Caregivers tend to neglect themselves and focus on the person needing care. This is a very unselfish act; however, caring for an HH child or adult is not like any other job. You don’t get to leave and go home at the end of the shift; this job is fulltime and 24/7. You will get tired and need a break or just some help. Lets look at some of the possible sources of help reported by families.
Families and friends can be a great source of support. They tend to jump in immediately with no questions asked. This is great; however, sometimes families and friends very quickly realize that caring for HH is somewhat more complex than first thought. Educating families and friends as to the condition of HH and the special care that goes along with it is key. Giving family and friends the tools necessary to work with HH provides them with a level of confidence. These tools are needed to diminish fears associated with caring for an HH child/adult. Some examples of tools caregivers may need are:
- Medications and schedule
- How to monitor temperatures and/or salt levels
- Mood issues (anything that triggers a change in mood)
- What to do when the mood changes
- Special foods, toys, T.V. shows, movies that calm
- Sleep schedule and routines
Don’t think that this is all, there are many other tools that your individual child /adult may need.
Churches and religious groups often provide volunteers that will come in and assist you from time to time. Perhaps as the child sleeps you can get a chance to shop, get errands done, read a book, attend a spa or get some sleep yourself. These organizations can also provide the counseling support to parents and families as well as away time for the other kids.
Local organizations such as the Epilepsy Foundation (www.epilepsyfoundation.org) are another source of support. Most communities have small support groups run though local hospitals or individuals that provide a place to listen, learn, and speak. These groups may not necessarily have anything to do with HH, however there are so many facets to HH that a group dealing with other neurological issues may be close enough.
City and State agencies are another source of support. These agencies vary from area to area. Checking with local social service agencies may provide some relief. There are some national organizations that at times provide local listings: (www.childneurologyfoundation.org, www.parent.com) In some states agencies provide respite care (licensed provider homes that will care for your child/adult over night or weekends upon request). This provides well-needed breather time in the caring of your child/adult.
As the primary caregiver, it is not selfish to ask for help or support. When you are tired and exhausted, you cannot be effective. Allow yourself the opportunity to be re-energized and ready to continue on the life-long journey of HH.