Every day more Ontarians are becoming caregivers: spouses, adult children, friends and relatives. Although this experience brings many rewards – a chance to give back, to re-bond, to develop shared memories – caregiving can also cause considerable physical, emotional, and financial stress for the caregiver. It is a role that often comes unexpectedly with little preparation or training. Ontario seniors’ groups stress the importance of caregivers taking time to assess their needs, learning what helpful resources might be available and asking for help when they need it.

17.1 What Caregivers Need

The current literature on this subject suggests caregivers need:

1. Education about the conditions your loved one faces
2. Emotional/psychological support – you can’t do it alone
3. A working knowledge of the health care system
4. A network providing access to information, products and services
5. A flexible, responsive care plan for the care receiver
6. A flexible, responsive care plan for you
7. Basic first aid training and information about caregiver safety (e.g. safe ways to lift someone without injuring yourself)
8. Someone within the health care system who can guide you, like a social worker, discharge planner or case manager

How to Ask for the Help You Need

When someone asks you how they can help, you need to be prepared with an answer. Here’s how to define the help you need.

1. Create an unemotional list of all things that need to get done. Group the tasks into distinct categories – personal care, household chores, transportation, etc.
2. Then make another list of all the things you worry about – What happens if my loved one falls? How will I pay for long term care? Group the worries into categories, such as emergency situations, financial issues, your own health.
3. Review the first list and decide which items on it you dislike doing more than others, which ones you enjoy and which you believe you must continue to do. You can now accept help with a list in hand. Review the second list and start to create a plan to address the “what ifs”.

A Caregiver’s Ten Step Action Plan

Caregivers need to continually think ahead and prepare for the next caregiving crisis. While most caregivers realize that changes in medical status could lead to a difficult decision about care or housing, too few caregivers take the logical step and plan for the decision. A family conversation often needs to be held to discuss what needs to be done now and as time goes by. Here are ten steps you can take to begin the development of a care plan.

1. Start talking about what your family members 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 required?
2. Try to avoid making promises you may be unable to keep. If a spouse or parent asks you to promise never to put him or her in a nursing home, you may want to reply: I promise I will do the best I can; I promise I will always be here for you. You must always keep in mind that the safety of your loved one is paramount.
3. Understand the critical role of legal and financial planning. Start to gather information about the person’s financial security; learn where original documents are stored. Ensure individuals have prepared necessary documents such as wills, advance directives and powers of attorney.
4. Ask questions about the health care system; understand what alternate accommodations exist, how home care operates, what social services are available. Imagine the setting that best fits your loved one’s personality and interests.
5. Face the realities: will you have to make decisions about driving, cohabitation, placement?
6. Be aware of losses to come so you can be prepared to better cope with them:

• incontinence
• memory loss
• wandering concerns
• the inability to recognize you

7. Talk within the family about how you plan to divide responsibility for your loved one’s care and wellbeing.
8. Talk to your peers about how they are facing the challenges of caregiving, the problems they have encountered and solutions they have found.
9. Be aware of what you may lose:

• privacy
• social life
• income
• work opportunities

10. Appreciate what you can gain from caregiving:

• a new relationship
• new skills
• increased compassion, growth
• new friendships
• the building of memories

The key: Think ahead and prepare yourself and your relatives for what may happen so when your caregiving journey is over you can honestly say, “I have done the best that I could.”

17.2 How You Know a Loved One Needs Help

On the outside things may appear normal. However some changes may be hard to see. A basic rule of thumb applies: if you are worried about a spouse, parent or friend, he/she may need help. What kind of help may be determined by using the following capability lists.

Specialists in gerontology evaluate seniors’ abilities using two lists. The first is “Activities of Daily Living” or ADLs. If your spouse, parent or friend has problems with any of the following, the need for outside help or other intervention is obvious and critical:

• Continence
• Eating
• Getting in and out of bed
• Toileting
• Bathing
• Dressing
• Safety

The second list is “Instrumental or Intermediate Activities of Daily Living or IADLs”. It is more difficult to know if an individual has problems with any of these unless you live with them. This is where your observation on visits can be critical.

• Managing finances
• Using the telephone
• Shopping
• Preparing meals
• Housekeeping
• Doing laundry
• Using transportation
• Managing medications

Please remember: Even though help may be needed in one or more of the above, a senior can still remain independent with adequate in-home supports.

Things to look for when you visit to assess if outside help is needed:

• Your loved one is consistently dressed improperly.
• There is a lack of attention to personal hygiene.
• Overdue bills, unopened mail lie on the table.
• Laundry is piling up.
• There are cigarette burns on the furniture.
• There is unexplained weight loss.
• There are bruises or other signs of trauma (from falls or abuse).
• There are blackened pots (stove problems) or the refrigerator is too empty/too full (improper eating habits).
• He/she is exhibiting unusual behaviour i.e. not telling you things, becoming anti-social or reclusive.

The list above does not go into cognitive symptoms, which may indicate a more serious problem. If you see things like your loved one getting lost while out driving or walking, severe personality changes, lost sense of time or consistent confusion, seek medical attention immediately. Another way to determine how to proceed is to call a family meeting. This way everyone – parents and adult children – will understand the problems; all will have a chance to participate in the solutions. If a sibling is out of town, try to set up a teleconference. The only reason a family member should be excluded is if he or she is too mentally impaired to understand or contribute and would impair any progress.

Contact your Community Care Access Centre (CCAC) and ask for an assessment to help determine a course of action.

Other resources:

Home Care Ontario
Telephone: 905-543-9474
www.homecareontario.ca

Healthy Ontario
www.healthyontario.com; click on Community Resources

17.3 Adult Day Services/ Programs

Day programs for seniors and other chronically ill adults can offer a tremendous relief for both caregivers and their families. Spending time in a different environment gives the senior a sense of independence and control which is so critical for many seniors. For caregivers these few hours can be a welcome respite -- time to accomplish personal goals or just quiet time alone.

Adult day programs are available in most communities; they generally last for 2 to 6 hours and offer snacks, a hot meal at lunch and recreation activities. Some programs may also offer transportation. There is a modest fee. Contact your CCAC for further information.

Other resources:

The Ontario Community Support Association
Toll-free: 1-800-267-6272 (OCSA)
Web site: www.ocsa.on.ca and click on Care Finder

There are day programs for those with Alzheimer Disease or related dementias. If you need such a program contact the Alzheimer Society of Ontario; they will refer you to your nearest Alzheimer Society chapter who will then connect you with local resources in your community.
Alzheimer Society of Ontario
1200 Bay St., Ste. 202
Toronto, ON M5R 2A5
Phone: 416-967-5900
Fax: 416-967-3826
Web site: www.alzheimerontario.org

17.4 Wandering Persons or Safely Home Registry

People suffering from Alzheimer Disease or a related dementia may have the tendency to wander away from their home or a facility and become lost if left unsupervised.

To provide peace of mind, caregivers can register their care receiver with Safely Home™ -- Alzheimer Wandering Registry. Safely Home will provide a numerical identification bracelet that a wanderer would wear. It assists police in identifying the person who is lost and safely returning the person home. It is a nationwide program developed by the Alzheimer Society of Canada in partnership with the Royal Canadian Mounted Police.

For a one-time fee of $25, the Alzheimer Society provides:

• an identification bracelet
• a Caregiver Handbook
• identification cards
• annual updates to the registrant’s file.

For more information contact the Alzheimer Society of Ontario: 416-967-5900 or www.alzheimerontario.org or contact the Alzheimer Society of Canada toll-free at 1-800-616-8816 or www.alzheimer.ca.

17.5 Personal Emergency Response Systems

A Personal Emergency Response System is an electronic device designed to let a senior summon help in an emergency. If the person needs help, he/she pushes a button or pendant. The home unit or communicator is activated and automatically dials a response centre. Trained professionals who have instant access to the individual’s complete profile and critical information will contact him/her immediately to see what help is needed. If there is no answer, help is sent at once. This service is advised for those who live alone or are at risk for falls.

There is a monthly monitoring fee that ranges between $25-$45 depending on the service you choose, and there may be a one-time set-up fee.

You can purchase the service through hospitals, community agencies or the companies themselves.

17.6 Long Distance Caregiving

Long-distance caregiving can be just as or even more stressful than being there. Long-distance caregivers may not be on site providing direct care, but they can be busy in their role as care managers — locating and coordinating services; negotiating with the care recipient, health professionals and family members; delegating tasks; monitoring the situation and making decisions. Telephone and travel may provide some relief but distance can heighten the caregiver’s feelings of anxiety and guilt. An extended period of longdistance caregiving exacts a heavy toll on the caregiver’s personal, family and work life.
In telephone conversations, gently probe for information about the person’s health and well-being. Listen for cues that may indicate problems. If possible, visit to assess the situation. Ask people who see the person often if they notice changes (e.g. spouse, neighbour, friend, professional).

Steps to take for more effective long distance care

• Arrange for a medical assessment, including a cognitive assessment by a family physician or specialist if necessary.
• Determine what care services are needed.
• Find out about available community resources.
• Seek help from local health departments and community agencies or private care managers.
• Find out who is available to provide help — family members, friends and acquaintances.
• Identify areas where you may need professional assistance.
• Draw up a list of care options.
• Develop a care plan.
• Discuss the care plan with the care recipient, family members, and the health care team, as necessary.
• If publicly funded services are not available, assistance from private care managers may also be available for a fee. Be sure to research associated costs.
• Investigate housing and relocation options.
• Create a care log or binder to keep track of important information.

A social worker or care manager located where the senior lives can work with you to make the assessment, develop the care plan and facilitate access to programs and services. The care manager can also mediate in family discussions and report back to you on a regular basis. Contact the CCAC located in the senior’s area.

17.7 Care for the Caregiver

One of the greatest gifts caregivers can give the people they care for is to look after themselves and their own health. The better caregivers’ physical and mental health remains, the better their chances are of being able to continue providing quality care. Putting your own needs first will also help prevent you from experiencing caregiver burnout.

Caregivers need to remember that if you lose your own health and consequently your ability to care, who will take over for you? Care for the caregiver should never be regarded as a selfish goal but rather an integral part of any sensible, enduring care plan.

Learn what coping methods suit you and use them. Exercise, go to movies, read, keep a journal – do what you enjoy but do your best to maintain a healthy lifestyle.

Resources:

Caregiver Network
Telephone: 416-323-1090
Web site: www.caregiver.ca

How to Care
Web site: www.howtocare.com

Support Groups

Support groups can provide both an opportunity to learn about new skills and care solutions from other caregivers as well as the opportunity to openly express the wide range of emotions all caregivers experience – ranging from frustration, anger and guilt to loneliness and grief. Other caregivers can offer the best support; they know what you are going through and are there to share and support, not to judge and censure. The first place to look for a support group is through the disease foundation or society associated with the illness your relative suffers from. A good resource on managing stress is the 17-page booklet “Coping with Stress”, a joint publication by the Heart and Stroke Foundation and the Canadian Mental Health Association (www.toronto.cmha.ca).

Other resources:

Canadian Mental Health Association – Ontario Division
Toll-free: 1-800-875-6213
Website: www.ontario.cmha.ca

Self-Help Resource Centre – The Ontario Self-Help Network (OSHNET)
Toll-free: 1-888-283-8806 (in Ontario)
Phone: 416-487-4355
Website: www.selfhelp.on.ca

VON Caregiver Information
Website: www.von.ca/caregiving.html

17.8 The Essential Role of Respite Care

Respite care is the break that caregivers get by allowing someone else to temporarily take over some of their caregiving duties. Used on a regular basis, respite care helps prevent caregiver burnout by relieving some of the caregiver’s workload and stress. Although respite care can benefit the care receiver, it must be regarded as essential for the caregiver.

Respite care usually takes one of three forms:

• arrangements can be made for someone to come into the home to look after or sit with the care receiver (even if the caregiver is at home)
• the care receiver can be booked for a short stay (overnight, weekend, a week or more) in a Long-Term Care Home or other facility
• the care receiver can be registered to attend an adult day program

Respite care should not mean having someone come in so the caregiver can go to the grocery store. Respite should be viewed as time for caregiver renewal, giving caregivers time off to relax, socialize with friends and family so they can recover from some of the stresses of caregiving and renew their energies to continue providing quality care.

Contact your CCAC for more information and referral.

17.9 Advocacy Groups

Caregivers are often put in the position of having to speak out for a loved one who no longer can speak for himself or herself. To do this caregivers need to learn how to make the system work for them and how to be proactive. Many caregivers, however, find this role extremely difficult and feel that if they become too demanding their loved one will suffer the consequences.

There are ways to advocate, to get what a caregiver needs but it takes effort and planning. Communicating effectively with health care professional is a skill caregivers need to learn. To prepare for meetings with a physician or other professionals, caregivers should make a list of the things they want to talk about and the questions they need to remember to ask.

At the end of every meeting with a professional, caregivers should ask themselves the following questions. If any of the answers are no, they need to go back to the health professional involved until they get the information they need.

• Was adequate description and instruction provided regarding care tasks?
• Were all my questions answered?
• Are the professionals involved maintaining regular contact with me?
• Am I included in evaluations and assessments?

In today’s health care system professionals respect informed, concerned caregivers who ask questions and who monitor care; it can make everyone’s job easier. If you have concerns about care or legal issues contact: The Advocacy Centre for the Elderly is a community based legal clinic for low-income senior citizens.
2 Carlton St., Ste. 701
Toronto, ON M5B 1J3
Phone: 416-598-2656
Web site: www.acelaw.ca

17.10 Information Management

Caregiving involves vast amounts of information and detail as the family meeting normally points out. Whether or not there is a crisis, everything should be recorded in one place so no detail gets lost. Good information management leads to better care.

Caregivers should start a care planner or care binder, which includes information on all facets of care. This can help caregivers stay organized, keeping much-needed personal and medical information available for quick access. It can also help centralize communication among all the formal and informal caregivers by providing a place for the care team to leave important messages for each other. The care planner or care binder can go with the caregiver on physician visits so medication information may be updated on the spot or on visits to Long-Term Care Homes to record findings while they are still fresh in the caregiver’s mind.

17.11 Compassionate Care Benefit Program

In January 2004, the federal government launched the Compassionate Care Benefit Program under the Employment Insurance Program. The program will pay up to six weeks of special benefits to a person who has to be absent from work to provide care or support to a gravely ill family member at risk of dying within 26 weeks. Unemployed persons on EI can also ask for this type of benefits. There are certain conditions that must be met.

For more information contact Human Resources Development Canada
Toll-free: 1-800-206-7218
Website: www.sdc.gc.ca/en/ei/types/compassionate_care.shtml

17.12 Vehicle Conversion

For those with mobility limitations their lives can be improved through the purchase of a wheelchair accessible vehicle or the modification of an appropriate vehicle. The Ontario March of Dimes has application forms for both vehicle modification funding and home modification funding.
Ontario March of Dimes
291 King Street, 3rd Floor
London, ON N6B 1R8
Toll-free: 1-877-369-4867
Fax: 519-432-4923
E-mail: hvmp@dimes.on.ca
National Mobility Equipment Dealers Association has an extensive list of companies who modify vehicles as well as a listing of mobility equipment suppliers.
Web site: www.nmeda.org/canada/canada.htm. Click on Modifiers.

17.13 Recycled Rental Equipment Program

March of Dimes Recycled Rental Equipment Program

The Recycled Rental Equipment Program provides short or long-term rentals of wheelchairs, crutches, ramps, lifting equipment and other devices. This program is particularly beneficial to individuals with a short-term need or rapidly changing condition, for whom purchase is impractical. Equipment is rented to those in need of a specific item, whether it is the result of injury, illness, aging or permanent disability. This innovative program accepts donations of used equipment in good repair. Equipment includes such items as manual and electric wheelchairs, scooters, crutches, walkers, lifting equipment, bath aids and home aids.
Ontario March of Dimes
Provincial Office
10 Overlea Blvd.
Toronto, ON M4H 1A4
Toll-free: 1-800-263-3463
Phone: 416-425-3463
E-mail: provincialoffice@dimes.on.ca
Web site: www.dimes.on.ca

Also contact your CCAC for information on renting medical equipment for wound care and management, client/patient lifts, mobility equipment, bathing equipment as well as client and caregiver safety equipment.

17.14 A Caregiver’s Credo

(Feel free to reproduce the credo and put it on your refrigerator to remind you to care for yourself).
1. Try to set limits around your caregiving -- a process which doesn’t happen overnight.
2. Realize that you operate on two levels -- intellectual and emotional -- and that they don’t always coincide.
3. Learn to be an advocate for your care receiver and for yourself.
4. Remember that other caregivers are your best source of unconditional support.
5. Admit when you need help. Don’t be a martyr.
6. Remember that you are the expert on the person needing care: outsiders can only offer advice. If you disagree with a suggestion made to you, work with others to find solutions that will work. Remember, caregiving is a two-way street.
7. Be assertive. Demand answers from everyone -- physicians, professionals and suppliers of products and services.
8. Ask questions constantly. “I don’t know” is a legitimate starting point from which to begin gaining the knowledge and finding the answers you need.
9. Consider that love may be doing what care receivers need, not always what they want.
10. Maintain your own health and lifestyle, friendships and activities. Remember what Shakespeare said: Self-love is not so vile a sin as self-neglect.