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The caregiver’s role
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Supporting a loved one in palliative care

The admission of a loved one into hospice palliative care is a life stage that may be difficult to accept. However, this care is also received with relief because it helps guarantee the well-being of your loved one. A good understanding of what it entails can make this step easier. So, what do you need to know about this care? How do you support your loved one and take care of yourself in your role? What resources are available to help you?


What is hospice palliative care?

Perhaps you have heard about hospice palliative care without really knowing what it covered? Palliative care aims to provide relief to a person with a critical or progressive illness, in addition to providing them with the best quality of life possible based on their rights, needs, condition, plans and desires. Depending on needs, it may include medical care such as taking medication, daily care such as applying moisturizing lotion, help with meal preparation or other services more specifically provided by specialists (e.g., occupational therapy, respiratory therapy, massage therapy, etc.).

Did you know that as a caregiver, you are entitled to care and support services? The palliative care medical teams are also there to guide you and help you face your loved one's illness and in case of bereavement.

As such, even though hospice palliative care belongs to what we call end-of-life care (care provided during the last year of life), the Canadian Hospice Palliative Care Association (CHPCA) would like to clarify that this is notably considered care that supports life.

 

What do I do in my role as a caregiver?

There are many options available for supporting your loved one in this period. This decision is made by respecting the wishes of your loved one, the recommendations of the medical team and your own abilities and desires.

Hospice palliative care may be provided in hospitals, palliative care homes (hospices), CHSLD (long-term care facilities) or at home. Although the experience is rewarding, caring for your loved one at home may be difficult to manage on a daily basis. To support your loved one in the way you want, it is above all important to determine your limits and your needs and especially, to recognize that there will be no right or wrong choices among these options.

Know that you are not alone in facing this challenge: the medical team is there to answer your questions and to guide you in your reflection. In addition to doctors and nursing staff, you may also benefit from the support of a palliative care psychologist who will be able - among other things – to reassure you about the care received by your loved one. To find out more about psychological care, read the interview conducted with Jean-Marc Duru, palliative care psychologist.

 

What resources are available?

For more information on palliative care, you can address the nursing staff or social worker who is supporting you. They will refer you to the resources that are available in your community, such as:

  • Caregiver associations
  • Volunteer support
  • Financial aid programs

Other resources are also available:

  • Association québécoise des soins palliatifs (AQSP) [in French].

                  - Fiche d’information sur les soins palliatifs pour les patients et les proches aidants

                  - Bottin des maisons de soins palliatifs classées par région

 

  • By telephone: Association québécoise de soins palliatifs (AQSP) : 514-826-9400

 

The counsellors at Caregiver Support can lend you a sympathetic ear, support and give you referrals. If you feel you need someone to listen to you or if you want to talk about the problem, we are here for you. You can reach us at 1-855-852-7784, or by email at [email protected]


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