Caring for a Person Who Has Intellectual or Developmental Disabilities
If you are having any symptoms or have any questions, please call 811 to speak with a registered nurse 24 hours a day.
Who is a caregiver?
A primary caregiver is someone who provides basic care for a person who has intellectual and/or developmental disabilities. As a caregiver, you may be doing the following things for another person:
- Paying bills
- Running errands
- Giving medicine
- Keeping them company
- Providing emotional support
Sometimes it is difficult for people who have disabilities to communicate, especially with their healthcare providers or dentists. You may need to speak on behalf of the person you are caring for with their healthcare provider.
Here are a few tips to help:
- Tell the healthcare provider about the patient’s current and past health issues.
- Create a “health journal” in a notebook for the person you are caring for and bring it to healthcare provider’s appointments.
- Tell the healthcare provider about any medicine the patient is currently taking. Bring the medicines to the appointment or create a list of all of them. Include information about when and how often the person you are caring for takes the medicine. You should also write down the strength of the medicine (for example, does the person you are caring for take 150 mg or 200 mg?).
- Tell the healthcare provider about any noticeable side effects the person you are caring for has from the medicine(s).
- Don’t be afraid to ask questions.
Who should make medical decisions for someone who has disabilities?
When your child is a minor, you will make all of the medical decisions. If your child is unable to make their own medical decisions as an adult, a person who is legally responsible for making these decisions for him or her must be named. This person should be named in a legal document called a Personal Directive (or Health Care Directive in PEI). The document allows that person to make health care decisions for the patient. This person is called a delegate (in PEI, the person is called a proxy).
The delegate/proxy should talk to the healthcare provider about treatment decisions or end-of-life care for the patient. The healthcare provider should write these decisions in the patient’s medical chart.
How can I tell if caregiving is putting too much stress on me?
Caregiving can be very stressful. Common signs of caregiver stress include the following:
- Feeling sad or moody
- Crying more often than you used to
- Having a low energy level
- Feeling like you don’t have any time to yourself
- Having trouble sleeping or not wanting to get out of bed in the morning
- Having trouble eating or eating too much
- Losing interest in your hobbies or the things you used to do with friends or family
- Feeling angry at the person you are caring for
What should I do if I’m feeling overwhelmed and stressed?
These feelings are not wrong or strange. Because being a caregiver is so hard, some healthcare providers think of caregivers as “hidden patients.” If you don’t take care of yourself and stay well, you won’t be able to help anyone else.
Talk with your family healthcare provider about your feelings. Stay in touch with your friends and family members. Ask them for help in giving care. Asking for help doesn’t make you a failure.
Look for help in your community. You may start by asking your church or synagogue if they have services or volunteers who can help you. You can also ask for help from support organizations (see “For More Information” below).
FOR MORE INFORMATION
Caregivers Nova Scotia
Toll Free 1-877-488-7390
Prince Edward Island Home Care Program
Medical Care of Adults with Mental Retardation by CD Prater, MD; and RG Zylstra, EDD, LCSW (American Family
Physician 06/15/06, http://www.aafp.org/afp/20060615/2175.html )