Jules' Weblog

Posted by Brain Tumor Research/Support [mailto:BRAINTMR@MITVMA.MIT.EDU] On Behalf Of SANDRA NORTON
Tips for Caregivers

The role of a caregiver to a brain tumor patient can be quite challenging but yet very rewarding. As things progress or decline with a patient, we find ourselves asking "what next, "what can I do", "what resources are available to me". Unfortunately, most caregivers are not afforded the information concerning their responsibilities, wasy of making care giving easier, etc.

LEARN ABOUT YOUR CARE RECIPIENTS MEDICAL CONDITION
Speak with the physician about your care recipient's diagnosis and prognosis. As what you may expect in the future. Spend time in the library or on the internet to conduct your research. Learn every thing you can concerning your loved one's illness or chronic condition. Knowledge will empower you to be a better caregiver.

BECOME N EDUCATED CAREGIVER
Try to attend caregiver training classes. Learn about hands -on techniques, such as transferring safely, proper skin care and lifting properly.

BECOME AWARE OF HAZARDS
Make your home safe for your loved one. Be aware of fire hazards such as stoves, other appliances, matches, lighters, and cigarettes. Watch out for loose rugs, cluttered pathways and inadequate lighting. Adjust the water heater temperature settings to prevent burns.
Install bathroom grab bars and non -skid rugs. These are just a few home suggestions.

WONDERING WHERE TO START?
Evaluate both your short term and long term needs as a caregiver. Start by listing those things you might need help with now and in the future. For example, a short term need might be to move your loved one's bed down stairs. A long term need might be a transportation issue to medical appointments. Contact your local health service for support and help.

NEXT MAKE A LIST OF ALL THE INFORMAL SUPPORTS
family members, friends, and neighbors and how each person can help. Repeat this process for formal supports such as home care agencies and transportation services. It is important to set a time frame for any action that needs to be taken. Having a plan for both formal and informal supports and implementing that plan will greatly reduce your stress as a caregiver.

PROTECT YOUR HEALTH
If you can't take care of yourself, you won't be able to continue to be a caregiver. See your doctor regularly, get screened for stress and depression, get plenty of rest, eat well balanced meals, exercise regularly and accept help from others. YOU ARE IMPORTANT

RECEIVE COUNSELING SERVICES
This is a service that I wished that was available to both Jennifer and me during her journey. Contact your doctor about these services.

MAKE TIME FOR YOURSELF
Set aside time regularly so you can pursue your own interests and hobbies. Providing care giving is stressful. All caregivers need time away - it's good for the care giver and the patient.

LEARN ABOUT OUT OF HOME OPTIONS
Here is another area that care givers are not given much information on unless the patient has been recommended for Hospice. Learn about in-home care options for help at home. Typical services include personal care, home maker, home delivered meals, transportation, and emergency response system. Many caregivers hire their own workers privately or pay an agency directly to provide care.

Check Your Local Agencies to see what services you and your loved one will be entitled to. One may also want to call Life Stream Services, Inc at 1-800-589-1121 (USA)

I cannot attest to how this agency works but it may be worth the telephone call.

Sandie Norton

Proud m/o Jennifer, age 24

Diagnosed with Anaplastic Astrocytoma, grade 3 in July 99.
Surgery with Gliadel wafers in Jul 99.
Completed stereotactic radiation in Oct 99.
Two new tumors found on left occipital lobe in Oct 00.
Completed 12 Rounds of Temodar. Tumors found in and abutting the left lateral ventricle in Dec 01.
Completed 7 rounds of CPT-11/Cisplatin. New tumors found in several
new locations in Jun 02.
Diagnosed with Gliomatosis Cerebri in Aug 02.
Completed one session of the intra-arterial chemotherapy in Aug 02.
Entered Hospice Facility on 29 Aug 02. Received her Angel Wings on 30 Sept 02.