I’m caring for someone with a chronic illness or condition
A chronic illness is an illness, condition or disease that is persistent and/or long-lasting. Examples include (but aren’t limited to) cancer, heart disease, kidney disease, Parkinson’s disease, muscular dystrophy, multiple sclerosis and Amyotrophic Lateral Sclerosis (ALS). Some chronic illnesses, like ALS, are degenerative, which means the disease gets progressively worse.
The need for caregiving and the tasks that have to be done will vary depending on your loved one’s illness. You may also find you have more responsibilities over time if you are caring for someone with a degenerative disease.
Here are some ways you can help, no matter your loved one’s diagnosis or prognosis.
You can help your loved one by scheduling appointments, accompanying them to appointments, arranging home care visits and doing tasks around the house such as cooking meals. You may also need to make sure that important papers are organized and kept in a safe place. This can include insurance documents, wills, advance directives and other legal or financial papers.
- If you are the main contact for letting family and friends know how your loved one is doing, you may want to set up a special social media group. You could also create an email list
- Ask for help when you need it – tell family and friends what you need. Most people are willing to help but just may not know how to
You might need to help your loved one deal with their emotions and talk through difficult decisions that have to be made about care and treatment.
- Help them live as normally as possible. Encourage them to continue with their usual day-to-day life as much as they can
- Encourage them to share their feelings with you. Let them know it’s OK to express fears and concerns about what is going to happen
- Keep them company. Just being there can be comforting. Talk, watch movies together or listen to music
- Use touch when you can’t find the words. A squeeze of the hand or a gentle hug can say a lot
- Respect their need for privacy and to be alone. Coping with a critical illness sometimes means that you and your loved one have to take some time alone to think, reflect or just take a break
Personal care, physical and medical support
You may be asked to help someone:
- walk or move around with a walker or wheelchair
- get in and out of the tub or shower or give sponge baths in bed
- get into or out of a bed or chair or help them turn or roll over in bed
- use the toilet or bedpans or change incontinence pads
- brush their teeth, keep lips moist or rinse their mouth
- wash their hair, moisturize skin and trim their nails
- take and monitor their medications
- Determine what you are and aren’t comfortable doing. Be honest with yourself and the person you’re caring for about what you can realistically do
- Talk about your role – it’s important that you, your family member and the healthcare team know what you will be doing as a caregiver
- Look into what home care services are available where you live. Home care staff can help with administering medication, bathing and also teach you tasks like how to turn someone in bed
- Ask about getting assistive devices such as a walker, lift, wheelchair, shower chair, grab bar or portable commode or communicative devices
Medical interventions and end-of-life care
At some point, you may be required to make a decision about medical interventions, such as cardiopulmonary resuscitation (CPR). You may also need to make decisions about end-of-life care, which is a very difficult and emotional responsibility.
- Talk to your loved one about their wishes – having open discussions and making decisions together can help ensure their wishes are met and help avoid having to make rushed decisions during a crisis. It can also give you both comfort and peace of mind
- Help your loved one create an advance directive, which is a legal document that lets their health care team and loved ones know what kind of health care they want, or who they want to make decisions for them when they can’t
- An example of an advance directive is a Do Not Resuscitate (DNR) order, which means they don’t want CPR or other extraordinary measures to be taken
- End-of-life care primarily focuses on making the person as comfortable as possible, which includes relieving pain
- Talk to your family member’s healthcare team about any questions or concerns you may have regarding end-of-life care, including options for hospice and palliative care
- The simple act of physical contact – holding hands, a touch, or a gentle massage – can be soothing and make a person feel connected. Listen. Be present.
- Talk to a family member, friend or counsellor about your feelings and concerns
- See also, I’m caring for someone with cancer
- See also, I’m caring for someone with heart/stroke
- Download a caregiver’s guide to end-of-life care
- Contact the Canadian Hospice Palliative Care Association at www.Chpca.net or call 1-800-668-2785 for free resources and guides about hospice and palliative care
- For information about end-of-life care supports and services in Ontario, visit http://www.health.gov.on.ca/en/public/programs/palliative/palliative_questionsandanswers.aspx
- Connect with other young caregivers in our online peer support group or be part of the conversation in our online forum