home & longterm care 2016 july edition

Self-managementof chronic disease

Home modifi cations

Why nutrition matters

July 2016 www.homeandlongtermcare.ca

See page 5

TheCaregiving

journey

Because YOUCARE

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2 Home & LongTerm CARE | July 2016

3:49

Cover story: The caregiving journey 4 Editor’s Note

8 Home modifications

14 Why nutrition matters

24 Spotlight on Care Coordinator

30 Caregiver SOS

contentsJuly 2016

22 26 28

18

5

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Friends for life Who cares for the caregiver?

Self-manage disease

Exercise for every age

Dementia friendly homes

Healing with heart


THE ONE THING the 3.3 million estimated family caregivers in Ontario – though I would say that number has risen since the report in 2012 – have in common is that each of their caregiving journeys is unique. No two caregivers have the same experience.

This month’s cover story focuses on episodic caregiving – which often involves caring for a loved one that involves periods that require intense caregiving and periods of recuperation where little caregiving is required. These episodes often come with no warning, making them difficult for the caregiver to manage.

Because each caregiver is unique, we try to include a variety of articles in an effort to provide all caregivers with helpful informa-tion to aid them on their own journey.

This month we welcome two new monthly columns.

Keep Moving is a column focused on physical activity and healthy living written by Retrofit Pilates Founder Barbara Grant. She can also be seen weekly on Rogers television as the host of Shape Up with Barbara Grant.

We would also like to welcome Amanda Laird as our resident holis-tic nutritionist. Amanda is a Toronto-based writer and speaker who believes that delicious food and healthy food aren’t separate concepts. You can send your nutrition questions to [email protected]

As always we welcome your feedback and requests.

Kristie Jones, Editor, Home & Long Term [email protected]

Editor’s Note

Home and Long Term Care is published for consumers who are supporting and/or involved in home care or long term care. It is available free of charge from distribution racks in hospitals across Ontario.

The statements, opinions and view-points made or expressed by the writers do not necessarily represent the opin-ions and views of Home and Long Term Care, or the publishers.

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July 2016 | Home & LongTerm CARE 5

FAMILY CAREGIVING can sometimes feel like being on a roller coaster – you go through ups and downs as the person you care for goes through different challenges. Then there are dips and curves as the pressures from other parts of your life – children, work, finances - compound your caregiving role. Now imagine this – the person you support as a caregiver has an episodic

health condition. Sometimes they don’t need your help at all, and other times, with little or no warn-ing, you must drop everything and be there to sup-port them. That is the life of caregiver for someone with episodic health issues. They are basically on the “behemoth” of roller coasters. Sometimes they are rising slowly and are hopeful, only to suddenly plunge into a new set of challenges.

The caregiving

The roller coaster that is episodic caregiving

Continued on page 6

By Lisa Levin

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journey

There are many different types of health condi-tions that are episodic – here are some examples: HIV/Aids; multiple sclerosis; crohns/colitis; chronic fatigue syndrome; epilepsy; hepatitis C; many men-tal health conditions including depression, bi-polar disorder and schizophrenia; severe migraines; par-kinsons disease and more. In fact, almost half of working adults with a disability have at least one of these conditions

Meet Richard and Maya. They have been married for 10 years. Richard is 34 years old and works at a national bank. Maya is 35 years old and works as a human resources professional in a medium-sized technology company. They have one child and are hoping, one day, for a second. At least twice a year for the past two years, Richard has had to take time off work to look after Maya, who is living with HIV. This year is worse than others, and both Maya and Richard are on their fourth request for time off.

Maya, in particular, is starting to worry about job security for both of them. Neither of them can pre-dict when Maya will be sick or for how long, and there is no way of knowing how sick she will be. Maya and Richard are both in their prime working years and neither has any connection to the ‘care-giving community.’

There are no statistics on the profile of episodic caregivers such as Richard since the concept itself was only recently identified. However, we can pin-point a number of common elements for episodic caregiving. They include:

Early onset and long term – people with episodic disabilities are often young and middle-aged adults and can live for 50 years or more with the disability, which in turn impacts the length of time, nature, and demands of caregiving.

Traumatic – The diagnosis of an episodic disability often marks a sharp and sudden demarcation in the life-course.

Fluctuating periods of acute illness/flare-ups – The illness is punctuated with times of flare-ups that may require acute medi-cal care and periods of recuperation.

Unpredictable trajectory – This is a key challenge impacting the caregiver and patient’s ability to plan for the future.


Continued from page 5

The caregiving journey


Lisa Levin is the Chair, Ontario Caregiver Coalition.

People with episodic disabilities... can live for 50 years or more with the disability, which in turn impacts the length of time, nature, and demands of caregiving

Invisible and ambiguous disability – In many instances, the person living with an episodic dis-ability will exhibit few overt symptoms. Employers, friends and family may be unaware of the illness or may not be sympathetic to reports of fatigue or other ‘vague’ symptoms associated with illness. Family caregivers reported feeling stigmatized and considered to be abusing time off work in order to care.

Ongoing adaptations – The unpredictable, fluctu-ating and possible degenerating aspects of episodic disabilities require that the individual, the caregiver and other close members of the family system con-tinually adapt, sometimes over many decades, to the

physical, emotional, cognitive and financial changes that the illness generates.

The next time your colleague at work or a neighbor takes time off work to care for someone unexpect-edly, do not underestimate the importance of their role, or the toll it takes on them. Start to look around for those “invisible” disabilities and you may begin to notice the large number of Canadians, such as Richard and Maya, who are impacted in one way or another by episodic conditions that become acute with no warning. The more aware we are of epi-sodic caregiving, the greater the chance that these caregivers can obtain more support and understand-ing for their important role. LC


THERE ARE MANY REASONS to modify a home, which may include an individual’s physical, sight, hearing or cognitive challenges. Home modification involves adapting a home so that a person with disabilities can perform the activities of daily living – bathing, dressing, eating, trans-ferring, mobility and continence – as safely and comfortably as possible, while maintaining some degree of independence. Home modifications are critical to reducing falls.

Key problem areas in the home:•Stairs and steps•Bathrooms•Kitchens•Basements•Exteriors – exits, walkways, driveways, garages•Security

The modification can be simple – removing scatter rugs to prevent slips and falls – or complex – install-ing a stair lift or elevator to improve accessibility. The type of modification required will depend on the nature of the individual’s disabilities and the physical set-up of the home. An investment in home modification may eliminate or possibly delay the need for institutional care.

Before you begin a home modification, I suggest getting a copy of Maintaining Seniors’ Independence Through Home Adaptations: A Self-Assessment Guide (see Other Resources below), published by Canada Mortgage and Housing (CMHC). It starts with the out-side of your home, and then goes inside and through every room, asking questions that guide you in mak-ing your home safer, often with little or no cost. Below are some basic modifications which involve products that can be purchased from a hardware store or from a drug store that carries assistive devices:

• Install handrails on both sides of all steps (inside and outside)

• Secure all carpets and area rugs with double-sided tape

• Install easy to grasp shaped handles for all draw-ers and cabinet doors

• Use brighter bulbs in all settings• Install nightlights in all areas of night activity• Add reflective, non-slip tape on all non-carpeted

stairs• Install lever handles for all doors• Place a bench near entrances for setting down

purchases and resting• Install closet lights, as well as adjustable rods and

shelves

Home

Karen Henderson, founder of the Long Term Care Planning Network is an independent aging and long term care

planning specialist. Karen has worked with many families to help them make care decisions. You can reach Karen at

416.526.1090 or [email protected]

By Karen Henderson

modifications


• Install rocker light switches; consider illuminated ones in select areas

• Install grab bars, a shower or tub chair and a raised toilet seat in the bathroom

Home adaptations for people with dementiaHome modifications for people with dementia must take into account the physical changes, cognitive

deficits and behaviours associated with dementia – memory loss, wandering, pacing, stumbling, rum-maging, incontinence, sleeplessness, disorientation, confusion, agitation, fear of shadows and reflections. Safety is of paramount importance and access usual-ly has to be limited or controlled. The home modifi-cations should provide a calm, safe and comfortable home environment where a person with dementia can perform the activities of daily living to the

Before you begin a home modification, get a copy of Maintaining Seniors’ Independence Through Home Adaptations: A Self-Assessment Guide


best of his ability. The changes may also help limit anxiety and stress for both the person with dementia and the caregiver. Consult your nearest Alzheimer Society chapter for suggestions and resources.

Finding an assessor or contractorIf you are uncertain about what needs modifying, consider using the services of an occupational thera-pist, nurse or other health care worker to help with the assessment of the individual’s abilities/disabili-ties and the home environment.

If modifications involve construction of any kind, choose a contactor. The best way to find an honest, reliable contractor is to ask family/friends or oth-ers who have had home modifications done. The City of Toronto offers guidance through a web site http://www1.toronto.ca/City%20Of%20Toronto/Affordable%20Housing%20Office/Shared%20Content/pdf/A1507567_ChoosingAContractor_WebVersion_V3_accessible.pdf or by calling 416.397.4169. LC

Sources of fundingFinancing is available from many different sourc-es – governments, agencies, and disease groups. Funding can be used to modify a home (inside or outside) or a vehicle.

Healthy Homes Renovation Tax Credit www.ontario.ca/page/healthy-homes-renovation-tax-credit or 1-866-668-8297.

Ontario Seniors’ Secretariat: Home Adaptations Financial Assistance Programs http://www.seniors .gov.on.ca/en/seniorsguide/7.php. Information on several financial assistance pro-grams for Ontario.

Shoppers Home Health Care www.shoppershome-healthcare.ca/funding?regions=national. Provides a list of potential alternative funding sources who may help with purchasing assistive devices, mobility devices or home modifications.

Home and Vehicle Modification Program Administered by The March of Dimes 1-877-369-4867 for amounts and eligibility.

Government Grants and Assistance Canada Home Adaptations for Independence http://www.safespawalkintubs.com/products/rebates-and-grants.

Other resourcesMaintaining Seniors’ Independence Through Home Adaptations: A Self-Assessment Guide www.cmhc - s ch l . g c . ca/odpub/pd f/61087 .pdf?fr=1442318489140

The Safe Living Guide. http://publications.gc.ca/collections/Collection/H88-3-18-1997E-2.pdf. Available online only.

Homemods.org – ddedicated to promoting aging in place and independent living for persons of all ages and abilities.

Canadian Association of Occupational Therapists www.caot.ca or 1-800-434-2268 .

Canada Mortgage and Housing Corporation www.cmhc-schl.gc.ca/en/index.cfm or 1-800-668-2642 for housing programs and assistance.

March of Dimes Canada www.marchofdimes.ca/EN/Pages/default.aspx or 1-800-263-3463. They can provide a list of contractors and vendors.

The Alzheimer Society of Canada www.alzheimer.ca or 1- 800-616-8816

If you are uncertain about what needs modifying, consider using the services of an occupational therapist, nurse or other health care worker


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WHEN HER GRANDSON’S agenda came home from school with a note from his teacher, Bijma’s* heart ached. As though providing care and support for her ailing daughter wasn’t pain-ful enough, she was being asked to discipline her beloved grandson for acting out in the classroom.

Bijma suspected the 7-year-old was probably seeking attention at school – reacting to stress at home because his mother’s illness had been progressing toward end-of-life in recent weeks.

There is no doubt an individual like Bijma’s grand-son can get lost in the shuffle when a loved one is ill. How much more difficult must it be for a child who is expected to behave as though nothing has changed?

Compounding this problem, coaches and teachers in a child’s life are not always equipped with the skill set required to manage grief and bereavement in the team or classroom setting, which results in frustra-tion for everyone concerned.

Healing

Helen Reilly is the Communication Officer at Hospice Palliative Care Ontario.

By Helen Reilly

with heart


Heart House Hospice, located in Mississauga, recog-nizes issues such as this one in families like Bijma’s, and is exploring opportunities to address these needs. Their research showed four – five per cent of children will lose a parent before the age of 16. In 2011, there were 318,605 children and youth in the Region which means at least 12,744 children will lose a parent before they are 16.

The HUUG (Help Us Understand Grief) program, designed to support caregivers and individuals with life-limiting illness as well as children, youth and families who are coping with the dying or the death of an immediate family member, is being shared broadly, paying it forward to community partners such as schools as well as other jurisdictions so that more families will benefit from their research.

Heart House’s HUUG program received 196 refer-rals in its first year, 27 per cent of those referrals came from external sources such the Children’s Aid, with the majority of referrals coming from schools. Most referrals are for children aged 6-12, followed by youth aged 13-18 with a lesser number of refer-rals coming from those aged 0-5.

“We seek opportunities to work with community partners. We have made tremendous progress over-coming the barriers preventing members of our culturally diverse community from seeking hospice palliative care based on cultural factors. When we identified this need, we knew we could help to address childhood grief,” says Jodi Pereira, Director of Heart House’s Community Programs.

Bijma and her grandson were connected with a HUUG coach who supported them through their grief and bereavement before and after Bijma’s daughter died.

In praise of the program, a social worker from the Peel District School Board says, “What a great pro-gram,” continuing, “I have always said that Heart House Hospice has been one of the most helpful

agencies I have worked with,” and suggesting the care is “truly amazing at helping families in the most difficult of times.”

“What people may not realize and understand about hospice is that we support not only the individual, but also caregivers and family. Hospice palliative care is a philosophy of care that addresses the medi-cal, spiritual, practical and psychosocial needs of individuals and their families, so by overcoming the barriers and identifying needs in our community, we are able to offer better solutions,” says Pereira.

For more information about Heart House programs serving The Region of Peel, please visit hearthouse.ca or to identify a hospice palliative care provider in your community, call the Hospice Ontario Infoline at 416-304-1477 ext. 28. LC

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“ What people may not realize and understand about hospice is that we support not only the individual, but also caregivers and family.”

YOU DON’T HAVE to be a nutritionist to know that a diet too high in fast foods, excess sugar and red meat carries with it a risk of obesity and disease such as type 2 diabetes and heart disease.

Junk like processed or fried food, candy, pop or commercial baked goods have been stripped of any nutritional value. So even though they might relieve your hunger pangs they don’t provide the essential nutrition your body needs. They probably don’t leave you feeling very great either!

Think back to the last time you overindulged in a big meal or extra desserts. As you pushed your chair back from the table to unbutton your pants you may have experienced indigestion, a bloated stomach and felt tired or sluggish.

On the other hand, healthy foods such as fresh vegetables, fruits, nuts and whole grains contain a host of nutritious goodness: vitamins, minerals, fiber, protein and essential omega fats, just to name a few. Your body needs these nutrients in order to function. Food provides us with energy and the raw materials to carry out important bodily functions like clearing out waste, staving off illness and keeping your heart beating.

The food that you eat should always make you feel your best so you can run your own business, raise a family or care for sick or elderly loved ones – or maybe

you’re doing all three! While disease prevention is certainly an important reason to eat well, we often overlook the more immediate benefits of a healthy diet.

Here are just a few of the benefits you might enjoy:

Increased energy Processed junk and heavy, rich foods can slow down your digestion, leaving you tired and sluggish. And while caffeine and refined sugar might give you a quick blast of energy now, it will leave you with even less energy later when you crash – and you will crash.

Including protein and complex carbohydrates at each meal or snack – think baked sweet potatoes with roasted chicken and a salad – will give you a

Amanda Laird is a Toronto-based holistic nutritionist, writer and speaker who believes that

delicious food and healthy food aren’t separate concepts. Visit her website at www.amandalaird.

ca and send your nutrition questions to [email protected].

By Amanda Laird

Nutrition matters

Healthy whole foods:•Leafy greens •Colourful vegetables •Fresh fruits •Lean protein •Fish•Nuts and seeds •Beans and lentils



sustained source of energy that will last much lon-ger, without the ups and downs.

Better digestion Heartburn, constipation, gas and bloating are all unpleasant symptoms related to eating too much of the wrong types of food. Meals and snacks should leave you feeling satisfied, not overstuffed or sick to your stomach.

In addition to choosing whole foods, slowing down to eat at a table from a real plate and chewing each bite can also help alleviate digestive upset. It might also help you eat less too!

Improved sleep and mood That sugar or caffeine high I mentioned earlier isn’t just going to mess with your energy, it can also inter-rupt your sleep and leave you feeling grumpy.

You’re not going to get a good night’s rest if your body is trying to digest a day’s worth of junk food or you’re still riding a sugar rush. Then if you haven’t had enough sleep you’re certainly not going to be a ray of sunshine. It’s a vicious cycle – when you’re feeling sluggish you may be more inclined to reach for sugar or empty carbs.

Try to drink your first cup of coffee only after you’ve eaten a healthy breakfast and certainly don’t drink caffeinated beverages after 2:00 pm. If you’re going to have dessert it’s better to have it at lunch rather than dinner so you’re not heading to bed with ele-vated blood sugar.

Life is busy and you can’t afford to be weighed down by poor food choices. Eating a healthy, whole foods diet will help you feel great today while preventing disease tomorrow! LC

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The food that you eat does more than just relieve hunger


The home offers a familiar environment that can help a person with dementia stay connected with the past and maintain their sense of identity. But as the dis-ease progresses and the person’s abilities change, you may have to make some practical adjustments to ensure your home is as dementia-friendly as possible.

is your home?

Howdementia-friendly

Understand and recognize changing abilitiesThe first step to ensure your home is safe and dementia friendly is to understand and recognize changes in the person’s abilities. Dementia affects each person differently and is progressive, so be on the lookout for changes over time. Some of these changes may include: decreased balance and reac-tion time, visual and perceptual problems, physi-

cal limitations and mobility issues, and declining memory and judgment.

Strike a balance that promotes the person’s current abilitiesMaking your home dementia-friendly also requires striking a balance between safety and independence. Too many restrictions can make it hard for the per-son to take part in daily activities that they enjoy.


Providing care to a family member with dementia can be exhausting and stressful. It can also affect your ability to anticipate risks or harm that may occur.

The following home-safety checklist will help keep you on track:

• Should throw rugs be put away and the carpet secured to prevent slips and falls?

• Are the stairways safe?

• Can the person in your care safely use electric appliances in the kitchen and bathroom?

• Are there medications, cleaning and gar-dening products that should be securely stored?

• Should the temperature of the hot-water heater be lowered?

• Are there any items such as mirrors, pictures and wall hangings that can confuse the person with dementia?

• If the person with dementia smokes, do they need supervision or should the lighter and matches be taken away?

• Should some doors be locked or should the position of the lock be changed?

• Should safety equipment such as grab bars, elevated toilet seats or non-slip mats be installed in the bathroom?

• Does the lighting in your home eliminate shadows that may cause confusion?

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They can also erode the person’s self-confidence and self-esteem.

A good strategy is to try and adapt activities or tasks that reflect and promote the person’s current abilities. For example, if the person enjoys wood-working but can no longer operate power tools, you might encourage them to sand and paint instead. Tailoring activities in this way is a continuous pro-cess as the disease progresses.

Be thoroughSome areas of a home may be more hazardous than others. Pay careful attention to the garage, base-ment and outdoor areas. Focus on prevention – look around for any potential hazards such as carpets that may cause a fall, poisons that are easily acces-sible, a gas-fire stove top, small objects that could choke and doors that could lock accidentally and trap someone inside.

To learn more about home safety or to connect with your local Alzheimer Society for help and support, visit www.alzheimer.ca LC

Caregiver Tips


Introducing Home & Long Term Care’s columnist Barbara Grant. The Keep Moving column will provide readers with information on fitness and healthy living.

Keep Moving:


Tel: 416.483.0070 Toll Free: 1.855.483.2273 www.LAServices.ca

Celebrating 16 years of service

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• Escorting to appointments; shopping

• Referral for solutions for mobility needs

• RN/RPN supervised care

• Convalescence and respite

• Veteran’s care

• Physiotherapy & occupational therapy

• Nutritional planning; meal preparation

• Chronic disease care: cancer, Alzheimer’s, Parkinson’s, etc.

• Direct CCAC referrals

• Hospital and retirement home care

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IF WE DON’T make time in our life for fitness and health now, we are going to have to make time in our life for ill health later. Even for those who suffer from chronic conditions or are in rehab or long-term care, maximizing physical fitness to whatever degree or capacity can have a pro-found impact on quality of life and mental and emotional health.

It doesn’t matter what kind of exercise we do. What matters is that we do it regularly. Ideally, our goal should be 30 minutes of physical activity a day. As we age, our needs and abilities change. During our lifetime, we may encounter injury or illness. For these reasons, our activity program needs to change too. And remember, there are lots of ways to stay active that don’t include formal exercise.

priorities for every ageExercise

Barbara Grant is the Founder and Director of Retrofit Pilates in Toronto. She can be seen weekly on Rogers television as

the host of Shape Up with Barbara Grant. http://www.retrofit.ca/barbs-blog

By Barbara Grant

Continued on page 20


Our kids are watching us so it’s important to model healthy, active behaviors.

Under 40In terms of health and fitness, the years leading up to our forties are really about laying the foundation for physical, emotional and mental health. Along with good eating habits, we need to be developing strength, flexibility, and cardio-vascular health, as well as increasing muscle mass and finding ways to positively impact our mental health. Sexual health is also paramount and pre and post partum health will often become important in these years.

Though many of us don’t realize this in our younger years, our bodies are at their most resilient when we are young. It’s during these times in our lives that

our bodies can handle a lot of abuse. This is also the time to develop healthy habits that will last a lifetime. Try lots of activities and choose something that makes you break a sweat and feel good about yourself. And learn to cook!

Ages 40-65No matter how healthy we have been in our youth, we start to see problems by the time we are in our fourties: back and joint pain; weight gain; high blood pressure and cardiac events; diabetes and disease. This is also a time when we have maximum demands on our time which means less time for exercise and self-care. The effects of a sedentary



lifestyle start to appear. The issues that appear as nagging problems now will grow to become crises if we don’t attend to them.

We need to focus on staying or getting active. It’s important to maintain muscle and bone mass, pel-vic floor health and postural endurance. We need to do body-weight training like Pilates and yoga or weight training to build joint stability particularly in the lower back, shoulders and knees. We also need to increase mobility and flexibility. With time at a minimum and pressures at a maximum, we need to learn to manage stress – mindfulness, meditation, and breathing exercises are all great strategies. Our kids are watching us so it’s important to model healthy, active behaviors.

Ages 65-75If you have made health a priority in your forties, fifties and early sixties, you are going to be well set up for your “golden years” when we will likely start to see increased physical breakdown such as spinal issues, arthritis, osteoporosis and joint degeneration. Maintaining a healthy weight and continuing to do strength and flexibility training will help mitigate some of the decline. During these years, we may have to modify our exercise program or take a gen-tler approach. Continue to work on strength, endur-ance, flexibility and cardio health. And pay attention to your feet! They need exercise too.

Ages 75+The goal of exercise in our older years is functional fitness to maintain activities of daily living. Balance training and fall prevention are vital. Stimulating the brain with movement helps maintain cognitive

function. The social interplay and tactile interaction in exercise improves mental health and encourages physical independence. There are many excellent programs designed for older adults such as Chair Yoga, specialized swim programs and Balance and Agility Pilates classes where exercises are modified for mobility issues.

How to helpEncourage your loved ones to stay as active as pos-sible. Walk with them wherever you can whenever you can. Invite them to do chores – everyday activi-ties like house cleaning, cooking and gardening will help increase their fitness level. Encourage them to be as independent as possible for as long as possible.

Caring for an aging, infirm or injured loved one is challenging. But caregivers also need to somehow find time to prioritize their own health needs. The pressure to exercise and keep fit can seem like just one more thing you don’t have time to do. It’s impor-tant to include exercise and movement in all aspects of our life instead of thinking about it as something separate we do in a class or at the gym. And its something you can do together! LC


A HAND CARVED WOODEN CANE leans casu-ally in the corner of Suzanne Retter’s homey and comfortable two bedroom apartment in Oshawa. On the table, there’s a well-used, sturdy-looking camera keeping an observant yet patient eye on the dining room… Though Suzanne’s good friend Bert is nowhere to be found – having passed away in February of 2016 – the energy of his presence is palpable. “He just had this magnetic personality,” says Suzanne wistfully. “People just gravitated towards him.”

It was that magnetism that helped Bert and Suzanne bond instantly six years ago when they met online in a “seeking friendship” listing. Both had a shared love of photography and enjoyed taking road trips north to explore Ontario’s rugged, vast and tranquil landscapes. There’s a certain glimmer in Suzanne’s eye when she talks about these trips and remem-bers Bert’s pure joy of witnessing snow or the rocky Canadian Shield for the first time. “He was like a child discovering something,” she says, reflecting on how in-the-moment Bert – a life-long traveler origi-nally from Tobago – lived.

But his adventurous life suddenly took a tragic turn on his 63rd birthday when Bert received heartbreak-ing news: he had Stage 4 cancer. While he came to terms with the diagnosis and determined how to spend what little time he had left, one thing was clear: he didn’t want to be cooped up in a sterile hospital room. The beds were too small for his com-manding stature, the environment too stifled for his

easygoing personality. But as a retail sales associate, money was tight. Bert also had no family in Canada to support him and it became apparent that he was going to need round-the-clock care as his condition worsened. Though devastated by the news, Suzanne didn’t hesitate – she offered Bert a room in her home and put her career as a real estate agent on hold to care for her dear friend. He died just three and a half months later. “In his last days he felt safe, he felt com-forted and loved. I made sure of that,” says Suzanne.

Friends

Pamela Stoikopoulos is Sr. Communications and PR Manager at VHA Home HealthCare.

By Pamela Stoikopoulosfor life


While Suzanne is modest about her caregiving role, Jill Lindo, Bert’s home care nurse, felt differently; “Suzanne is truly an amazing woman,” she says. Jill was so impressed by Suzanne’s commitment to sup-porting Bert that she nominated Suzanne for VHA Home HealthCare’s Heart of Home Care Award – an honour which celebrates unpaid Ontario caregivers who go above and beyond to care for a loved one. In May 2016, she won the award and enjoyed an after-noon off in downtown Toronto taking in a lunch

with other caregivers and a special performance by R & B singer Jully Black.

While Suzanne was flattered by the win she was also surprised that her care for Bert seemed special to others. “You take care of people that you love,” says Suzanne matter-of-factly. “It’s the human thing to do…It was an honour and a privilege.” You can visit Suzanne and Bert’s video story online at http://bit.ly/HeartSuzanne

Bert – a life-long traveler – was originally from

Tobago.

Continued on page 25


MY NAME: Rosa GiulianiMY JOB: Care Coordinator

What I do: I visit clients at home and meet with the other people who are important to them: their caregivers, families, doctor and others. I see what supports my clients need to continue living safely at home, and I listen to what’s most important to them. Then I develop a plan that is truly tailored to the clients, and may include the services of nurses, personal support workers, occupational therapists, physio-therapists and homecare pharmacists. I phone and visit with my clients regularly, adjusting their care plans and services as their needs and goals change.

In Ontario, care coordinators work for Community Care Access Centres (CCACs). We are all registered healthcare professionals, like nurses, occupational therapists, physiotherapists or social workers; I’m a registered nurse.

Some of my care coordinator colleagues work in hospitals, helping people return home with the supports they need.

What I like best about my job:I like results, and finding solutions for my clients is really satisfying. I can see what a difference it makes in their lives. I reach out to other profession-als when I need to, so my clients can benefit from their expertise.

I find providing client-centred care really reward-ing. I try to make sure my clients know it’s all about them, their goals and their values. My role is to see how I can make the healthcare system work for people, involving community partners along the way.

To me, improving healthcare means working with professionals in other healthcare organizations to find solutions and being innovative and always keeping the client in mind. LC

Rosa Giuliani works with Toronto Central Community Care Access Centre. She was recently nominated for a 2016

Toronto Star Nightingale Award for her outstanding work.

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Above: Rosa Giuliani

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Suzanne Retter (right) with VHA nurse Jill Lindo (left) at caregiver luncheon where Suzanne was honoured for caring for her friend Bert.

Suzanne’s Caregiving Tips:• Take advantage of any help you are offered. • Don’t be afraid to ask questions. If you don’t

understand what the doctors, nurses, social work-ers, occupational therapists, etc. are telling you, ask clarifying questions until you get it.

• Try to attend all appointments with your loved one if possible and be sure to take notes. There is a lot going on and much to retain so writing things down will ensure you don’t forget impor-tant details.

• Be patient with your loved one. It’s a challeng-ing time for everyone involved. If you’re feeling frustrated, exhausted, cranky (and you probably will at times) take a deep breath and remember the big picture and how important your role is within it.

• Be your loved one’s advocate. Ask your loved one what they want and do your best to make it happen

For more caregiver tips and information visit www.familycaregiving.ca LC



CARING FOR OUR ELDER loved ones has changed over the years. Children living great distances from their parents and women hav-ing careers and full-time jobs are both factors that have resulted in less multi-generational families living under one roof, and more fami-lies ‘fitting in’ caregiving among many other

responsibilities or even, caring from great dis-tances. Many are finding themselves part of the ‘sandwich generation’, caring for both parents and young children at the same time. With our aging population, becoming a caregiver may be more necessity than choice for many families. Being a caregiver can be overwhelming; impacting rela-

Esther Goldstein, B.Sc., B.S.W., RSW is a former acute care hospital social worker and the author of the “Comprehensive

Guide to Retirement Living®” now in its 19th edition. For further information on this and other topics related to seniors’

care visit www.senioropolis.com .

By Esther Goldstein

Who cares for the

By Esther Goldstein

caregiver?

Many are finding themselves part

of the ‘sandwich generation’,

caring for both parents and young children

at the same time.


tionships, jobs, emotional and physical well-being. The best way to lessen or even avoid some of these issues is for the caregiver to ‘care’ for themselves. But the question is, how do you do this when you are juggling responsibilities and being pulled in many directions?

There are several things caregivers can do to cope better with this often unexpected and daunting role:

Communicate: Speak to medical personnel about concerns, issues, diagnosis and prognosis. Create a support network including family, friends and oth-ers who you can easily talk with about your feelings and needs. Bear in mind that avoiding or negating problems does not make them go away; it only com-pounds them.

Educate yourself: Knowledge can only empower you; know the facts. Ask questions of medical personnel and anyone working with your loved one so you can fully under-stand the situation, their medical condition and the options available to you. If you are providing physi-cal care, ensure you learn how to do this safely.

Ask for help: Sharing responsibilities is difficult for some though accepting help from others is important for both the caregiver and the person receiving care. Learn to delegate tasks to family and friends who are willing to assist. And, don’t be afraid to hire help if you need to. Good care can be provided by others besides the immediate family and it is important to recognize this and utilize it if necessary. Keep in mind that peo-ple don’t know what you need unless you ask for it.

Stress management: It really is okay to feel overwhelmed, sad, anxious and a host of other emotions. Acknowledge and recognize your feelings – don’t try to hide or negate them. Explore and understand the things that trigger a stress reaction in you and what that ‘looks like’ for you. Learn the signs of ‘caregiver burnout’ and speak to your doctor or a mental health professional if you are concerned or if your physical health or function-ing is impacted.

Life balance: You need to ‘care’ for yourself in order to be an effec-tive caregiver for someone else. Eat properly, exer-cise, sleep and take breaks. It’s okay to do things for yourself. Build in ‘me’ time into your week. You can say ‘no’ if you simply aren’t up to doing something. Caregiving is a learning process so allow yourself to make mistakes. Know your limits and deal with your stress before crisis hits. Don’t ignore your own health issues. Talking to others who understand your situation, can be very helpful; consider joining a support group either in person or online for those in similar situations.

Even though being a caregiver can be stressful, it can also be extremely rewarding. How it impacts us has everything to do with our ability to deal with the ups and downs of daily life and our attitude. Finding the ‘silver lining’; having realistic goals, sharing respon-sibilities, cherishing special moments and finding enjoyment in simple pleasures can contribute posi-tively to how we cope and manage what can be one of the more challenging roles in our lives. LC

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CHRONIC DISEASES ARE widely prevalent today with a substantial proportion of Canadians living with one or more chronic health condi-tions. Chronic diseases such as diabetes, arthritis, cardiovascular disease, and asthma can signifi-cantly impair an individual’s ability to carry out daily activities, affecting their quality of life. Not only do these conditions impact the lives of those living with them, but they also affect their loved

ones who may need to fill a new and unfamiliar role acting as their caregivers. Although these conditions generally cannot be cured, some good news is that they can be managed through proper education and support. Individuals living with chronic conditions can learn to take control of their health and alter the progression of their diseases. Beyond this, their caregivers can also learn how they can play a role in supporting and caring for their loved ones.

of chronic diseasesSelf-management

Alyssa Hurtubise is Regional Program Coordinator, Living Healthy Champlain, Bruyère Continuing Care.

By Alyssa Hurtubise


Those living with chronic conditions benefit from an active engagement in their healthcare. By develop-ing the skills and confidence to better manage the physical and emotional effects of their condition, individuals living with chronic conditions can start to feel better and use healthcare services more efficiently. Referred to as self-management, the abil-ity of an individual to manage the symptoms and treatments associated with their condition allows individuals to become an active participant in their own care. By increasing the awareness of caregivers about self-management as a strategy to approach chronic illness, we can make sure everyone involved is well-equipped to support and promote the impor-tance of self-care in the management of chronic conditions.

There is help available!The Ontario Ministry of Health and Long-Term Care (MOHLTC) provides funding for self-management workshops available to Ontarians with chronic con-ditions. Free to participants, these workshops aim to empower individuals to more effectively deal with their disease and maintain a higher quality of life. Participants of the workshops learn to manage their own health and the symptoms associated with their condition as well as how to communicate effec-tively with their healthcare team. Free in-person and online workshops are available across Ontario that can help those in need build the knowledge and skill sets required to manage their own health and chronic conditions. Caregivers, friends and family members of loved ones experiencing chronic conditions are also welcome to participate in these workshops and may benefit from learning about the role of self-management as a strategy for individuals with chronic illnesses.

Developed at Stanford University, the self-manage-ment programs empower individuals living with

chronic health conditions to build skills and confi-dence to help them cope with their disease and live a healthier life.

“I can do things and it’s up to me to do it. It’s up to me to go find help if I need it.” – Workshop partici-pant testimonial.

Research has shown these programs lead to improved health status and self-efficacy of participants, as well as fewer visits to physicians and days spent in the hospital.

To find out more about the Online Chronic Disease Self-Management Program, visit www.ontarioself-management.ca. To learn about the regional in-person workshops offered across Ontario, click the ‘regional programs’ tab and enter your postal code to find the services available in your area. LC

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“I can do things and it’s up to me to do it. It’s up to me to go find help if I need it.”

30 Home & LongTerm CARE | July 201630 Home & LongTerm CARE | July 2016

Caregiver SOS

My widowed mom believes in the adage that you must “take a parent into your home as they age.” My family is not sure what to do.

– Signed, In or out?

THIS DECISION IS very complicated and specific to each family and situation. I do know it is critical that you consider all the issues involved and how they may impact on all of your lives.

A healthy relative can share in the household tasks as well as assisting with child rearing. Some families arrange a financial agreement with a parent that can offset some additional incurred costs. Consider what type of relationship you all have had with the parent in the past. Yes, this may be an opportunity to start over; but if you have never gotten along, don’t expect things to magically fall into place. Even if it

feels like the “right move” you may end up feeling unhappy and not doing the right thing for your parent.

Her care needs are a key con-sideration. This includes issues like the physical setup of your house. Accessibility, privacy and the potential need for other supports must be considered.

Not everyone can, or wishes to, renovate.

You need to have a frank discussion with siblings about this, and determine if they support you. This can especially occur if mom is contributing finan-cially to your family.

The key players, your partner and/or children, must be on board; which means having an honest discus-sion with them about some changes that may occur.

By Nira Rittenberg

Nira Rittenberg

ParentsMust you take a parent in?

July 2016 | Home & LongTerm CARE 31July 2016 | Home & LongTerm CARE 31

Yes, your home can theoretically become a lovely intergenerational family, but if your spouse or your children don’t connect with your parent, this may be a challenging situation. The adjustments may affect use of space, food choices, music, and social options for you all. On the flip side, taking in a parent may also be a positive experience. They bring stories, new perspectives, valuable teaching opportunities and relationship building.

The reason you likely are considering this is because your mom needs more care. The logistics and the potential toll are not always obvious if you have never helped care for an aging adult.

An important question to ask yourself first: Are you aware of mom’s full medical status and prognosis? Even a parent who is currently independent may start to need care and supervision as time goes on. This may include medical appointments and coordi-

nation of care. Siblings can pitch in, but ultimately you are likely the primary co-ordinator. If mom has mental health or cognitive issues, your house may need to adapt in terms of routine and care. Job flex-ibility (working from home) can be of help, but care-givers often report a sense of strain and difficulty if they don’t have supportive employers. Check your work flexibility option out prior to the move.

Your relatives may be more isolated from their social networks in your home. Map out how much time you are all actually around. Lifelong friends and neighbours may not be available, especially if distance is involved. Community programs can fill the gap and the stimulation of your home may offer alternate enjoyment.

A live-in grandparent can enrich a family’s life, but think it through. And most importantly – be honest with all the players! LC

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health

Sciences Centre and in private practice. This article originally appeared in the Toronto Star. Email questions to

[email protected].


MARTHADIDN’T HAVE TO GO TO THE HOSPITAL TODAY.

geriatrics.otn.ca ontariotelehomecare.ca

With Telehomecare and other virtual healthcare programs, like

the Ontario Geriatrics Learning Centre, the Ontario Telemedicine

Network supports home and community care. OTN is a non-

profi t organization supported by the Ontario Ministry of Health

and Long-Term Care and Canada Health Infoway.

home & longterm care 2016 july edition

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