Saturday, 1 August 2015

So That's It! How To Be Happy


Recently I had a conversation with our family GP.  “Why do you take all the complex patients?”, I asked.  “You are amazing - I’ve heard you advocating on the phone for frail seniors who have no one else and when other GPs turned our family down because Nick is too complex, you said YES.  Why do you say yes when other doctors say no?”  He shrugged.  “I’m OK with uncertainty, I guess.”  I could have hugged him.



I’ve been thinking a lot about that short conversation and what it means to me.  Of course I’m grateful for our wonderful family physician.  I wonder if we shouldn’t be offering a course in embracing uncertainty to all prospective family doctors – and maybe to family caregivers, too.  And I’m thinking about my own feelings about uncertainty.  Am I OK with it?

To be honest, I hate it.  In the driver’s seat is where I want to be and if others are driving, I want them to handle the wheel MY way.  And that’s the crux.  So I can understand those doctors who turned us down, I really can (even though I find it infuriating).  It's hard being OK with uncertainty.  In caregiving, we want to be in control, yet so much of caregiving is uncontrollable.  We believe that we can live our own life and the life of our loved one too.  Any other approach feels dangerous and even possibly life threatening.  Hasn’t every caregiver worried, “What will happen if I look away… if I become distracted?”

I’m not referring to urgent situations where taking total control is required – or when we must relinquish all of our control to an emergency health care team.  I’m talking about long-term care, when care is given and received continually over months and years.  I’m talking about the voice in the caregiver head that says, “this is the way the care must be done”.  When others offer to help but perform care and homemaking duties differently, it feels unhelpful and for some, even intolerable.  Because any other way destroys the illusion that life has changed from the way it used to be.  Any other way is imperfect. 

I am guilty.  I admit it – I have suffered the anxiety of the perfectionist in the midst of my son’s highly volatile health care needs.  I have tried my best to morph the uncontrollable into something under my strict command.  It didn’t work and I just made myself unhappy and resentful.

I learned the hard way that letting go of control and making peace with uncertainty is the key to feeling relaxed and even happy most of the time.  There are various names for this trick of the mind; some call it ‘giving it to God’, while others might say they ‘live only in the moment’.   Putting out the welcome mat for uncertainty doesn’t mean giving up on excellence in caregiving.  But it does mean that excellence in caregiving doesn’t necessarily lead to excellent outcomes in your loved one’s health.  Accepting that random and unknown elements can factor in to how things happen in life is the key for me. 


So, I still make meticulous plans and I still watch my loved ones very, very carefully.   But I know that whatever course of action I think is best may turn out to be wrong – I accept that I cannot know the future.  I know that I do my best and that my best is good enough.   My shoulders are down and I can smile, confident that I am imperfect.
Post-script: This blog post was a reflection on the terrific podcast 'Letting Go - A Valuable Lesson in Family Caregiving' on the Caregiving Network.  

Friday, 24 July 2015

A Tragic Death, A Cautionary Tale and Lessons About Protecting Our Loved Ones

Guy Mitchell.  Guy Mitchell.  Guy Mitchell.  I can't get that name out of my head.  And when I think of Guy, I am afraid for my son, my mother and my future self.  I am afraid for everyone who is at risk of being vulnerable and 'cared for' by the state, behind closed doors.



Guy Mitchell had developmental disabilities and was 38 when he died in 2012.  He drowned in an outdoor cistern of freezing cold water outside his group home in Ancaster, Ontario, as he was trying to retrieve drinking water.  A representative of Hamilton Police said officers reported that the conditions at the Ancaster home were some of the worst they had ever seen. There were signs of neglect everywhere, and they included no heat, or running water; no food in the fridge, soiled clothes all over the floor as well as alcohol bottles and ashtrays everywhere.
Yet, the home received a passing grade from the care agency Choices just days before Guy died. A number of complaints about the home over the year up to his death produced no investigations, no police reports and no reports with the ministry of community and social services.
The story of the Ancaster group home is a sad, cautionary tale of total failure to protect Guy and his vulnerable roommates.  When Guy entered his Ancaster residence twenty-six years ago, Bill and Karen Santor apparently ran a well kept and caring home for their charges until they died and daughter Keri-Lynn Santor assumed her parents' responsibilities.  Now missing, Keri is apparently a heavy drinker with a police record whom another family member says may be paranoid schizophrenic.   An agency called 'Choices' received Ontario provincial funding to operate and oversee this and other group homes in the region.  Two days before Guy died, staff at Choices gave Guy's group home a passing grade.  Dr. Jack Stanborough,  the coroner in Guy Mitchell's case was not impressed by Choices and he said so during his inquest. 

"I think Choices and its conduct is shameful," he said angrily in the morning to a courtroom full of lawyers while the jury was absent. "To hide material and produce it halfway through the inquest is shameful.


"I don't understand the disrespect for Guy Mitchell, for his family, for society, for this process ... Am I upset? Darn right I'm upset."
The sad case of Guy Mitchell is terrible but it teaches us lessons about protecting our loved ones who are vulnerable, including seniors in residences where abuse might occur. Guy Mitchell lived in deplorable conditions and died because no one was really looking at his home environment: no one in the government ministry that funded his home, no one in his family, no one in his neighbourhood, no one in the agency that operated the home. No one saw and no one knew.  
If we want to protect vulnerable people from the isolation that can lead to exploitation, we need to create models of support that ensure caring and responsible eyes are on our loved ones and their care providers.  Agencies and governments will not love our loved ones and sometimes, tragically, they will not protect them.  Parents of children with disabilities and children of the vulnerable elderly need to visit often, ask questions, drop in, check the fridge, look at bank statements, inspect cupboards, examine medications and ask to see written records.  We need to look carefully at our loved ones and ask them questions.  If we can't be there in person, we need to assign oversight responsibilities to others and then keep in close touch.  One Vancouver-based friend had a father in Scotland whose health was failing.  It was a visiting osteopathic therapist and a neighbour who became my friend's eyes and ears.  My friend used the same online care coordination tool that we use in my family, Tyze Personal Networks, to watch over his Dad and keep him safe.  Read my friend's story in the Toronto Star HERE.  It's a much more hopeful and reassuring story than poor Guy Mitchell's.  
If those providing care to a vulnerable loved one won't share information or allow unscheduled visits, there is something very wrong.  We ALL have a role in being vigilant to protect our family members, neighbours, friends and colleagues receiving care. We need to advocate for support systems, businesses, governments and municipalities to make it easier, not harder, to befriend those who are isolated in our midst.  Lives depend on it. 
Post-script:  Every member of our son's staff shares information and updates with us on a daily basis.  Drop-in visits and phone calls are encouraged and regular planning meetings include family.  My Mom's paid helpers have become friends and share information with me and my sister on a daily basis.  I can't say that accidents will never happen to my son and my Mom, but I know that everyone who cares for and about them talks to each other in a coordinated circle of care. And if something bad happens, it will be an accident despite best efforts to provide excellent care.

Wednesday, 22 July 2015

Why Caregivers Must Take Hearing Loss Seriously



Guest Post



Hearing loss is an invisible condition. Not everyone can express the fact that they aren’t hearing well, and still others are in denial. That’s why it’s so important for you to be able to identify signs that your loved one might not hear as well as they could and understand that other health conditions could lead to or result from hearing loss.

If untreated hearing loss can be identified, the next step is often persuading your loved one to acknowledge it and take action to correct it. While it may seem difficult, this challenge is not insurmountable. If the subject is approached from the right angle, you can successfully empower your loved one to improve their own overall health and happiness.

Why is recognizing hearing loss so important?

Untreated hearing loss can often hide behind the other difficulties it creates; you might notice a symptom but not understand that hearing loss is the cause. For example, while you may notice that your loved one has become depressed or withdrawn, you might not think to connect these behaviors with the possibility that they can’t hear well or realise that they’re backing out of social situations for this reason.

In fact, untreated hearing loss has been connected with many other health conditions such as depression, dementia and cognitive decline, hypertension and stress, and balance issues. If your loved one is already dealing with these conditions, hearing loss could exacerbate them. What’s more, conditions like obesity, diabetes, and heart disease can also affect a person’s hearing ability.

However, using hearing aids to address hearing loss can help to counteract these effects. Research has shown that those who use hearing aids to combat hearing loss have a better quality of life. And isn’t this the goal of every caregiver – to do everything possible to make their loved ones’ lives better each day?

What are the most common signs of hearing loss?

We can’t always rely on loved ones to tell us, or even recognise, that their hearing ability is less than average. Caregivers should therefore be on the lookout for common signs. It might be time for a hearing test if your loved one:

·       Frequently asks people to repeat what they’ve said
·       Turns the phone or television up too loudly
·       Seems to be withdrawn lately or shies away from social conversation
·       Has more trouble with higher-pitched sounds and voices than lower-pitched ones

How can you persuade someone to address hearing loss?

Once you know that your loved one may have hearing loss, the next step is to urge them to get their hearing evaluated and see if hearing aids are the right solution for their needs. The problem is that trying to force someone to see a hearing health professional can sometimes be like pushing against a brick wall. It depends on the individual, but there are several different ways you can approach the subject in order to gently nudge them and help them decide that they want to get a hearing test.
First, prepare yourself for the most common objections people have to addressing hearing loss. Your loved one might say they’re too young to be lose their hearing, believing that it only happens to “old people.” However, hearing loss affects people of all ages. In fact, 60% of all Americans with hearing loss are in the workforce or educational settings.

Your loved one might also think that hearing aids are cumbersome, embarrassing, or otherwise interruptive to their daily life. But today’s devices integrate seamlessly into any lifestyle. They also come in different styles, some resting so far in the ear canal that they’re virtually invisible.

You can also try persuading your loved ones with facts and numbers. Explain the connection with other health conditions as noted above, and make sure they know that they aren’t alone. According to current statistics, hearing loss affects:

·       20% of adults in the U.S.
·       67% of people over age 75
·       33% of people over age 65
·       14% of people ages 45-64
·       15% of children ages 6-19

You can also explain to them that even if they don’t believe they have hearing loss right now, annual hearing evaluations are just as highly recommended as annual physician checkups and semiannual dental cleanings. It’s important to track your hearing health so that you can notice any changes and take action on them right away.

Finally, it’s often a great idea to go along to your loved one’s hearing evaluation and get your hearing ability tested as well. This could help them feel less nervous about the process, and it will show them how serious you are about being proactive regarding hearing health. After all, annual hearing tests are recommended for everyone, remember?

As a caregiver, you make meaningful sacrifices and face hurdles every day. Hearing loss may be one of those hurdles, but it doesn’t have to be a big one. By knowing the signs, understanding the importance, and taking appropriate action, we can help everyone to live life to the fullest and most rewarding extent possible.


EarQ is a nationwide network of independent hearing healthcare providers that utilises innovative business and marketing practices as well as national public awareness efforts to advocate for excellence in patient care. Through its 1,400 hearing healthcare provider locations nationwide, EarQ helps provide greater access to quality hearing healthcare services and products.

Saturday, 18 July 2015

The White House Conference on Aging - How Technology Will Shape Our Future



Guest Post by Maria Ramos



In 2011, the first baby boomers turned 65. Every day since then, thousands more reach retirement age. By 2050, 42% of American households will include someone over the age of 70. The recent once-every-ten-years White House Conference on Aging took place on July 13th and could not have come at a better time. In addition to an address by President Obama, the conference discussed caregiving, financial security, elder justice and introduced new and promising innovations in technology that will allow seniors and their caregivers more ease, more safety and most importantly, more independence.

Technology was front and center as the White House offered a live stream of the conference to anyone who was interested in attending but could not travel to Washington D.C. This set the tone for what an important role technology will play in the lives of those who are of retirement age. From medication management to personalized home security to 24/7 access to in-home health monitoring, technology is opening new doors for seniors and caregivers that is becoming more and more necessary as life-expectancy extends, and the gap between the generations narrows.

For instance, a new development in medication management includes pill packets that are pre-measured and personalized with instructions for each dose. For those who take, or administer multiple medications daily, it’s a great way to save on time and cut down on missed doses. In addition, there are mobile apps and other technology that monitor when a patient takes their medications, which is extremely helpful for Alzheimer’s patients and their caregivers. Digital health services from home security systems can help alert family members or caregivers, via a mobile app, of all of their loved one’s activities — eating, bathing, sleeping, medication and whether or not they leave the house. This ensures the patient’s safety, while allowing them to stay in the comfort of their own home and maintain a certain level of independence.

Of course, costs are always a consideration, especially when it comes to senior care. President Obama addressed how Medicare, Medicaid and the Affordable Care Act have assisted with the rising costs of long-term care. The White House has also called on the Department of Labor to forgo profits in the best interests of retiring employees. In addition, President Obama tasked the Department of Agriculture to grant greater accessibility to affordable nutrition and the Department of Housing to ensure that it reviews its policies on HUD access. The Department of Justice was also tasked to review the VOCA Victim Assistance Guidelines in order to make certain that the support of social and legal services to elder victims of abuse, financial exploitation, fraud, and neglect is made available.

These innovations in technology, combined with government cooperation, open up possibilities and opportunities that will benefit seniors and their caregivers for generations to come. Utilizing technology to ensure that our aging seniors can maintain their independence is the greatest way we can give back to them. It’s never too early to plan for your loved ones, or for yourself.  And, as options in the public and private sectors continue to grow, our golden years couldn’t look brighter.

Maria Ramos is a writer interested in aging and technology, comic books, cycling, and horror films.   She currently lives in Chicago with her two pet turtles, Franklin and Roy. You can follow her on Twitter @MariaRamos1889.


Saturday, 11 July 2015

The Red Book That Is So Wonderful

There's a red book that's been sitting on my desk for months.  It's one of many that have been sent to me for book reviews.  That pile got smaller recently when I came to the cottage for a summer break of reading and relaxing.  I wish I had read this book sooner, because it has changed my thinking about living, dying, dependency and care.  And it made me cry tears of...what's the word for when you read a passage and think "oh, oh, oh".  That happened a lot.



We Know How This Ends: Living While Dying by Bruce H. Kramer with Cathy Wurzer is the red book.  It's mostly written by Bruce Kramer, a professor of education who became stricken with ALS and subsequently wrote a hugely popular blog about his transformation, both physical and metaphysical. Cathy Wurzer is the NPR journalist who interviewed and befriended Kramer.  She provides counterpoint reflections on her own father's dementia diagnosis and what it meant to her.

But this book isn't about ALS or dementia.  No, not at all! It is about what it is like to die.  And the title post-script says it eloquently - it is about living while dying.  I have often wanted to ask palliative patients, "What's it like? What do you think about? What is the meaning of life after all?"  Bruce Kramer tells us all that and more.

It's hard to write this review because there is so much I want to say - and my copy is marked on nearly every page with an asterisk or notation such as 'yes!'.  Kramer says, for example, "I find great comfort in .... the ability to balance between accepting one's aging and mortality and viewing one's life realistically and without despair."  Kramer reflects that for him, "ALS insists I focus on the juxtaposition of loss and growth." Viewing my life realistically and without despair as I focus on the juxtaposition of loss and growth pretty much sums up my most fundamental challenges as a caregiver.

And perhaps these are not just challenges of the palliative, the infirm or the caregiver - they are the challenges of being human. And Bruce Kramer is deeply human.  He offers us guideposts to being comfortable in the human condition... being at peace with our own mortality.  Yet, he is human.  After two years of his body being ravaged by ALS, Kramer writes simply, "The fact is that I have handled nothing." But then he circles around again and says, "I can mourn each loss, but I must not allow myself to become comfortable on the new plateau where it lands me, for that is not the way of life we are granted."  Kramer says often that ALS is just normal living and dying speeded up and I believe he's right.  There are so many philosophical lessons here for caregiving about reconciling hope and realism, growth and decline - all conundrums I seem to wrestle with in slow motion.

There are so many true words of wisdom in this book.  I can only urge you to buy and it read it for yourself.  But, I'll leave you with this: "I would argue that bravery goes beyond the desire for a good death.  It is trying to live a good life when your old version of life has been kicked in the teeth."  And I know that caregivers everywhere feel a sting in their mouths almost every day.

Tuesday, 7 July 2015

A Bit About Me and My Caregiving

Recently, I joined the blogging team at The Caregiver Network, a terrific site that's chock full of opinion, information and video links for caregivers of all types and ages.   By way of introducing me to their site, their communications director asked me about my background.  I thought readers here in The Caregivers' Living Room might be interested to know more about me, my family and my work too.  So let's pour the tea and chat!

1.Tell us about your family caregiving responsibilities.
My husband Jim and I have two children, Nicholas (26) and Natalie (23).  Nicholas has severe cerebral palsy and is medically complex which means he requires 24 hour one to one nursing care.  Until four years ago, we provided that care at home.  Now Nicholas lives in a nearby care home and we visit, telephone or skype almost every day.  My mother is 93 and lives a couple of hours away in a seniors’ home.  She is becoming frail, so my sister and I share her care.
2.  Tell us about your book The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving – why did you write it? 
My experience has been one that I would describe as ‘extreme caregiving’.  Over his lifetime, Nicholas has endured multiple surgeries, frequent illness and chronic pain.  In spite of his challenges, Nicholas maintains a positive attitude and a strong ambition to pursue his interests.  During the years of caring for Nicholas at home, I became progressively more isolated.  I believed that our life was profoundly different from others’ …. until one day a conversation prompted me to consider writing a book.  A friend told me about the work of Amartya Sen, an economist who won the Nobel Prize for economics in 1998.  Sen developed ‘The Capability Approach’, a way of understanding poverty in India that threw out household income as a yardstick for measuring human wellbeing and instead asked, “How can people living within circumstances of great hardship have a life they value?”  With the lens of Sen’s Capability Approach, I sensed immediately that our family caregiving experience fell into the realm of ‘normal’ experience.  Everyone would like to know how to craft a life that one values, given one’s unchangeable realities.  Our family’s answers to that question might help policymakers and families better support caregivers of all sorts.
3.  You talk about both disability care and elder care.  Why?  Do you think these types of caregiving are the same or different?
I write about eldercare and disability care because I have personal experience in both those areas.  But I believe that we must find common ground across all caregiving experiences in order to form a movement for change.
4.  Is it possible to be happy giving care when your loved one is struggling?
Yes, but I believe that happiness will be found in the moments between anxiety, sadness and sometimes even grief.  Happiness might be found in the restful sigh of a loved one when a powerful pain medication finally takes effect.  Or it could be in sharing a memory with your loved one that brings with it smiles and laughter.
5.  What are the most important things you have learned in your life of caregiving?  
Caregiving is a job that is full of thousands of small tasks. Each task in itself feels perfectly doable, especially because we (usually) love the person we are caring for. But over time, these tasks together can be exhausting.
  •  You can’t do it alone. Make a decision to say ‘yes’ every time someone asks to help.
  • Remember, not all friends are good at being helpful. If you find that some friends or family don’t offer, just accept that part of their personality and try to move on asap.
  • Coordinate the team using facebook, email or one of the terrific new software platforms for caregiving such as Tyze.
  • Ensure that the whole team understands that caring for and about you, the caregiver, is a top priority. When a baby is born, everyone instinctively understands that the mother must be cared for so that she can look after her baby. The same principle is true when giving care. Someone else should look after walking your dog and collecting your children from school so that you can be with your relative in times of crisis.
  • Between crises, let the team share the care and visiting responsibilities so that the principal caregiver can have a break. These breaks will enable the caregiver to hang in for the long term without burning out.
6. What’s the one question you wish caregivers would ask but often don’t?
The question I wish caregivers would ask more often is ‘How can I approach my caregiving as a strong and sustainable team challenge?’
7.  What’s the greatest caregiver myth?
If I don’t do everything myself, I am a failure.
This is perhaps the most damaging belief for caregivers and care receivers alike. If Steve Jobs had believed he could create a computer company with no employees, Apple would not exist today. Care, like all complex tasks, is best delivered as a team. This doesn’t mean that a different person needs to bathe your loved one every day or cook in your kitchen. It means that people need to support YOU, the caregiver, to thrive in your role. That support will look different for every caregiver, but the constant is that there is a team and the caregiver is the team leader.