- Grief, preoccupation with guilt, and anger
- Uncertainty and confusion about the diagnosis
- Questioning or denying the diagnosis, thinking or acting as if "nothing is wrong"
- Attempting to be overly optimistic or dismissive
- Isolation - professionals or programs seem unavailable or inaccessible, family and friends may withdraw. Sometimes it feels like nobody understands or cares.
- Does he need assistance with bathing?
- Can she walk or eat by herself?
- Does he have behavioral issues that need attention?
- Does she need constant supervision?
- Does he have physical, occupational, speech, or behavioral therapy needs? Do these need to be carried out on a regular basis?
- Can others be trained to help care for and assist her?
- In what areas do you need help?
- What resources are there to help you? Don’t forget community, friends, family, and religious affiliations. Write down the names of people who have offered to help with anything.
- Make a list of ways people can help you. When they offer, you can be ready with some ideas that could really help. Even small acts, like cooking a meal, staying with your child or children for a couple of hours, or reading to your child while you take a much needed nap, can make a tremendous difference.
- Organize and record your child’s healthcare information and schedule. Type out the medications she needs, and her daily, weekly, and monthly activities. Create a notebook that contains all of the important information about your child (see our Care Notebook page). By keeping this information organized, you can easily take it to all of the doctor appointments, instead of repeating it each and every time. A care notebook also can help as a tool for other caregivers who may work with your child.
- Set goals in order to make things work for you. Break the goals down to small items that can be achieved in a very short time. Sometimes long-term goals can be overwhelming and it doesn’t seem we can ever reach them. By breaking big goals into steps, we can do small things until we meet the larger goal.
Family Caregiver Alliance
Here, you'll find information about education, services, research, and advocacy to support family caregivers. A navigator helps locate services.
Provides newsletters, message boards, and articles for family caregivers.
Care of the Caregiver Fact Sheet ( 48 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support center.
Green Tree Yoga - Audio Yoga Breaks
Yoga for You is for people of all ages, shapes, sizes and abilities. Take a quick yoga break at work, school, at home, or offer it at a meeting. Whatever you are wearing is fine. Just release some physical and mental stress as you listen and take an easy yoga pause. Be more productive, be more focused and relaxed, and be healthier. Several are specifically for kids.
See all Family Support Organizations services providers (7) in our database.
See all Local Support Groups, General services providers (70) in our database.
See all Recreation Programs/Activities services providers (249) in our database.
See all Recreation Therapy services providers (19) in our database.
See all Respite Care services providers (31) in our database.
For other services related to this condition, browse our Services categories or search our database.
|Author:||Tina Persels - 6/2013|
|Content Last Updated:||2/2014|