When you or someone you love is living with dementia, you need support, compassion and the knowledge of how to help so as to make every day the best possible. Let our skilled and compassionate team be your guide in this journey.
Palliative care is an approach to caring for people affected by progressive, life-limiting illness. It focuses on helping the patient live as full a life as possible and on providing relief to physical, emotional and spiritual suffering. It helps patients pursue meaningful experiences and personal and spiritual growth. It also considers the patient’s family as part of the care unit and strives to address all illness-related issues and needs while preventing new issues from arising. Bereavement support for family members is also often a part of palliative care.
Palliative care is often a shared journey for patients, their families and the care team and open communication is very important. Each patient and family is different so sharing your questions, concerns and needs with your health care team is very important. Your team will provide information on technical and medical issues, help you to develop a home care plan, provide or suggest resources, and connect you to other support networks in your community.
Many Canadians say they would prefer to live out their last days in the comfort and familiarity of their home but supporting this process at home can be complex. Some things you need to consider are:
Consider that circumstances can change and recognize that sometimes the patient can eventually have needs that can no longer be met at home despite best efforts.
Even though death is a natural part of life, many of us avoid talking about it, especially to children because we want to shield them from pain. But children of every age benefit from being prepared in advance for the death of someone close to them. Talking to kids about death early gives them time to process what’s happening, to say goodbye and helps them develop a healthy attitude toward death. Speak about the situation honestly in an age-appropriate way and tell them the types of things that will happen in the future. This avoids leaving children to imagine inaccurate explanations. Let them know that their emotions and those of others around them are healthy and natural. If possible, provide extra support through school counsellors and grief programs. Here are some more tips about talking to children about death.
Caregiving can be mentally, physically and emotionally demanding. It is often hard to take time for yourself when caring for another person, but not doing so puts you at risk of burnout, irritability and illness. VHA’s Palliative Caregiver Articles offer suggestions on self-care while looking after an ill loved one.
While it is best to speak to your medical professional for details about care journeys, options include:
Advance care planning is the process of thinking through and sharing your health and care wishes in case you become too ill and unable to communicate later. It involves having discussions with family and friends, designating someone to make decisions for you when you can’t speak for yourself, writing down wishes, and talking with health care providers and financial or legal professionals. This video from the Speak Up Campaign for Advanced Care Planning is a good place to start.
In Ontario, Local Health Integration Networks (LHINs) arrange all government-funded health care services for people living at home. LHINs are responsible for deciding who receives care, the level of care needed and for how long. Call 310-2222 to contact your region’s LHIN and find out what is available for your specific situation. Your palliative home care is likely to include home visits by physicians, nursing staff, personal-support workers, hospice volunteers, as well as support from your family and friends. Certain equipment and supplies may be provided through your LHIN if you are eligible.
In many cases, families pay for additional private home care support. Some of these services may be covered by private health insurance policies so check with your insurance provider to determine coverage (if applicable).
For those on a limited income, additional funding options for services and equipment may be available through government and charitable programs to eligible applicants.