The following is an excerpt from A Caregiver’s Guide to Lewy Body Dementia, by Helen Buell Whitworth and James Whitworth.
Karl’s LBD has been gradually getting worse over the last 4 years, but I thought I was managing—barely. I had my groceries and even our medicines delivered. The only time I’d get out of the house was to take Karl to a doctor’s appointment. I knew I wasn’t taking very good care of myself, but there just didn’t seem to be enough time or energy left for me once I’d done everything I needed to do for Karl. Then I fell, and everything changed. I have diabetes, and I guess I let my blood sugar get too high, and I fainted. I crawled over to the phone and called 911. I didn’t know who else to call. I don’t have any friends anymore, what with not being able to leave Karl alone and him getting so obnoxious when I have visitors—I guess he’s jealous. Anyway, the paramedics took us both to the hospital. The doctor said I’d have to stay until my diabetes was stabilized, and they kept Karl overnight. I called my daughter, Janey. She flew in and took Karl back to our house and stayed with him until I could come home. But she has a job and a family, so she couldn’t stay long. Before she left, she did arrange for a caregiver to come in three times a week to help me with Karl. I should have done that a long time ago.
Paula’s story is a good example of how not to take care of your loved one. She was so intent on taking care of her husband that she did not take care of her own health. She did not take any time for herself. She let her friendships lapse and was not even going out for groceries, let alone church or other personal activities. She was trying to do an around-the-clock job without help, and it was wearing her out. Finally, her body rebelled.
When we fly, the flight attendant warns us if the plane loses pressure, we need to put on our air mask before we help anyone else. The heart pumps blood to itself before it pumps blood to the rest of the body. Likewise, caregivers must be just as diligent about taking care of themselves so that they can care for their loved ones. This includes maintaining good emotional and spiritual health so that they can provide a calm environment for their loved ones. If a caregiver is distressed in any way—sick, tired, frustrated, whatever—her loved one will reflect that with acting-out behavior that will likely distress her—and him—even more.