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 and often life-limiting. 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 care recipient’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 family member’s diagnosis or prognosis.
Practical support
You can help your care recipient by scheduling appointments, accompanying them to appointments, arranging home care visits and doing tasks around the house. 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.
Caregiver tips:
- 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
- If you have to work less because of your caregiving role or if your partner can no longer work, you may be eligible for various forms of assistance from the Government of Canada
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
Caregiver tips:
- 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, hospital bed, shower chair, grab bar, portable commode and communicative devices
- Look into government assistance and rebate programs to help with the cost of medical equipment in the home
Emotional support
You might need to help your care recipient deal with their emotions and talk through difficult decisions that have to be made about care and treatment.
Caregiver tips:
- 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
- Respect their need for privacy and to be alone. Coping with a critical illness sometimes means that you and your care recipient have to take some time alone to think, reflect or just take a break
Medical interventions and end-of-life care
At some point, you may be required to make decisions about medical interventions on your family member’s behalf. You may also need to make decisions about end-of-life care, which is a very difficult and emotional responsibility.
If your care recipient is still able, talk to them about their wishes for future care. An open conversation now will help prepare you to make decisions about medical interventions and end-of-life care on your care recipient’s behalf as the disease progresses. Making decisions together can also give you both comfort and peace of mind.
Caregiver tips:
- Instead of focusing on medical interventions, your conversation should focus on your care recipient’s values and what’s important to them. What makes life worth living? What kind of living would they accept? What trade-offs would they make? What would make prolonging life unacceptable for them? When nearing death, what would make it peaceful for them?
- 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
Get help:
- 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
- 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 caregivers in our online support group
Not sure where to start? Call our 24/7 helpline or talk to us in our live chat to find resources in your community.
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