Elizabeth from Indiana

My mother Jean, a retired registered nurse, began living with me in 2004 as the onset of dementia became apparent to us. She is now 89 years old and suffers from stage 6 dementia in addition to several other debilitating conditions that require intermediate nursing facility level care. She needs frequent supervision and assistance with all daily living activities including walking, eating, and hygiene/incontinence care. The Medicaid Aged and Disabled Waiver program allows me to earn a small income while I continue looking after her at home, with occasional caregiver respite stays at a facility. The waiver also provides for a CNA visit twice weekly to assist with bathing and light housework.

As mom's condition continues to deteriorate, we anticipate the need for hospice care to augment our current arrangement. There is simply a limit to what any one person can do, and one lesson I've learned during 13 years of attending my mom is to recognize my limits and be willing to accept help when I need it. It's difficult to watch a loved one's health inevitably decline, yet I'm grateful for the assistance that allows me to keep my promise to take care of Mom for as long as possible.

The hardest part of this journey has been frustration with family members and health care providers who took far longer than I did to acknowledge the extent of Mom's dementia. This caused years of delay in receiving the treatment and assistance we needed. My advice to any caregiver in a similar situation is to trust your perceptions and fiercely advocate for your loved one and yourself. Help is available, but it's often difficult to locate the resources you may need. Be persistent, and remember to make self care a priority even when it means leaving some tasks undone.