Sunday, 22 May 2016


This morning I was scrolling through facebook when a friend's post caught my eye. Eric Fischer is a disability Dad whose son is palliative and very complex. I always read Eric's sensitive and searingly personal writing - you may remember that I reviewed his book of poetry here.

Today Eric shared a TED talk, "Healed if Not Cured" by his son's own palliative care physician, Dr. Ron Sabar. Dr. Sabar's talk originates in Isreal, so the subtitles are in Hebrew. But the talk itself is in English and I urge you to listen. Dr. Sabar shares his insights into what constitutes a good death and his conclusions might surprise you.

The good doctor points a finger at medical practitioners whose own fear of death prevents them from healing and instead impels them to continue seeking cure even when that is futile. Dr. Sabar is not afraid of death. To his patients at their end of life, he says "Go home. Enjoy the love of your family. Enjoy your last days. We will be there with you to ensure that you are comfortable."

But I was most interested in the questions that Dr. Sabar asks his patients when they transition from seeking a cure to seeking a good death. He asks three questions: 1) Tell me what you know about your condition 2) Tell me what you're most afraid of and 3) Tell what would make you happy now.

The doctor described a patient he treated who was diagnosed with end stage colon cancer.  In a darkened hospital room, she lay with her family nearby. She said to the doctor, "Please help me die. I used to dance. I used to be an academic. Now everything is over and I just want to die." Dr. Saba asked her the three questions.  "Tell me about your condition." As expected, this young scholar knew everything about her disease. "Tell me what you're most afraid of." She didn't want to suffer anymore. "Tell me what would make you happy now." "To finish my PhD", she said.  It turned out that this young woman was only weeks away from finishing her dissertation. Years of research would not form any kind of legacy without completion of her degree.  So, the doctor said "Go home and finish your degree. Together, we will do everything we can to give you three good hours a day for a couple of weeks - enough time to finish your work."  This, they did and a few weeks later, the young woman received a letter from the university informing her that her research had been accepted and she was now a Doctor of Philosophy. A couple of days later, she died peacefully.

Not all palliative patients will have unfinished projects.  Perhaps they would answer question #3 with a wish to visit a family cottage one last time. Or to see an estranged brother in order to settle longstanding differences. These three 'Tell Me' questions are worth asking to any chronically ill or dependent loved one. Anytime. They're especially worth asking at times of transition such as to another level of care or to a new diagnosis. I'm going to visit my Mom today and I'll ask her these questions. On the way home from Mom's I'll stop in at Nick's and I'll ask him too. It's good to check in with people we love and I'm grateful that now I've got the right questions to elicit the important answers.

Wednesday, 18 May 2016


Let me tell you a story.  I have a friend who has a graduate degree, who loves her privacy but also dinner with friends and who loves to read as much as she loves going to the theatre.  My friend is a wheelchair user. She needs help for what healthcare professionals term 'activities of daily living or ADLs'. That's a fancy way of saying that my friend needs assistance to bathe, use the toilet, get dressed, prepare meals and get in and out of bed.  Recently, troubles with her home care service provider revealed to me what's wrong with home care today.

A few months ago, the agency providing personal support to my friend began telling her that it would take two people to wash her hair, due to "the weight of her head". Medically prescribed treatments would not be given if they were on an 'as needed' basis. Only regularly scheduled treatments during working hours Monday to Friday would be considered acceptable. If my friend had theatre tickets, no one would be available to help with her bedtime routine if it was after 11pm.  And that was only the beginning of the growing list of rules that make my friend's life unliveable in her own home. 

It seems that today, service provider agencies cannot meet the care demands of clients who have higher needs. Shrinking budgets and people with disabilities who are aging into even greater disability are merging with an aging demographic to put unbearable pressure on home care resources.  Individuals like my friend are faced with the choice of asking family members to provide essential care in order to remain in the community, or to go into a nursing home - an arrangement that comes with too much care. I can't figure out the profile of someone whose home care needs CAN be met in my province. Our society has come to this: there is not enough care available at home and there is too much in residential care homes, the only other alternative. Family caregivers are being forced to pick up the slack in order to keep their loved ones at home and offer them a good quality of life.

Last year I had the privilege of serving on the Ontario Expert Committee on Home and Community Care. We produced a report called Bringing Care Home and I'm proud to say that it's full of good ideas and practical solutions to challenges like those faced by my friend. But there are other financial innovations that we need to scale, as well.  A few months ago, the government of British Columbia raised the asset cap of people receiving disability pensions from $5,000 to $100,000.  And that's not a typo.  Now advocates in other provinces of Canada are lobbying their regional governments to follow suit. Having personal financial assets that are tax sheltered (such as in Canada's unique Registered Disability Savings Plan) or money earned through employment would not impinge on pension benefits so important for accessing medications and equipment. There are significant costs to having chronic illness or disability and these will never be entirely covered by pension checks. But personal assets combined with a major overhaul of home care provider systems will go some distance to giving people what they need in order to thrive in community.

Friday, 13 May 2016


My Mom is 94 and prone to falling, so I am pleased to host this important guest post by a regular guest blogger here at the Caregivers' Living Room. Thank you, Maria!

Falls are the leading cause of traumatic brain injuries among the elderly, according to the Centers for Disease Control and Prevention. Falls can lead to broken bones, head injuries and other serious physical trauma that is more difficult for the elderly to recover from than the average fall victim. Making sure that an elderly loved one doesn't fall is one of the most difficult requirements of caregiving. Even a vigilant caregiver may not be able to stick around at all times to prevent a fall. Fortunately, fall prevention technology is a growing industry that offers helpful ways to reduce the likelihood of a fall.

New developments in senior care have improved the lives of seniors as well as their loved ones. The use of fall prevention technology not only reduces the risk of a fall but allows seniors to live independently for longer. These technologies can also be used to give caregivers peace of mind when they are not around.

Shoe Sensors

Shoe sensors are a popular form of senior monitoring technology. These sensors are embedded into “smart slippers” and they detect changes in a person’s foot movement, transmitting a signal to a doctor or caregiver if there is cause for alarm. Although this technology isn’t on the market right now, there has been talk of more information being available about AT&T’s smart slipper prototype in the near future.

Carpet Sensors

Carpet sensors work similarly, but they sense changes in movement without requiring that the patient remembers to put on shoes. Sensors inside the carpet monitor the amount of pressure being exerted on the floor. If a senior falls, the increase in pressure will trigger an alert that allows assistance to come. Carpet sensors also measure the stress on the bridges of the foot and can detect the weight and location of any object that hits the floor.

Security Systems

Security systems installed in the home can alert caregivers if a patient with dementia tries to leave the home. Many systems offer various components and attributes that would aid in your senior’s well-being, which you can learn more about through different websites. It is common for elderly patients who suffer from dementia or confusion due to traumatic brain injuries to attempt to wander in the middle of the night. Wandering can be emotionally traumatic and lead to injuries, so it is important that caregivers are notified as soon as a door or window is opened.

Wearable Technology

Wearable technology scaled down to the size of a button can be used to detect whether the wearer is sitting, standing or walking. An Australian company has manufactured a necklace with a built-in sensor that helps build the reflexes of the wearer so he or she falls in a safer way if an accident occurs. Seniors can use a video game console to play a simple training game that helps improve reflexes and prevent the likelihood of a fall. Personal airbags have also been introduced as a potential solution for making falls less damaging when they occur.

Medical Alert Systems

Medical alert systems can help independent seniors contact emergency services if an emergency occurs. Many of these devices are compact and can be worn around the neck or held as a button to push in case of a fall. Medical alert systems are ideal for situations in which a senior may be unable to reach a phone to call for help. These devices also contain GPS to locate an injured senior who does not know where they are.

Fall prevention technology may not be perfect, but a stream of innovative entrepreneurs and researchers are creating lively competition for companies who seek to make the world safer for seniors. By adopting one or more of these fall prevention technology options, caregivers can reduce the likelihood that a patient will fall and significantly decrease the risk of death or serious injury if a fall does occur. For seniors, these technologies could mean the difference between constant supervision and the ability to live a more independent life.

Maria is a freelance writer currently living in Chicago. She has a Bachelor of Arts degree in English from the University of Illinois at Chicago with a minor in Communication. She blogs about environmentally friendly tips, technological advancements, and healthy active lifestyles.

Tuesday, 10 May 2016

Happy Nursing Week to All The Nurses on Team Nick

Over the years, we have welcomed nurses into our family.  Community and long-term care nurses are a special breed. They understand teamwork with family and how to make clinical nursing seem like normal home life.  Nicholas has had many, many hospitalizations and we became good friends with our inpatient nurses as well. Our favourites would sing Polish folk songs, help us play tricks on the doctors, give us hugs and make us laugh when we were tired or afraid. For families like mine, our nurses are angels from heaven.  

Happy Nurses Week to all the nurses who have helped take care of our Nick, both in hospital, at home and now at his residence. Thank you!

 Our home nurses helped the family form a ball hockey team for Nick's birthday in London. Thank you to Jade, Dania, Angela and Melinda!

It's fun when a nurse is a guy who loves sports!

If a nurse helps to cook junk food, that is a very good thing. (Top marks from Nick!)

Nurses sometimes take time off to have babies but they always come back to work and to visit! (Thank you!)

And even when they move away, they come back to visit.

In community and long-term care, nurses become friends of the whole family. We trust in their clinical skills and in their true affection for our son. That combination of knowledge, training, collaboration and love is what makes our nurses so very special. Thank you, everyone!

Saturday, 7 May 2016

Motherhood: The Currency of Need and Love

At the moment of birth, there is suddenly stillness and a collective intake of breath. There is recognition by everyone that a momentous and transformative event has taken place – a miracle.  A new baby is placed on a mother’s breast and life begins. This is the baby’s first caring relationship and it represents the sacred and pure headwaters of every other caring relationship that will come later on in life.  At the moment of birth and the days following, it is the mother who is the producer and director of this delicate and vital dance. She teaches the first and most important lesson in being human: basic trust.

As the baby grows, a mother shares her love and care with others.  The family and the network begin. In the earliest days after birth, the father and inner circle of loved ones will ensure that the mother is unburdened by concerns other than those of her baby. Everyone understands that mother-baby bonding, nursing and close physical contact is of central importance to the health and wellbeing of these two principal players who have been through so much together in the gestation and birth process.

As weeks pass, care is shared and others develop their own close, caring relationships with baby.  A different family configuration begins to settle into familiarity with a new member in it. Roles shift and change.

The mother retains a central role. She is the vigilant worrier, the multi-tasker – she remembers shoe sizes, food preferences and school assignment due dates.  As children grow to teenagers, she might become a confessor and confidante. All of these roles, she assumes on the basis of need and love. Need and love – that is the currency of motherhood.

If a mother is lucky enough to welcome grandchildren into her life, she will join the helpful inner circle of loved ones whose role is to support the new mother and baby. A new life cycle begins.

When a mother gets old and needs help, need and love begin their exchange activity again, but differently. Who is helping whom may have reversed, but new lessons are being taught and learned.

Mothers are the warp and weft of our most important, loving relationships in life. Their work is vital and central to all we know about how to live a life that is rich in the love of friends and family.

Happy Mother’s Day, Everyone!

Monday, 2 May 2016

Senior Living Considerations

It's my pleasure to host this guest post. The topic interests me particularly because recently, we had future planning discussions and tours of local senior care homes with my Mom. In the end, we decided to continue supporting Mom in her independent retirement community, even though her needs are increasing. For the time being, she chooses to pay privately to supplement her care. Having these discussions and knowing what's out there in the way of options though, was a really helpful exercise for our whole family.

Senior Living Considerations
As any person ages, their needs and physical abilities may change. For this reason, it is prudent to consider some alternative living situations to accommodate lifestyle, disabilities, and personal preferences. From living in a like-minded senior community to staying in the family home, there are some things to consider when helping your loved one make these tough decisions.
Caregivers should consider the following when trying to help a senior facing a possible move:

The benefits of living in a senior community.
A senior community allows residents to be with individuals who are at the same stage of life, which could foster engagement and promote socialization. There's a feeling of community, security and safety found in these senior living residences that other apartments, condos, or subdivisions may not provide. Even seniors that are reluctant to move may take some comfort in a senior living community. Some other perks of taking up residence in a senior community include the following:
-        Avoiding isolation with close neighbors and supports.
-        Staying active and engaged with like-minded individuals.
-        Living with more ease and simplicity in a downsized situation.

Considerations for living in an independent living home.
When asked, many seniors remain firm on the fact that they want to live independently in their own home. Downsizing to a more manageable sized residence could be a practical way to make this work, or some simple strategies could make the family dwelling safer and more secure for those that choose to remain there.
Consider the following questions when helping a senior make decisions regarding their current home:
-        Where do they live? Is the location of the current home practical and is the floorplan design flexible for changing mobility needs? Be sure that the senior has access to the services, providers, and places that they need. Also, be sure to make an inventory of the current home to determine what, if any, work needs to be done or modifications that should be made to make the home safe for those living there.
-        What are the accommodations? Does the home have the things the senior will need? From beds to ramps, be sure that the home suits the seniors need, while providing them full-access to the bathroom, mailbox, kitchen, or other areas of the home.
-        Are there any activities or amenities? What types of services are nearby? Make sure that the senior lives in proximity to markets, recreation facilities, providers, and caregivers. For instance, be certain that your senior loved one will have easy access to public transportation if they do not drive.

Some other things to think about.
Another option is an assisted-living facility that provides on site nursing care for residents who are recuperating from an injury or who have physical limitations. These accommodations might be short-term housing during recovery, or longer-term living situations for seniors who need this level of care.
Many innovative care communities are adopting a step-down approach which incorporates independent living options with assisted and skilled-nursing models. These rooms or apartments are on the same property, so an individual who needs a bit more help is able to get it without leaving his familiar community. Many older individuals worry that an extended stay in a nursing home or hospital may result in them losing their home.  This step-down model eliminates this concern and ensures that residents will be able to live on the premise for the rest of their lives, which brings a sense of security in the fact that they won’t ever need to move again.
Talk with your loved one about their wishes and where they want to spend their golden years. From independent living to a senior community, options abound based on the resident’s age, physical needs, and personal preferences. Clarify what the senior sees as the most pragmatic option and listen when they verbalize concerns. Tours of various dwellings and facilities may help to put some minds at ease during this process.

Author Bio:

Daniel Lofaso is the Community Outreach Manager for Lourdes Noreen Mckeen, a retirement and independent living facility in West Palm Beach, FL.