I am a caregiver

After someone close to you is diagnosed with a progressive life threatening illness or enters a palliative care program, you may wish to spend sometime reflecting on how you might best support this person. What does being a palliative caregiver mean for you and your loved one? What help do you hope to provide? What help are you able to provide? What types of support will my loved one and I need as his or her illness continues to progress? The Nova Scotia Health Authority’s Preparing For Death and Dying: A Guide For People with a Life Limiting Illness, Their Families and Their Friends is a good resource to help you answer some of the above questions and prepare for the journey ahead.

It will also be important to understand your loved one’s values, wishes and preferences in terms of their health and personal care. Advance care planning will assist you with this understanding. Advance care planning is a process that helps people plan for future health care decisions and choose who would make care and treatment decisions in the event that they are unable to speak for themselves. The Nova Scotia Hospice Palliative Care Association has a number of resources that will help you and/or your loved one begin this process if they have not already done so. A number of resources can be found here. However, if you are looking for a place to start you may wish to consult the following booklets:

Palliative Care and Other Healthcare Providers

The care and treatment of a terminally ill patient may be provided by a number of healthcare providers. Depending on the type and stage of an individual’s illness, care may be provided by a family doctor, a specialist such as an oncologist, or your loved one may be referred to a specialist care team who may consult with other care providers or provide direct care. Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is ideally provided by the people who know the patients the most working together with experts when they are needed. You can find out more about the local palliative care service in your area here.

As a family or friend caregiver you will be an important member of the care team. Depending on your role and relationship with the person with a life limiting illness, you may have to relay information to healthcare professionals about your loved one’s condition, help your loved one understand the context of their illness, relay information to other family and friends or make health care decisions for the person who is ill.

The Nova Scotia Hospice Palliative Care Association’s Advance Care Planning Booklets for Serious Illness and Cancer can provide you with some guidance regarding some questions you may want to ask health care providers about your loved one’s illness and what to expect. You may also wish to inform healthcare providers about your role in providing care, who they should contact if care decisions need to be made. This printable guide from Carer Help Australia also provides a list of questions you may want to ask when talking with health professionals.

When the person you care for approaches the end of life, they may find it difficult (or be unable) to communicate their needs and wishes. When this happens you will be an important link between the person you care for and their health professionals.

Be sure to keep doctors and other health workers informed of:

• their allergies and reactions to food or medications
• how they might think or feel in certain situations
• their wishes for end-of-life care
• if they would prefer care at home
• their wishes about comfort, pain relief, and treatment
• their cultural and spiritual preferences
• the nature and types of support you might need or have available to you.

Community Hospice Societies:

Nova Scotia has 14 community-based hospice societies working throughout the province.

Although services vary, many of the societies provide services such as volunteer support; assistance with obtaining practical, financial, and social support and connecting you with other supports that may be available to you in your local area. You can consult the NSHPCA service directory here to find a society close to you.

Additional Resources:

Depending on where you are in your caregiving journey, there are a number of government agencies that can provide you and the person you are caring for with some support:

211 Nova Scotia

Nova Scotia’s 211 service provides information on accessing services and supports in communities across the province. You can call 211 or search the website to find information on financial and legal services, food support, home care services and spiritual and cultural organizations.

Canadian Red Cross Equipment Loan Program

The Bed Loan Program provides loans of home-use hospital beds to Nova Scotia residents with delivery, pick up and installation provided.

Nova Scotia Continuing Care Services

Toll Free: 1-800-225-7225?

Continuing Care Services are provided to eligible people who need care outside of the hospital in their home and community. Care can be provided on a long or short-term basis.

Continuing Care Programs and Services include:

Home Care (Nursing, Home Support, Respite and Palliative Care), Home Oxygen Services, Adult Protection Services, Protection for Persons in Care, Aboriginal Continuing Care, Caregiver Benefit Program, HELP-Bed Loan Program, Personal Alert Assistance Program, Self-Managed Care Program, Supportive Care Program, Specialized Equipment Program and Respite Care.

Nova Scotia Palliative Care Drug Program

The Palliative Care Drug Program covers the cost of drugs needed to manage symptoms associated with end-of-life-care beyond the patient’s regular coverage.

Paramedics Providing Palliative Care At Home

Nova Scotia’s Emergency Health Services has a program which allows people in palliative care to access specialized support from paramedics at home. Please follow the link for more information or ask your health care provider about the paramedics providing palliative care at home program.

Caring for someone throughout their palliative care journey can be a very rewarding experience and deepen your relationship with the person you are caring for. The caregiving journey can also be emotionally and physically challenging for the caregiver and it is important that you take care of yourself in order to best support your loved one. It will be important that you take time for yourself and seek out additional support when you need it. Many resources provide advice for how to practice self care during your caregiving journey.

Caregivers Nova Scotia (Toll Free: 1.877.488.7390) provides support for family and friend caregivers throughout Nova Scotia. The organization can help connect you with information and peer support groups. Caregiver support coordinators are available if you are looking for someone to talk to or would like some advice navigating your situation. The website also has an extensive section on palliative care. If you need to take time off work to provide care or support for a family member who is gravely ill and is at risk of dying within six months, you may be eligible for compassionate care benefits for up to six months Employment Insurance Compassionate Care Benefit. There are also other Benefits Available Through the Federal Government that you may wish to investigate. You may qualify for certain tax credits for medication costs, equipment costs or costs associated with any home renovations you may have had to undertake to facilitate caregiving.

If you are struggling with the stress of caregiving, the Mental Health and Addictions Crisis Line is available 24/7 at 1-888-429-8167.

Please remember that there are many people available to help you with your caregiving journey and if you have any questions, please reach out to your local palliative care program, your local hospice society, or the Nova Scotia Hospice Palliative Care Association at 902-818-9139. Your local hospital and 911 are also available to you should you need support immediately.

Preparing for the Death of a Loved One

As your loved one’s illness progresses, decisions may have to be made about where and how they will receive care in the final stages of illness and death. Caregiving needs tend to intensify as end-of-life approaches. The booklet Preparing For Death and Dying: A Guide For People with a Life Limiting Illness, Their Families and Friends will provide you with an overview of what the dying process could look like and the types of support you might need. If you need assistance or have any concerns or worries about what is to come, you can reach out to your local palliative care service, your local hospice society here or you can call (902) 818-9139 the Nova Scotia Hospice Palliative Care Association and we will help connect you to the appropriate person or organization.

Some questions you may wish to direct to your care team are:

• What sort of symptoms will my loved one experience as the end of their life approaches?
• How will their caregiving needs change?
• If my loved one chooses to die at home, what types of care will they need in their final days?
• What things do I need to consider in making the decision to call 911 or admit my loved one to the hospital?
• Who can I contact for support?
• Are there any programs that will help support me and my loved one should they wish to die at home?
• If your loved one is admitted to the hospital, you may wish to inquire about their visiting policy and if they have any programs or volunteers that might be available to you and your loved one
• You may wish to prepare a bag of essentials for yourself and have a few personal effects or special items easily accessible for your loved one in case of a hospital or hospice admission.

Saying Goodbye

Although this is a painful time in so many ways, entering end-of-life care does offer you the opportunity to say goodbye to your loved one, an opportunity that many people who lose someone suddenly regret not having.

If you wonder what to say to your loved one, palliative care physician Ira Byock in his book, The Four Things That Matter Most, identifies the things dying people most want to hear from family and friends: “Please forgive me.” “I forgive you.” “Thank you.” “I love you.”

Don’t wait until the last minute to say goodbye. No one can predict when that last minute will come so waiting for it puts a huge burden on you.

Just talk, even if your loved one appears unresponsive. Hearing is the last sense to shut down, so even when your loved one appears comatose and unresponsive, there is a strong likelihood they can still hear what you are saying. Identify yourself and speak from the heart.

You don’t have to speak to say goodbye. Touch can be an important part of the last days and hours, too. Holding your loved one’s hand or giving them a kiss can bring comfort and closeness between you.

You can say goodbye many different times and in many different ways. You don’t have to formally issue a goodbye and say everything all at once. You can do it over days. Don’t worry about repeating yourself; this is about connecting with your loved one and saying what you feel so you are less likely to have regrets later about things left unsaid. Source: Hospicare.org (adapted from https://www.helpguide.org/home-pages/end-of-life.htm

When you became a caregiver for someone close to you with a serious illness, you likely had to make a lot of changes in your own life to be there for your loved one. You may have had to take time off work to provide care, taken time away from your own family, or had to take time away from your regular activities to support your loved one. You also may have been feeling anxiety and grief as you anticipated their death. When the person you cared for dies, you may feel a loss of sense of purpose, in addition to grieving their death. It may help to take time to reflect on your loved one’s life and remember the quality time that you were able to share together. You may experience several emotions during this period; sadness, grief, relief, guilt or you may feel numb as you adjust to your new circumstances. It is important to remember that your feelings are normal and to be kind to yourself. You may wish to take some initial steps to connect to the people and activities that bring you joy.

To help you navigate this next stage of your life, you may wish to review the Grief Section here of this website. Your local hospice society here can also help you find local resources to help support you. Do not hesitate to call the Association if you have any questions.