Section Three: Caregiver Support
1. How can I get support as a caregiver?
As a caregiver, you will likely need support at some point in the journey. You may find it helpful to talk through your experience with someone. You may need practical assistance or respite care in order to be able to continue some of your normal activities.
The following agencies may also be helpful to you in this regard:
- • VON offer caregiver support groups
- • CCAC Care Coordinator
- • Your local hospice may have a program for caregiver support
- • Visiting volunteers who come to the home to provide support or stay in the home while you go out are often available in the community through various volunteer services.
2. Is respite or relief care available if/when it is needed?
The need for respite care can be discussed and potentially arranged with your Care Coordinator at CCAC.
3. Can I get home support through community care?
Through CCAC the following care can be arranged:
- • Visiting nursing in the home
- • Personal Support Workers for personal care
- • Spiritual Care (can also be arranged through parish)/Supportive Counselling
- • Physiotherapy
- • Occupational Therapy
- • Social Worker
- • SLP
4. How can people cope with the stress of being a caregiver?
While caring for a loved one who is ill is a very rewarding experience, it is important to recognize that every caregiver will experience stress at some time. Here are some tips to manage and prevent stress from escalating:
- • Pay attention to your own needs and notice when you begin to feel tired, irritable, or when you may experience any symptoms of stress at an early stage. Take time out for your own self care before your exhaustion and stress develop and become distressing. Remember it is normal to have these feelings. In order to care for your loved one, you will need to take care of yourself.
- • Talk with any professionals who may be involved in coordinating your loved one’s care needs. Ask if there is respite available for a couple of hours, or for a few days.
- • As much as possible, make the necessary arrangements to continue with the activities that you enjoy.
- • Nurture your spirituality. Take time for spiritual practices that are meaningful and calming.
5. Are there common feelings that caregivers experience?
You may experience a range of emotions. Some feelings will be comfortable and nurturing, while others may be more difficult to experience, such as anger, frustration, exhaustion, loneliness, and grief, as you cope with the losses that accompany illness. Many caregivers struggle with feelings of guilt when they want to get out and do something enjoyable, or perhaps when they are feeling irritable. Try to accept your feelings and be compassionate with yourself. All of these feelings are experienced by caregivers at some point in the journey. You may find it helpful to talk to someone, such as a priest, pastoral visitor, professional counsellor, or close friend who understands you. Some people find it meaningful to write out their feelings.
6. Who can I talk to/get support from?
Trained counsellors are often available through your family doctor, CCAC, local hospice, or the Family Ministry Office at the Diocese. If you have a nurse providing care in the home, you may talk over your concerns with him/her. You may wish to talk to a priest, or seek the support of the pastoral program in your parish. Caregiver support groups are led by the VON and run for approximately four weeks at various intervals throughout the year. Support is also available through various organizations that specialize in a particular illness (ALS Society, Cancer Society, Alzheimer’s Society). You can find information by looking up Caregiver Support (in your area) on the internet where you will find a number of resources, as well as online chat groups.
7. Are there volunteer visitors to the home?
Volunteer home visitors are often available through a local hospice, as well as through the VON and sometimes from your local parish.
8. What does a hospice program for the community involve? Who can access it?
Application for hospice is arranged by your CCAC Care Coordinator if you are making an application while home. A Social Worker will be involved with arrangements during a time of hospitalization. The hospice will arrange for an intake nurse to complete an assessment to determine if the individual meets the criteria for a hospice admission.
9. How can I be of support to someone in need?
It is very important to those who are caring for a loved one that they too feel support. Here are a few practical tips of items caregivers say they needed:
- • Offer to stay in the home to allow a caregiver some time out
- • Bring a meal to the home
- • Walk a dog/offer to care for pets during a hospital admission
- • Offer to drive children to school/activities or/and help with homework
- • Be available to listen and understand the difficult feelings that may be expressed
- • Offer to do some yard work, or shovel the snow
- • Offer to drive to appointments
10. How might I get support from my parish?
A simple phone call to the parish office will provide you with information on what the parish may be able to offer. You can also speak to the pastor about your needs to see if he knows of anyone who may be able to offer assistance.
11. Is there spiritual care for caregivers?
It is very important for caregivers to continue to nurture their spirituality. Contact the parish and ask to speak to a priest, deacon, or parish pastoral worker. If you have lost connection with a parish, this might be a meaningful time to renew that connection and reach out to your parish family. Spiritual care is available in most hospitals, hospices and in the home through CCAC.
12. Where can I get financial help?
The following on caregiver allowance is taken from the Ontario Caregiver Coalition (http://www.ontariocaregivercoalition.ca/caregiver-allowance.html)
What currently exists?
Currently financial benefits for caregivers in Canada are mainly in the form of federal tax credits or insurance benefits. The following outline the benefits currently available to Ontarians.
Wholly dependent person tax credit
A taxpayer may be eligible to claim a ‘wholly dependent person’ tax credit for a child less than 18 years of age or of any age if the child is mentally or physically impaired. To be eligible to claim this amount, an individual must not have a spouse or common-law partner, or they must be separated from their spouse - they cannot be supporting their spouse financially, nor can they be supported by their spouse financially; they must have supported the child in the tax year; and lived with the child in a home maintained by the individual.
Eligible dependent tax credit
A taxpayer may claim this credit for each person he/she supports who is dependent due to a mental or physical disorder and who lives with him/her in the residence that he/she maintains. Eligible taxpayers can receive a tax credit for their parent or grandparent by blood, marriage, common-law partnership, or adoption; or for their child, grandchild, brother, or sister, by blood, marriage, common-law partnership, or adoption if he/she is under 18 years of age or has impairment in physical or mental functions.
Family caregiver tax benefit
The family caregiver amount (FCA) is a non-refundable tax credit that helps Canadians with the costs of caring for a dependent with a physical or mental impairment who is living with the taxpayer. To be eligible, the dependent must rely on support for physical/mental impairment and have little or no income. Eligible dependents are relatives of the tax payer, including adult children, parents, spouses/common-law partners, and grandparents. Eligible individuals may be able to claim up to an additional $2,040 in tax credits (translating to a maximum of $306) above what they can already claim for an eligible dependent.
Disability tax credit
The disability tax credit (DTC) is a non-refundable tax credit used to reduce income tax payable on the income tax and benefit return. A person with a “severe and prolonged”impairment in physical or mental functions may claim the disability amount once they are eligible for the DTC. The purpose of the DTC is to create greater tax equity by allowing some financial relief for disability costs, since these are unavoidable additional expenses that other taxpayers don’t have to face. Caregivers of dependents or spouses/common-law partners may be able to have the DTC amounts transferred to their tax return if the eligible person does not need to claim some or all of certain non-refundable tax credits to reduce his/her income tax to zero.
Compassionate Care Benefit
Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is “gravely ill.” You can receive compassionate care benefits for a maximum of 26 weeks within the 52-week period that starts during one of the following weeks, whichever is earlier:
• the week the doctor signs the medical certificate; or
• the week the doctor examines the gravely ill family member; or
• the week the family member became gravely ill, if the doctor can determine that date (for example, the date of the test results).
13.How do I build a support team?
Palliative care teams work together with your other doctors, you and your family. Close communication is very important. Remember the palliative care team is meant to provide support to you and your family during each step of an illness, so they will make every attempt communicate with you, your family and your other doctors as often as necessary.
The principal members of your team include a doctor, nurse and social work palliative care specialists. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team.
14.What are my rights when I am a caregiver?
At some point many people, in particular family members, are called on to be a caregiver when someone close to them as a serious, life-limiting illness. The responsibility for caregiving is easiest when shared, so caregivers need to reach out for support from other family members and friends whenever possible.
If you have legal power of care, you have the right to intervene on behalf of the person who is ill when they are unable. It is easiest if this is done in consultation with others, in particular family members, but the final decision is the responsibility of the person with power of care.
If the patient is capable of making their own decisions, you as caregiver can provide feedback to the patient, but they will have final decision making power. It is your right to speak honestly and clearly about what you can and cannot do in providing care, so that the proper supports can be put in place without anyone feeling overwhelmed or too burdened.
15. What kinds of supports will I need?
The kind of supports you need will vary according to each individual/family and personal circumstances; your needs will also change as an illness progresses. From time to time you may simply need some help with household chores, to be able to go out for a walk, or run errands. You may need help in the home to care for your loved one, while you rest. As the needs for care increase, you may then require more professional support and care, such as Personal Support Workers, and/or nursing care.
16. How do you empower a person/caregiver to ask/demand for proper palliative care?
Many of us find it difficult to reach out and ask for help. We are used to giving to others and find it meaningful to be able to so. If you are a caregiver to someone who is seriously ill, however, it is essential that you accept the assistance of other sin order to minimize stress. Remember that others care and want to help out. In order for you to care for someone in the home, you will benefit from the assistance of friends, family and neighbours, as well as professional care in the home. Remember that accepting help from others frees up your own energy to be available for your loved one. If you try to do it all, you will become exhausted and no longer able to care for your loved one. We call this “caregiving burnout”. At first you may find it hard to imagine that you will become tired, but if you have this awareness, and are able to accept assistance, you will find that you can maintain your energy and emotional well-being.