Committed caregivers make the dementia experience tolerable, and tolerable is about the best we can feel as we live through this terrible disease.
My husband and I are caregivers to his mother, but we also have strong, warm, and compassionate caregivers who spend much of the day with her. These women are making our experience easier, and we are fortunate to work with them. They see mother as a whole person, and they understand that her behavior is a symptom of the disease. None of them confuse the two.
Mother’s caregivers know that she is frightened, but also that we, the adult children, are increasingly devastated and exhausted. They also seem to have an intrinsic understanding of how we are sometimes buckling under the pressure and complexity of coordinating our daily lives just now.
The people who help with mother’s care understand that they cannot stop the progression of the disease, but that they can do small things to make the patient, our parent, feel more comfortable and less helpless. The four women who spend long hours with mother, as well as the amazing assisted living staff members — men and women — understand her pride and her need to have at least some control on the smallest of issues. These seemingly trivial issues are what Mother has left to control, and her caregivers understands this.
We feel fortunate to have these people helping us, and more importantly, we are lucky to have come to know them.
- The Family Caregiver Alliance
- National Institute of Aging Caregiver’s Guide
- National Alliance for Caregiving
- Caregivers’ Resources
- National Caregivers’ Library (Choose your state and region and the site takes you to a range or resources.)