Caregiver Information

Terry Stephens: A Caregiver's Story

Five years ago, I became a caregiver for my husband after he suffered the removal of a meningioma (tumor) that had been growing for 15 to 20 years and a subdural hematoma. Sadly, he then developed Alzheimer's disease. In 2006, an aortic valve replacement procedure caused an even greater decline in his memory. He is now between the 2nd and 3rd stage of Alzheimer's. I have been a caregiver for much of my life. Prior to my husband's illness, I cared for my brother who had been diagnosed with cancer. I conduct all of the activities associated with daily living for my husband. This includes trips to the doctor and taking care of other necessary appointments. I also teach five hours a day, so I must pay out of my own pocket for a sitter while working. Unfortunately, we did not plan ahead adequately prior to my husband's illness, so we do not have long term care insurance.

My life has completely changed since I started caring for my husband. My respite is very minimal and I can't take time for myself. My family helps care for my husband when needed and I also pay friends to attend to his needs. However, I would benefit from having more assistance with direct care for my husband so that I can take a break from time to time.

My biggest frustration as a caregiver is not being able to have a break for myself through the more frequent use of a sitter. Sitters are not covered under our insurance. I find resources on caregiving from the Alzheimer's Association Web site and also conduct research on my own as part of my graduate school project. I commend CMS in providing information for caregivers and I feel that the new Web site can be an important and useful resource. CMS can assist families by helping them become more informed about taking care of their loved ones.