Home & LongTerm Care

See page 8

CareCaregiver SOS

Alzheimer’sFinding your right

place of careCaregivers and mental health

March 2016 www.homeandlongtermcare.ca

Starting the

It’s never too early or too late

Starting the

2 Home & LongTerm CARE | March 2016

Because YOUCARE

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Cover story: Start the senior care conversation

4 Editor’s Note

14 Technology: A support to seniors and caregivers

16 Families living with dementia

20 Preparing your home for a loved one’s return from hospital

22 Caregivers prone to winter blues

23 Caregiver SOS

26 From hospital to home care

30 Are you at risk for caregiver burnout?

3:49

contentsMarch 2016

18 24 28

10

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Caregivers and mental health

Aging parents: Home care?

Alzheimer’s & Dementia

Your right place of care

When your loved one refuses help

Defining thehelp you need


WELCOME to the inaugural issue of Home & Long Term Care – a new monthly magazine brought to you by the Publishers of Hospital News.

Hospital News has been a trusted news source for health care professionals across Canada for 29 years – it is our goal to estab-lish Home & Long Term Care as the trusted resource for family caregivers and their loved ones. Whether you are providing care to spouses, children, parents or other extended family members in need of support due to age, debilitating medical conditions, chronic injury, long term illness or disability; we are here to help.

Every month we will provide you with practical tips and informa-tion on caregiving – for both your loved one and yourself. If there is a certain question you want answered or a topic you want more information on, please don’t hesitate to send me an email. I will respond and use all the resources and experts at my disposal to get you the answer or information you need.

We look forward to helping you on your caregiving journey.

Kristie JonesEditorHome & 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.

Home and Long Term Care and Members of the Advisory Board assume no responsibility or liability for claims, statements, opinions or views, written or reported by its contributing writers, including product or service informa-tion that is advertised.

Changes of address, notices, subscrip-tion orders and undeliverable address notifications, and inquiries can be sent to: [email protected]

Subscription rates in Canada for single copies is $35.00 per year.

Canadian Publications mail sales prod-uct agreement number 40065412.

From the publishers of Hospital News, reporting on health care news and best practices for over 25 years.

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PUBLISHERSTEFAN DREESEN

CREATIVE DIRECTORLAUREN REID-SACHS

SENIOR GRAPHIC DESIGNERJOHANNAH LORENZO

GRAPHIC DESIGNERSANGEL EVANGELISTA, CAROLINE PAPINEAU

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KATHLEEN WALKER, STEPHANIE GIAMMARCO

BILLING AND RECEIVABLESMATTHEW PICCOTTI,

PHIL GIAMMARCO

March 2016 | Home & LongTerm CARE 5

I HAVE HEARD professionals say over and over: “Why don’t caregivers ask for help? Why do they tell us in surveys what they need, and then ignore the services that we develop?” I believe the answer is this: Being a caregiver is like walk-ing a tightrope. As long as you hold on to your pole – your pride, maybe your stubbornness – and maintain your concentration, you may

wobble but you will keep your balance and remain upright, physically and emotionally. You don’t feel you need help. But as soon as something begins to shift and your pole becomes unbalanced, you start to lose control, you lose your balance and you fall. You still don’t ask for help because now you think it’s too late to fix the impossible.

Defining

Karen Henderson is an Independent Aging and Long Term Care Planning Specialist and Founder - The Long Term Care

Planning Network. She can be reached at [email protected]

By Karen Henderson

Continued on page 6

the help you need


It’s unfortunate that we don’t like to ask for help – most of us have been raised to believe we should be self-sufficient. But there comes a time when asking for help is the smart thing to do, especially if you are a caregiver.

It’s about survival.

You may say: I am so tired I don’t know what I need. Here’s how to define the help you need.

1. Create an unemotional list of all the tasks that need to be done

2. Take this master list and group the tasks into categories – personal care, household chores, transportation, advocacy etc.

3. Review the list objectively and honestly; decide which things you enjoy or are able to do, and which things you really dislike doing.

4. Now when people ask: How can I help?, you have a list ready to go.

When people offer their help, consider their abili-ties or interests. If a friend loves to cook, ask for help with meal preparation.

People really do want to help, but when they ask, they need direction. Whether it’s bringing over a casserole, spending time with dad or researching something you want to know more about, tell them what you need; they will support you.

If a friend or relative turns you down, don’t take it personally. Simply say, “Why don’t you think about it?” and try asking again at a later time. We all lead busy lives, and the timing may just not have been right.

Remember the old adage: Ask and you shall receive. But you have to ask first!

There is no shame in asking for help; in fact, as I have become older I admire the courage of my friends who have asked me for help. I am there for them and know they will be there for me. LC

Continued from page 5


THERE ARE DYNAMICS within every family that can make your role as a family caregiver challenging.

How do you help someone who needs it, espe-cially if that person needs more care and support but may be reluctant (or refuse) to accept it?

Elizz Caregiving offers the following tips for family caregivers on helping someone who refuses help:•Plant the seed. You may need to revisit a topic

more than once, and in different ways. Your sug-gestions may not be taken now, but leave the door open for later.•Ask the person to tell you more about his or her feelings about receiving help. Use open questions that require a sentence or more to answer and try to avoid closed questions that only result in a yes or no answer.• Provide written information on the resources or

services you want to help with, and let them read it over at their leisure.

What to do when yourloved one doesn’t want help

Continued on page 12

Caregiver Tips

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It’s never too early – or too late – to talk to parents about their changing needs

RARELY DO I MEET people who want to talk about planning for a loved one’s aging future. Rather, I meet them when they are in crisis, when they are already under tremendous stress to make decisions too quickly, with too little information.

I know... I was one of those adult daughters who thought my father would go on forever function-ing independently. How wrong I was and how we both suffered as a result of my denial. This denial can lead to countless problems, stresses and ultimately to caregiver illness or depression.

Somebody – either the adult child or parent – has to start the conversation about a parent’s plans for the future. Otherwise a crisis will do it for you.

Caregiving can start gradually or it can start sudden-ly with a desperate phone call in the night. However it starts, in all probability you won’t be ready.

So... how can you begin to prepare?

1. Expect and accept that your parents will grow old. Aging is not a disease; it is part of the life cycle. But remember the 40/70 Rule: When adult children are about 40, and parents about 70 years, it’s time to start talking.

2. Ask parents what they want as they age. If they want to stay in their own home, should they be looking at home renovations to make it easier to go up/down stairs or use the bathroom if a wheelchair is or may be required?

3. Understand the critical role of legal and financial planning. Start to gather information about your parents’ financial security; learn where original doc-uments are stored. Ensure your parents have pre-pared necessary documents such as Wills, Advance Directives and Powers of Attorney. Be prepared for some emotional encounters but don’t give up.

“ If you don’t want to talk about this, or if you can’t, maybe you could just pray for a tornado to hit your parents the day before they get sick.”

Shlomo F. Kreitzer, a retired psychologist.

Start theconversation

By Karen Henderson


Caregiving can start gradually or it can start suddenly with a desperate phone call in the night. However it starts, in all probability you won’t be ready.

Karen Henderson is an Independent Aging and Long Term Care Planning Specialist and Founder - The Long Term Care

Planning Network. She can be reached at [email protected]

4. If you have siblings, talk about how you plan to divide responsibility for your parents’ well-being. Another way to start the conversation is to call a family meeting. This way everyone – parents and adult children – will understand the challenges; all will have a chance to par-ticipate in the solutions. If a sibling is out of town, try to set up a teleconference. The only reason a parent should be excluded from such a meeting is if he is too mentally impaired to understand or contribute and would impair any progress.

5. If a parent suffers from a particular disease – heart or stroke, arthritis, diabetes, demen-tia – learn all you can now about the disease and what a caregiver can expect as the disease progresses.

6. Learn about the health care system in your par-ents’ province; understand what alternate accom-modations exist, how home care operates, what social services are available. Understand what the government does/does not pay for.

7. Talk to your peers about how they are facing their caregiving challenges, the problems they have encountered and solutions they have found.

9. Talk to your employer about your EAP program or other benefits that may assist family caregivers.

10. Finally, take an objective look at yourself. Are you prepared to be a caregiver? How will you accomplish this, along side your other roles as a business professional, parent, spouse?

Some don’ts• Don’t make promises you may not be able to keep

i.e. ‘You can always live with us’ or ‘I’ll never put you in a home.’

• Don’t concentrate on what your parents can’t do; focus on maximizing what they can do.

Some do’s• Become educated and aware.• Understand and accept your feelings.• Talk with others in your situation.• Empower your parents.• Involve your parents.

Think ahead and prepare yourself and your parents for what will happen, so when it’s all over you can honestly say: “I did the best that I could.”

Open communication with your parents is the most powerful tool you have to help ensure you and your parents age gracefully together. It’s never too early – or too late – to begin this critical conversation. LC


AS AN INDIVIDUAL requires more care due to aging and illness, many find themselves consid-ering long-term care. Family members may bring it up. Doctors may even recommend consider-ing it. Often discussing the possibility brings up strong emotions. But the good news is that there are more than just two choices, home or long-term care.

There are a wide range of services available, includ-ing home care services available from public and private agencies, volunteers and professionals from community service organizations, assisted living and short-term respite care to give caregivers a break. Because healthcare is a provincial responsibility, options will vary from province to province. These are the main options available in Ontario. With this range of services, individuals can get the care they need while maintaining what’s most important to them.

This suite of care options can evolve as an indi-vidual’s needs progress – and as the abilities of a caregiver change also.

Community ServicesThere are many community services that may be help-ful in place of, or in addition to, health care supports at home. These services can contribute to enhanced independence, enjoyment and relaxation as well as much-needed caregiver support. These services can help reduce the stresses of daily living for both the individual and the caregiver and may include:

• Meal delivery and dining programs• Transportation services• Friendly visits

Fees may be charged for some services, such as meal delivery, but they are often reduced.

Publicly-funded Home Care If you require health care or personal support in your home or community, many provinces pro-vide some amount of publicly-funded home care. In Ontario, this is done through the Community Care Access Centres (CCACs). Through personal visits and regular check-ins, they determine the right care and health supports for people and their families.

CCACs have built strong relationships with trusted service provider partners and have a rigorous pro-cess to select the most qualified health care provid-ers to care for clients in their community. Services may include:

• Care Coordination• Nursing• Personal support, such as bathing and getting

dressed• Physiotherapy, occupational therapy, nutritional

counseling and speech-language therapy• Social work• Medical supplies and equipment

Private home care agencies These can provide nurses, personal support work-ers and housekeeping services for short and longer term. These services must be paid for by the client or family members. Usually you are not required to ‘qualify’ or demonstrate a particular level of need.

Residential livingThere are different types of residential living avail-able to people who need some assistance, but don’t have needs that are high enough to qualify for long term care. In Ontario, three distinctions are Assisted Living, Supportive Housing and Retirement Homes.

Kathy Lashley is Manager, Placement Services, Toronto Central Community Care Access Centre (TC CCAC).

right place of careBy Kathy Lashley

Finding your


These are sometimes confused, but serve different functions.

Assisted Living – Some seniors may require more daily care than home care can provide, yet do not need the medical monitoring or supervision of a long-term care home. Assisted living programs may be the right option. Services vary according to need, and can include personal care, homemaking and an emergency response system.

Assisted living programs may be offered in a variety of settings, including seniors’ apartments and social housing buildings.

Supportive Housing – Supportive housing provides seniors and adults with physical or cognitive dis-abilities, mental health issues or HIV/AIDS with support and accommodation in specially-designed buildings, or apartments. Living arrangements may include shared houses or apartments and self-con-tained apartments. Through the Ministry of Health and Long-Term Care, personal support is provided on-site, 24-hours-a-day.

Supportive housing buildings are owned and oper-ated by not-for-profit corporations. In most cases, the rent charged is based on ability to pay, or the market level rent is subsidized through the Ministry of Housing.

For Assisted Living and Supportive Housing, indi-viduals must be assessed and hold a provincial health card.

Retirement Homes – Retirement homes are privately owned and operated facilities that provide supportive services to residents that vary with the home, but may include house-keeping, meals, and laundry services. Some retirement homes also provide assistance with bathing, dressing, medications, general support, nursing, wound care, supervision and other services.

Retirement homes are regulated and licensed, but do not receive funding from the govern-ment. You can apply directly to a retirement home for admission, but you should discuss

your specific needs with one or more homes before making a decision.

Respite care When an individual has significant needs, but is able to stay at home because a family caregiver (such as a spouse or child), short term care is available when that caregiver needs a break. Often it means an individual will stay in a long-term care residence for a few weeks or up to 60 days. Besides giving the caregiver a much-needed break, this also can be an opportunity to introduce potential clients to long-term care. As with all residential care, a fee is charged for respite care.

For more information about any of these options, contact HealthcareAtHome.ca or 310-CCAC. Information about community services can be found at Healthline.ca. LC


• Give several options for the care situation.• Talk about resources or care options with a “let’s

try it” approach, with no pressure.• Avoid phrases that tend to shut down conversa-

tions like, “Don’t worry about that,” “you’re not listening to me,” or “you don’t know - you may like it.”

• Share your own fears and emotions if the person seems reluctant to tell you what he or she is feel-ing. You may help break the ice.

• Listen more. Talk less.• Offer to have a professional or expert talk with

the family – an unbiased outsider who can give recommendations.

• Don’t ask the person to make immediate decisions.• Help the person focus on what he or she is still

able to do independently.

Ultimately, as a family caregiver, you need to respect the person’s wishes and their right to live with their own choices. Try to help create a safe care plan that

respects these wishes, even if you are not as comfort-able with them.

Strategies for creating a safe care plan for helping someone who refuses help:• Leave a set of house keys with trusted neighbours.• Arrange for someone to call or visit the person in

your care once a day.• Kitchen safety: Use an automatic shut off kettle

or toaster oven, remove fuses for the stove, put burners on a timer, shut off gas, and lower the hot water temperature. See our Elizz article on home safety tips.

• Have an emergency call system in place.• Get external help with tasks such as housekeeping

and meals (e.g., home support services, Meals on Wheels, microwaveable prepared dishes, etc.)

• Remove all unnecessary clothes, shoes and coats.• Medication safety: Use blister packs, and have

someone call to remind the person about taking their medication(s). LC

Adapted from the Alzheimer’s Society brochure on Tough Issues Living Alone. Kate Grainger is a communications

associate at Saint Elizabeth Healthcare. This article is printed with permission from elizz.com.

Continued from page 7

Caregiver Tips


AFTER A FALL that led to hospitalization 14 years ago, GTA resident Ruth was faced with a number of difficult decisions. First and foremost, what could be done to ensure she felt safe in her home but also allowed her to maintain a very active lifestyle?

Canada’s aging population has shifted the con-versations we’re having about technology and successful, independent aging. At a time where technology seems to be moving so quickly and with a population that now has more seniors than children, it adds just one more element to navigating the aging process.

Ruth wanted to keep her freedom, and continue living an active life without making compromises fueled by fear. It was also important to her that her son, Mark, could continue to live his life. As much as she didn’t want to worry herself, she didn’t want him to worry either. Ruth began using GoSafe – a wearable, light-weight pendant that provides support for true independence. Now at 79, you could say that Ruth’s life hasn’t skipped a beat.

Seniors today have a different outlook on their silver years. They are looking for freedom, independence and the opportunity to stay active and connected to the world around them. According to a Government of Canada report, a large majority of seniors are

active later in life: 80 per cent of seniors participate frequently (at least monthly) in at least one social activity, 36 per cent perform volunteer work and 13 per cent participate in the work force. To compound these changes, 90 per cent of seniors in Canada are living in private homes – a historical shift from yesteryear.

Knowing that not everyone experiences a seamless transition with new technologies and the vari-ous ways it can improve daily life, the health care


A support for both seniors & care providers

Technology


industry needs to respond with the right supports for these dynamic years. There is also onus on those caring for someone senior to consider their health, wellness and comfort—in particular, aging-in-place which appears to be a top priority for most.

The following tips are a great and empowering way to start the dialogue around a successful aging strategy:

1. Have an open and frank conversation about everyone’s definition of successful aging. You may be surprised to hear that caregivers and care-receivers have different perspectives on what a fulfilled senior life looks like.

2. Technology can be a huge support to seniors, includ-ing everything from safety monitoring to FaceTime or Facebook for connectivity. The combination of these technologies, and the confidence that seniors feel after mastering various supports, enable feel-ings of empowerment and independent living.

3. Care providers also need to consider implica-tions for themselves as daily living begins to change for the care-receiver. The potential impact on transportation time or additional care required – in addition to running errands or supporting housework – should be consid-ered to ensure the quality of care isn’t being compromised.

There is an undeniable freedom and peace of mind for everyone knowing their loved one is living in a safe, secure and connected environment. The chang-ing Canadian population has called for technology and new innovation to help bridge this gap.

As daily living for seniors continues to evolve, so do the supports needed both inside and outside the house, and from those that are providing care.

Happiness in the home will be unique and tailored depending on the person, so it’s important to keep in mind there is no one-size-fits-all solution. LC

David Doyle is Director for Philips Lifeline Canada.

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Families living with

demen

AN UNEXPECTED VISIT to a hospital emergency department can be stressful for anyone. But it can be even more frightening and upsetting for a person living with dementia who may have dif-ficulty communicating and understanding what is happening around them.

That’s why the Alzheimer Society of Canada and the Older Adult Hospital Readiness (OAHR) team at the University of Alberta have partnered to create a new toolkit to help you and your family plan ahead and make your next hospital visit a more positive experience for everyone.

Be Ready for an Emergency Department Visit is a toolkit of handy checklists and forms that you can complete with your family member who has demen-tia before a trip to the hospital becomes necessary. Each tool – About Me, Who Knows Me Best, My


Medications, My Wishes, My Ready-to-Go Bag and Plan Ahead for Going Home – helps families communicate the person’s needs while in the hospi-tal and when preparing to go home.

“A person with dementia may have trouble remem-bering details about their health conditions and the supports they use at home and find it hard to express themselves verbally,” says Mary Schulz, Director of Education at the Alzheimer Society of Canada. “This toolkit makes it easier for family caregivers to share vital information about the person in a busy emer-gency department. When hospital staff know what supports and comforts the person, they’re better able to provide the care that’s needed.”

For example, About Me provides emergency depart-ment staff with essential information about the per-son with dementia. This includes the things that may cause the person to become agitated or anxious and the best ways of comforting them. Knowing how a person might behave also helps medical staff to make a timely and accurate diagnosis at triage and during the visit. This information is even more important in preventing common problems such as sedating the person with dementia unnecessarily or using urinary catheters instead of offering regular toileting.

My Ready-to-Go Bag provides a comprehensive list of practical and reassuring items to pack for you and your family member with dementia. These items include: the person’s MedicAlert® Safely Home® bracelet, advance directive, favourite snacks, bottled water and juice boxes. Basic care needs may be neglected in an emergency department. Having these supplies on hand during long wait times can prevent dehydration, hunger and unnecessary dis-comfort.

“These tools are really about putting power into the hands of the caregivers so they can advocate on behalf of their family member with dementia. Caregivers and emergency department staff can work hand-in-hand to create a successful visit for all involved. Ultimately, we want to make sure we help people with dementia live at home longer,” adds Schulz.

The tools are free and available at the Alzheimer Society website: In English: alzheimer.ca/hospital-visits or in French: alzheimer.ca/visiteshopital While on the website, you can also find more information about Alzheimer’s disease and other dementias, and locate an Alzheimer Society in your community for help and support. LC

Submitted by the Alzheimer Society of Canada

entiaNew tool that helps plan ahead for hospital visits


A RAPIDLY AGING population and the rising tide of dementia is placing a staggering respon-sibility on informal caregivers. It’s estimated that the majority of people with dementia – as many as 90 per cent – will exhibit one or more chal-lenging behaviours during the course of their disease. Baycrest Health Sciences is reaching out to families caring for a loved one with dementia with a new and important online support.

Baycrest’s mental health portal (www.baycrest.org/mentalhealth) offers videos about challenging behaviours related to dementia, and techniques for responding to those behaviors in ways that enhance

the quality of life for the person with dementia. The educational resource – titled, Behavioural and Psychological Symptoms of Dementia (BPSD) – is designed primarily for family caregivers who want to keep their frail loved one at home for as long as possible, and stay well themselves.

Peter Irwin is on this difficult road, caring for his wife Margo, who has advanced dementia. Struck at age 62, in the prime of her life and professional career, and a mother of two, Margo was diagnosed with mild cognitive impairment (MCI). MCI can sometimes reverse or remain stable; for Margo, her impairment progressed rapidly within a year to full-

Baycrest offers support with online educational resource

and

2016

Dementia with challenging behaviours takes a huge toll on caregivers

Caregiversmental health


This article was submitted by Baycrest Health.

blown Alzheimer’s disease. Their world changed, Peter sold his business, becoming a full-time care-giver, while Margo continued her decline. This story is not unique.

One person in every 1,000 under the age of 65 develops Young Onset Dementia. Margo, a vibrant, artistic woman declined quickly, exhibiting pro-found memory loss and behavioural changes that became increasingly difficult for Peter to manage at home, even with a team of hired caregivers and the tremendous support of family and friends. She is now in Baycrest Hospital in an advanced stage of Alzheimer’s.

“The only comfort I can take in this horrific night-mare is that she was blissfully unaware of what was going on,” says Peter, who is grateful for the exemplary professional support he has received dur-ing the past four years. Baycrest’s multidisciplinary experts, from doctors to social workers and occu-pational therapists, and the Behavioural Support Outreach Team, have been with him and his family every step of the way.

“I had no idea what was coming at me. Just when you think you’ve got things under control, every-thing changes, and then changes again and again,” says Peter. He is sharing the wisdom he has gleaned from his four-year caregiving journey in seven video-clip talks that are part of the educational resource. Peter’s talks are titled: “It’s out of your control,

“Educating myself”, “Asking for help”, “The behav-iours”, “Learning ways to cope”, “Talking about it”, and “Transition from home care”.

Visitors to the website will find additional video talks delivered by Baycrest clinicians.

“When a person with dementia is distressed, it greatly affects the caregiver,” says Dr. Robert Madan, Baycrest’s Chief of Psychiatry and project lead for the mental health website. He estimates that anywhere from 50 to 90 per cent of people with dementia will exhibit “responsive” (challenging) behaviours dur-ing the course of their disease.

“Caregivers are very well intentioned, but they need support too,” adds Dr. Madan. “Caring for someone with dementia is not a sprint, it’s a marathon. You have to pace yourself and learn to reduce your intensity of caregiving by seeking out community supports, so you can stay well.”

The quick link to the BPSD page on the mental health website is www.baycrest.org/bpsd.

Last year, the website launched its first education module on Late-life depression to offer information and encouragement to seniors and families affected by this illness. Anyone experiencing symptoms of depression or feeling stressed and alone as a care-giver to someone with dementia, needs to reach out and ask for help, says Dr. Madan. Baycrest’s mental health portal is a good starting point. LC


RETURNING HOME from a hospital stay is a transition worth celebrating! Coming back to a familiar environment and the comforts of home can go a long way to mending spirits and physi-cal ailments. Although your loved one might

not need round-the-clock care; pain, mobility, poor vision or other impairments can greatly affect home activities. Ensure your loved one’s return is a safe one by preparing your home before the big arrival and following the tips below.

By Christina Zimmermann

Christina Zimmermann is Communications Specialist at VHA Home HealthCare.

Preparinghome

for a loved one’s return from hospital

your

Remove tripping and falling hazards. Ensure that the path to your home is clear of snow, leaves and other debris. Inside, items such as throw rugs, electrical cords and clutter (e.g. children’s toys, boxes, shoes in the front hallway) may be harder for your loved one to navigate because of mobil-ity issues. Be sure to move these out of the way and have clear paths throughout the home. Keep rooms well-lit so that objects left by family mem-bers or pets can be seen. Remove any furniture on wheels or make sure they are in a locked position in case your loved one leans on them for stability. Avoid using wax cleaners on floors since they can increase slipperiness.

Keep frequently used items handy. Keep items like television remotes, portable telephones, books, glasses or a favourite mug in a central place nearby for easy access. You may also want to leave food sup-plies at waist to shoulder level so your loved one can access them without reaching or bending– move-ments that may cause discomfort.

Be seating friendly. Your loved one may feel dizzy or tired after a hospital stay and may need to rest more often. Add firm pillows to low chairs and flat surfaces to provide seating options around the

house. Have a seat at the entrance of your home so your loved one can remove or put on shoes or boots from a comfortable position.

Create a one-floor space. If your loved one can’t navigate stairs easily, you may need to set up a bed-room on the main level. Have a lamp or flashlight near the bed for easy access and use a night light. Consider a commode for the bedside if frequent or urgent bathroom trips are necessary in the night.

Planning the transition from hospital ahead of time will help ease your stress as a caregiver and ensure your loved one remains as safe and independent as possible while enjoying the comforts of home. Visit www.familycaregiving.ca for more resources and insights on a range of caregiving issues. LC


According to a recent survey conducted by the Royal Bank of Canada, 83 per cent of Canadian seniors want to live in their own homes for as long as possible

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WITH MUCH OF THE WINTER behind us, but several weeks of cold ahead, caregivers are particularly susceptible to the “winter blues.” While deeply rewarding, caregiving can also be extremely challenging. Stress, exhaustion, isolation and financial burden can be com-pounded during the winter months when it’s hard to get out of the house and daylight is limited. Manon Desjardins-Nighbor, a care coordinator with the Champlain CCAC, says it’s vital for caregivers to carve out time for themselves wherever possible and stay con-nected with the outside world.

“The winter months can be extremely isolating for caregivers – it’s so important to recognize signs of social isolation and know how to stay connected,” explains Desjardins-Nighbor. Maintaining a social network can help ease feelings of loneliness and boredom.

Desjardins-Nighbor offers a number of tips for caregivers to cope with the winter months:

• Reach out to friends and family regularly. Sharing your feelings and experiences can help others better understand your needs and how to help you.

• Consider joining a support group – you might be surprised at how good it feels to connect with other caregivers.

• Make a deliberate plan. Invite a friend or neigh-bour for coffee.

• Try to keep humour in your life to lift your spirits. Watch a comedy or read something uplifting.

• Accept any help offered and don’t be afraid to ask for help. Many people want to help but don’t know how – and they may assume you will ask for help when you need it.

• Let go of guilt. Recognize that you are doing the best that you can.

• Consider respite care. It is important to reener-gize and take care of yourself as well.

• Be kind to yourself, reassess how much you can do. What is important to you?

• Practice saying no to other demands when you’re feeling overwhelmed.

• Try to focus on positive thoughts. Focus on what you and the person you love can still do instead of the abilities lost. LC

Manon Desjardins-Nighbor

Caregivers prone to winter blues

Ask the expert:

Learn more about caregiver programs and supports:

www.champlainccac.ca


Desjardins-Nighbor offers a number of tips forcaregivers to cope with the winter months:

• Reach out to friends and family regularly.Sharing your feelings and experiences can helpothers better understand your needs and how to help you.

• Consider joining a support group – you mightbe surprised at how good it feels to connectwith other caregivers.

• Make a deliberate plan. Invite a friend or neigh-bour for coffee.

Learn more about caregiver programs and supports:

www.champlainccac.ca


Dear Nira:

My 69-year-old wife has been diagnosed with early-stage Alzheimer’s disease. I am reluctant to share this news with family and friends as I’m afraid they will start to treat us differently. What should I do?

My Secret

Dear My Secret:

We have come a long way in terms of society’s understanding and acceptance of Alzheimer’s as a disease, just like many other illnesses. But it is dif-ferent because it impacts personality and thinking – and that can be challenging and uncomfortable for many people to deal with.

This is going to be a long journey and I can’t empha-size enough that you will need the support of people around you.

I strongly recommend you sit down with your close family members and break this news. Even if symptoms of Alzheimer’s are not read-ily apparent in your partner at this time, and it seems easiest to keep the secret and maintain the façade that all is well, you know deep down that this won’t last.

Sometimes the motivation to keep a dementia diag-nosis a secret is driven by something much deeper: embarrassment. It is not your fault or your partner’s fault to have this in your life.

Families often bring complex dynamics to the table, but a health crisis can clarify very quickly who is going to be there for you on this journey. I think you will be surprised to find that some family members will “dig deep” and really want to help. But they can’t be there if

you don’t let them in. Start with a frank discussion, perhaps over a coffee with family who you feel are closest to your wife. Every family member can have a role or be part of your support network whether they live close by or at a distance.

As for your friends, their reaction to the news and their behaviour in the weeks and months ahead will help you to differentiate between friends you can count on for unwavering support and those who will quietly drift away.

Make sure to find a good health professional (such as a nurse or occupational therapist) to be a trusted coach for this marathon journey; someone connect-ed to the community and all the available health-care supports who you can plan and troubleshoot with when challenges arise.

Educating yourself and joining a local caregiver sup-port group if there is one in your area is also a good way to feel less alone and more empowered.

Understand that help can be offered in many ways large and small. You and your partner should never have to feel alone on this journey. LC

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

and in private practice. She is the co-author of Dementia: A Caregiver’s Guide available at Baycrest.org/dacg. Email

questions to [email protected]. Reprinted from The Toronto Star, with permission from Nira Rittenberg.

Share Alzheimer’s diagnosis with your family

Nira Rittenberg

Caregiver SOS


YOU MAY BE NOTICING some subtle changes while visiting your aging parents in their home, leaving you with nagging questions about wheth-er it is time to organize some extra homecare. Although it is your responsibility as an adult child to actively monitor or manage your parents well being, it is often challenging to negotiate the conversations, decision making and choices about how to best support your parents aging independently. Some important signs to consider:

Health of caregiver. If your parents are still living in their home together, you should evaluate their health as caregivers. One parent may require more care than the other and it is important to engage in honest dialogue about whether having a parent act as the primary care-giver, is sustainable and safe.

Forgetfulness. Are your parents becoming more forgetful, leaving bills unpaid, forgetting the name of a friend, ask-ing the same question repeatedly, leaving a pot on the stove or more importantly forgetting to take required medications? These signs may indicate a need for an evaluation and should be mentioned to their doctor.

Household cleanliness. Have you noticed a decline in the general cleanli-ness and organization of your parent’s home? Is the home more disorganized, with increasing amounts of clutter that could pose a tripping hazard or is the laundry piling up? These signs may indicate that your parents are less mobile, have less energy and/or ability to manage household chores or could be a sign that they need to have their vision or memory checked.

Changes in mood. For many children it can be sad to see a decline or change of personality in their aging parents. Are your parents losing interest in activities, becoming more socially isolated, displaying apathy or express-ing fears about engaging in activities outside the home or driving? These kinds of emotional signs may be a natural response to the process of aging or could indicate more serious issues such as depres-sion or dementia requiring a proper assessment by professionals.

Weight loss. If your parents are losing weight or not eating enough fresh foods this could impact their overall health. It may simply be that they have lost the energy to cook or prepare meals, but should be monitored if related to serious underlying health issues or is coupled with concerns about malnutri-tion or dehydration.

Poor hygiene, self-care and grooming. You may have noticed that your parents are not man-aging their own hygiene or wearing the same clothes everyday, which could indicate a loss of energy or memory or be related to not doing the laundry, not bathing regularly or having issues with progressive incontinence. Early signals related to self-care are important indicators that your parents could benefit from help coming into the home.

Encouraging your parents to bring care services into the home and express their wishes when they are capable will help foster better dialogue and family consensus. When facing a health crisis or when issues present themselves, having a candid, honest conver-sation is sometimes easier said than done, as homec-

Aging parentsBy Janet Balfour

When do they need homecare?


are decisions are intertwined with issues of autonomy, independence, self-esteem and mortality. Here are a few tips for having a more productive conversation:

• Talk openly with your parents about what you are seeing and why you are concerned

• Ask how you can offer help • Listen and be patient• Give time to think and reflect, as it may take many

conversations to develop a good plan • Communicate that help can prevent more serious

health outcomes or hospitalizations• Let your parents know that homecare supports

could also help you• Get their doctor involved, as he or she may be a

trusted ally

It is important to know that you may encounter resistance when broaching the topic of care, so you might begin by suggesting a trial for help with house cleaning, gardening, rides or shoveling the drive-way. Early help from homecare or personal support workers could slowly introduce your parents to the

benefits of caregiver support, which overtime can ease the friction of introducing more medical related home health care services. It is important to actively monitor the health and well-being of your parents, regularly confer with all caregivers and revisit any care plans seasonally, to identify new care needs and adjust homecare services accordingly.

Once you have decided to secure home care, you can now consider your options for hiring the best local caring professionals. You might find options by talk-ing to your parent’s doctor or family health team, or through helpful online resources, such as Healthline.ca or 211.ca or Senioropolis.com. There are also a number of quality homecare agencies that can orga-nize this care for you or you may choose to find help through new online caring marketplaces that allow you to choose your own caregiver, contract directly and offer you great savings if budget is a factor.

Mutual love and trust, along with good planning and open dialogue can promote the best care outcomes for your parents. LC

Janet Balfour, PhD, RSW is President of eAdvocate.com


CANADIANS AGED 65+ represent 16 per cent of the population and include 5,700,000 Canadians according to Statistics Canada. The numbers are expected to balloon to 25 per cent by 2036. Today there are more people in Canada 65 and older than under 15.

This surge in The Age Wave is intensifying the demand for care. A survey commissioned by the Canadian Medical Association says that 61 per cent of Canadians over 45 are wary that hospitals and long-term care facilities will not be able to accommodate their changing needs as they age.

The idea of boomers (born between 1946 and 1965) caring for their parents as well as their

children and spouses/partners has become a real-ity in many households as families struggle to keep loved ones at home.

These new demographics are forcing Canada’s health care system to undergo a myriad of chang-es. As a communications professional who’s worked in this older adult sector for many years, I consider this new-found focus on bridging the gap as family members transition from hospital care to home a refreshing imperative. All eyes are on the patient pathway, how we transition the ill and recovering from care facilities to home, a journey I believe we should view as a relay with the patient likened to the precious cargo, the baton.

A relay involves all athletes working together and supporting each other every step of the race, ensur-ing that each athlete starts their leg of the race feel-

ing prepared and at their best. And the hand-off of the baton symbolizes each step of the patient path-way, transferring from the care of doctors to social workers to family members many of whom become caregivers. It’s crucial that this “patient hand-off” is done the same way as athletes passing on the baton- everyone involved needs to be alert and “in the know” at all times.

Today, one in 12 patients is readmitted to hospital within 30 days of being discharged. Frequently this is as a result of a glitch in communication somewhere in the patient hand-off, or passing of the baton.

“Families can become overwhelmed when a loved one is transitioning from a hospital stay to home,”

By Mary Ann Freedman

home care

Retired physician Dr. Lew Freedman with boomer children Mary Ann Freedman and Billy Hitzig.

From hospital toBridging the transition


says Bruce Mahony, of Home Instead Senior Care in Toronto. “These challenges can be a matter of logistics – such as the time of discharge, whether their loved one is prepared to leave the hospital, understanding medication and other health-related requirements, and the next steps of their recovery plan. It can be very confusing and there can easily be a breakdown in communication.”

When patients are sent home unprepared, they can misplace or misunderstand discharge instructions leaving them vulnerable to a hospital readmission. To reduce this risk, a combination of specific care and coordination can secure a safe and successful transition.

Speaking as a daughter of a 91-year-old father who spent a lengthy time in hospital, I have a few of my own recommendations that I believe will contribute to a more person-centered approach in the patient pathway, enabling an easier hand-off throughout the process.

1. Health care professionals and family caregivers must collaborate. This can be done by initiating the conversation and building relationships with

those involved in the patient’s care and with com-munity resources including family doctors, phar-macists, Meals on Wheels, community centres and gyms.

2. Family caregivers should feel free to ask ques-tions and not be intimidated. Active dialogue and open communication between all those involved in the patient pathway is key. This will stem from building relationships with one another and being fully informed with all that’s involved in each stage of the patient experience.

3. As a caregiver, feel free to admit when you’ve had enough or are in over your head. Ask for help from friends, community resources and family doctors. Respite is also available from profession-al caregivers or, for older adults, with short-stays in retirement residences.

As our baby boomers and seniors age, the patient pathway can be daunting. But with open lines of communication and active engagement on all fronts, the baton won’t drop and the patient family is better served. It’s a win-win situation for everyone. LC

For more than 20 years, Mary Ann Freedman has been providing marketing and public relations counsel to health and

home care organizations in the 50+ sector. She is a well-recognized guest speaker, presenting at the Ontario Home

Care Association Symposium, and most recently, the Canadian Home Care Summit. Visit freedmanandassociates.com

to learn more.


IF YOU FIND these terms confusing or think they’re one and the same, you’re not alone.

We often use these terms interchangeably, but they actually mean two different things. Here’s what you should know.

Dementia is not a disease itself. It refers to a group of brain disorders that all cause similar symptoms such as memory loss and difficulties with think-ing and reasoning, language and problem-solving. These changes are severe enough to impair a per-son’s ability to carry out day-to-day activities.

Symptoms may also appear as unusual changes in a person’s mood or behaviour.

Many diseases can cause dementia. The most com-mon are Alzheimer’s disease and vascular demen-tia, which is usually brought on by a stroke. Other causes include Lewy Body disease, repetitive trauma and injury to the head, frontotemporal dementia,

Creutzfeldt-Jakob disease, Parkinson’s disease and Huntington’s disease.

Treatable conditions such as depression and thyroid disease sometimes mimic the signs of dementia.

Dementia can occur in people in their 30s, 40s and 50s but most often affects people aged 65 and older. Dementia, however, is not a normal part of aging; in fact, it can be present in the brain for up to 25 years before symptoms start to appear.

Dementia is also progressive and affects everyone differently. That means it worsens with time, but the course of progression varies from person to person, lasting between eight to 10 years or longer.

Dementia is fatal and as of yet has no cure. Early diagnosis is the best defense because it not only rules out other treatable conditions, but also quick-ens access to support so you can learn to live with the disease and plan for your future.

Dementia and Alzheimer’s disease:

is there a difference?


For early diagnosis to be possible, you must know the warning signs. Many people recognize memory loss as a symptom. But can you name the rest?

Watch for any of these 10 warning signs in yourself or someone you care about:

• Memory loss affecting day-to-day abilities: forgetting things regularly, struggling to learn or retain new information

• Difficulty performing familiar tasks: forgetting how to do something you’ve been doing your whole life like balancing a cheque book or getting dressed

• Problems with language: forgetting or substitut-ing words that don’t fit the context

• Disorientation in time and space: not knowing what day of the week it is or finding your way in a familiar place

• Impaired judgment: not recognizing a medical problem that needs attention or wearing light clothing on a cold day

• Problems with abstract thinking: not under-standing what numbers mean on a calculator, for example, or how they’re used

• Misplacing things: putting objects in strange places, like an iron in the freezer or wristwatch in the sugar bowl

• Changes in mood and behaviour: showing severe mood swings, from being easy-going to quick-tempered

• Changes in personality: acting out of behaviour such as feeling paranoid or threatened

• Loss of initiative: withdrawing from friends, fam-ily and favourite activities

If you, a friend or family member is noticing one or more of these warning signs, talk to a doctor.

Your local Alzheimer Society can also help you and provides a wide range of programs and services. For more information, please visit www.alzheimer.ca. LC

Treatable conditions such as depression and thyroid disease sometimes mimic the signs of dementia.

Look around you. Have you or your loved one been touched by the care and compassion of an outstanding nurse? Do you know a nurse who has gone above and beyond the call of duty? Now is your chance to acknowledge and recognize the nursing heroes in your facility or community.

Hospital News will once again salute nursing heroes through our annual National Nursing Week (May 9th to 15th) contest. We hope you will share your stories with us so that we can highlight the exceptional work that our nurses are doing and how they touch our lives.

Nominations can be submitted by patients or patients’ family members, colleagues or managers. Please submit by April 15th and make sure that your entry contains the following information:

Hospital News’ 11th Annual Nursing Hero AwardsNURSINGHEROAWARDS!

11 th Annual

Please email submissions to

[email protected]

• Full name of the nurse • Facility where he/she

worked at the time • Your contact information• Your nursing hero story

NOMINATE A NURSING HERO!

or mail to: HOSPITAL NEWS 610 Applewood Crescent Suite 401 Vaughan, ON, L4K 0E3

www.hospitalnews.com


What is caregiver burnout? The caregiving journey can be a joyful and reward-ing experience, but it does come with some pitfalls along the way. This is normal, and even the most organized and selfless caregiver will go through these low points every once in a while and experi-ence caregiver stress and burnout.

Caregiver burnout refers to feeling unable to con-tinue to provide the best care.

Whether you are a dementia caregiver, mental health professional, nurse, elderly parent caregiver, nursing home caregiver, or caregiving for a loved one, you’ve probably felt stressed out at least once in your day as you try to balance your role as a caregiver with your life outside of caregiving.

Avoiding caregiver stress and burnoutAlthough being a caregiver will bring a certain amount of stress, we know there are some things that can put a caregiver at increased risk for caregiver burnout.

Caregiver burnout refers to feeling unable to continue to provide the best care to the person or patient you are caring for, not because you aren’t trying or don’t want to, but because you are emotionally or physi-cally spent.

Caregiver burnout checklistSometimes caregivers don’t realize that they’re expe-riencing caregiver burnout even if they have acknowl-edged to themselves or to others that they feel an increasing amount of stress and pressure.

By Melanie Ramos

caregiver burnout?

Are you at risk for


This caregiver stress and burnout checklist outlines some key questions and warning signs to help you identify if you are at risk for caregiver burnout.

• Do you feel any symptoms of depression?• Do you feel you are being pulled in many

directions?• Do you feel like you are trapped in your role as a

caregiver?• Is there conflict amongst the people closest to you

and the person you are caring for?• Do you feel you are not getting support from other

people?• Is the person you are caring for placing unrealistic

demands and expectations on you?• Do you feel like you are unable to meet the expec-

tations and needs (physical and emotional) of the person you are caring for?

• Are you unable to communicate effectively with others around you?

• Is your health or the health of the person you are caring for getting worse?

• Do you feel overwhelmed?

Coping with caregiver burnoutIf you have identified with many of the questions listed above it is a sign you may need help coping with or preventing caregiver burnout.

It is important to start taking care of yourself as a caregiver. This may mean changing some things about how you care for yourself and/or getting some support for you, or additional help for the person you are caring for.

Just because you feel like you’re all alone in your caregiver journey, doesn’t mean that’s the case.

Talk to someone you trust like a doctor, family mem-ber, or friend if you think that you’re experiencing caregiver burnout. LC

Melanie Ramos is a communications associate at Saint Elizabeth Healthcare.

This article is printed with permission from elizz.com.

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