And for all these as well as for so many other reasons, that I would like the rest of our community to learn about this incredible woman, my mother.

She has stubbornly hung onto her determination that her family be given their best chance at life. It is her fierce love, support, will, faith, dedication, selflessness, perseverance, and strength that has willed life and soul into our lives. She is our centre, our rock, our definition of Mother. At the end of the day, it is a Mother’s story and a love story. And in honour of her, and to somehow convey the depth of our love and appreciation for her, really feelings that cannot be conveyed in words, I hope that you will consider sharing the story of Mary Kalaydjian."

Patient's Advocate

2010-04-29T11:30:00.004-04:00

Hospitals are a difficult and maddening maze to traverse.

Add an elderly patient to the mix, and often, you are left spinning from trying to manage their fears as they try to adapt to an unknown environment, doctors and nurses that may not be familiar with your parent's other health issues (thanks to the lack of electronic health records in Ontario), an often hurried and incomplete assessment, and a rush to send the sick home sooner rather than safer.

If an elderly patient has the good fortune of having family members that can speak up for them, then you just may have a chance at getting respectable health care in a hospital, or any health care setting for that matter. This post is the first of several that will focus on our family's learnings from having experienced often the darkest corners and niches of Ontario's healthcare system.

Through Dad's several hospital stays, we have learned through trial and error when, how, whom and how often to push the buttons necessary for Dad to get the necessary health care he required. It was and isn't easy, requires intestinal fortitude and sheer will and determination that you just will not accept what doesn't and often isn't right.

With different members of our family playing good cop/bad cop, we have had to stay on top of nurses who, due to sheer lack of numbers, rush from room to room trying their best to assist their charges, but will ultimately be unable to respond to most patient's needs; doctors who don't always take the time to fully understand the patient's previous history, rushing to conclusions and assessments that may miss the mark entirely or only just so; the overuse of prescription drugs in trying to manage difficult patients (those that may require extra resources) so that those resources are freed up elsewhere; the consequences and hazards of the end of shift to new shift of nurses, whereby things get missed, forgotten or simply ignored; and the hospital administration that directs its staff to free up all beds as soon as possible, often far too early, thus placing your aging parent at risk.

You see, the elderly have it particularly difficult in a hospital environment. Confusion will set in for most elderly patients: confusion as to what ails them, unfamiliar hospital staff, new environments, foods that may not agree with them, new drugs that may have problematic side effects, and even language barriers.

Woo to be an elderly all alone, without family to speak for them, in this day and age, in any health care setting. They will be forgotten, ignored and missed. We have seen it time and again, for elderly patients in joining rooms to Dad's, when they either did not have families in town, or none in general. Our hearts often broke at the treatment they received, or short cuts that were taken by hospital doctors and staff. A couple of times we stepped in, but with no real ability affect any changes.

For Dad, we battled doctors, nurses, and administrators, sometimes making headway, and other times, just banging our collective heads against the wall. Until we learned about the Patient's Advocate role.

Every Ontario Hospital has a Patient's Advocate, a resource for any and every patient that can be called in to mediate or facilitate concerns or issues that a patient or family member has.

We have used such an individual twice, each time successfully to ensure that Dad's best interests and safety were protected, because with todays budget woes, we can no longer say that a patient's best interests and health is the overriding concern for all healthcare workers. It can't be, not in the manner in which emergency rooms are crowded, health issues missed, programs cancelled, diagnostic tests short-shifted, life-altering physiotherapy short-circuited or cancelled altogether, and nurses overworked beyond exhaustion.

The first time, we fought with Toronto Western Hospital for a sitter to stay with Dad overnight, as he had clearly become a danger to himself. We had spent the first three weeks rotating shifts ourselves, watching over Dad day and night. But we couldn't keep that pace up forever. He remained there for 11 weeks.

For a patient that was supposed to be on strict bed rest due to a spine infection, and one that had Parkinsons and dementia, they stood by as he repeatedly put himself in danger by forcing his way out of bed, standing and falling by the bed side, and roaming the halls at night. Clearly, we needed a sitter to watch over him, until the drugs took effect, the infection cleared, and he could once again place pressure on his spine. We were willing to do our part, but needed obvious help from them.

It was the Patient's Advocate that stepped in, arranged for this sitter, brought in a more helpful and supportive tone to our discussions and also suggested weekly meetings between the hospital staff on Dad's care, and our family.

We used the Patient's Advocate again, when two years later, Dad was hospitalized again, this time at Trillium Hospital, for a broken hip. The short term care facility there is abysmal, indescribable and to be avoided at all costs. We know of several families in the community that have had a family member end up there, that will not leave that member alone for any length of time. Often you would find husbands, wives, daughter, sons, nieces and the like camped out overnight and during the day, unwilling to trust the staff there with their ailing family.

The Patient's Advocate was used to communicate with a difficult and belligerent staff and nurses, who were more passengers than actual drivers of the healthcare that you expect in a short term care facility.

So, if you are concerned, upset or just scared when you find yourself in a hospital, contact the Patient's Advocate in the Patient Relations Department (see link as an example). They're there to help ease your situation, and bring some semblance of humanity back into hospital care.

Perhaps at some point, our healthcare workers, staff, management and leaders, will recognize that families energies are better expended dealing with serious health issues and concerns, and not in unnecessary and unhelpful battles with them. Until then, a Patient's Advocate can prove to be an important resource when hospital care becomes a reality.

The Delicate Task of Asking for the Keys

2010-04-13T17:46:00.003-04:00

One of the most difficult challenges for any family member or caregiver of a loved one who has any form of dementia, is to know when to step in, and when to lend a helping yet unobtrusive hand.

In the early stages of dementia, a gently, but firm hand is often necessary, as personalities start to change, forgetfulness blamed on being tired or denied altogether, and aggressive or paranoid behaviour creeps in ever so slightly. We figure, as long as they're not really harming anyone or only harming themselves, as we long as we keep a watchful eye, and clean up when necessary, what's the harm? Give them the space they need to adjust, calm down, retreat and start anew.

But most of us who have been through that stage onto the more worrisome and harmful stage of losing sense and awareness of how to complete a basic task, aggressive behaviour that becomes troublesome and hurtful to others, or the inability to follow or participate in a conversation, knows that inevitably, step in you must.

One of the most delicate step ins, is when to ask for the keys of the car, on a permanent basis. The American Academy of Neurology just issued a new guideline Monday, on when people with Alzheimer's disease or other forms of dementia should cease driving.

When you review the news release, you quickly get a sense that this isn't a simple blood test or a breathalyzer or an MRI that can definitively pinpoint a time, a symptom or an event. It does however, strongly suggest that with the doctor's lead, the caregivers or loved ones really must be called on to monitor the warning signals. In the past, the Grandkids rule has been used, in that if you wouldn't trust your grandkids in the car being driven by the patient with dementia or undetected dementia, then that person shouldn't be driving.

The new report suggests using the Clinical Dementia Rating (CDR) by your physician to test your loved one, with input from the family members or caregivers as to those warning signals: less miles driven than usual; collisions; aggressive or impulsive behaviour; avoidance of certain types of driving (night-time).

In the case of my father, when dementia kicked in literally over night, he or we didn't know what had hit us. It was shocking, terrifying, surreal and literally set us on a course where the learnings came fast and furious.

But when it came to the car keys, somewhere in his confused, bewildered and scared mind, he sensed that he was a danger to himself and others, and gave up the keys willingly and without hesitation. Even though I know, that not being able to drive was one of those fears that he lived with from a much younger and healthier age. Please not me, I'm sure he prayed.

You see, my father Garo, was and continues to always put his loved ones before himself. He didn't want to be responsible for any of us getting hurt. The fog of dementia always seems to provide just enough clarity for him when its one of us that's involved. Then again, that part of my father hasn't really diminished, dementia or not. It shines through, clear and proud.

Remembering Through Poetry

2010-04-09T14:49:00.003-04:00

Beyond Forgetting: Poetry and Prose about Alzheimer's Disease, a collection of poems and prose by authors who have for the most part served as caregivers for loved ones suffering from Alzheimer's.

It allows the writers and readers alike to be able to move beyond the forgetting that defines Alzheimer's and remember, honour and share the memories of how our lives have been touched by this disease. Memories that become dimmer as time elapses, but marked in the minds of the ones that are left behind.

Perhaps in the process, it allows for some dignity and respite from lives and souls lost.

Cycling and Parkinson's Patients

2010-04-07T15:56:00.004-04:00

Recent news on cycling and its' possible benefits for patients suffering from Parkinson, has highlighted just how much we still have to learn about this insidious disease.

While reading the NY Times article and watching the video on ABC News with family members, we were struck at how much it reminded us of my father: not that we ever understood the why, but Dad too can cycle on a stationary bicycle for 15 minutes at a time. Ask him to walk more than a few steps, and he stumbles or freezes. Climb stairs, and it becomes a risky proposition.

In the past, Mom, with the help of Dad's live-in caregiver, would try and take Dad for a daily walk down the block, or at least part-way. What started out as a full block 3 years ago, became the length of 4-5 neighbouring homes over time. Some days, even that was untenable.

Once the snow arrived, she would try and get him on the stationary bike indoors as another form of exercise. Interestingly enough, he would put the timer on for 15 minutes, and pedal away. Without any difficulty. And usually with a smile on his face. Perhaps because it allowed him to feel free and somewhat mobile?

What exactly is involved in cycling and retaining your balance on a bike, that doesn't translate successfully to taking a few steps in a hall, or to the washroom? It will take physicians such as Dr. Bloem, who through observation and openness to new ideas, to answer those as well as the many other questions that Parkinson patients and their families have. Here in Canada, we have Dr. Lang, the head of the Movement Disorder Clinic at Toronto Western, a leader in Canada in his own right. He also happens to be Dad's specialist .

Hopefully at some point, there will be many more tools available to make this disease more manageable. In the meantime, we continue to welcome news such as this.

Its one more hint of a piece of this puzzle called Parkinson's disease.