The strokes that damaged my mother’s mental capabilities left her physically intact. Her doctors and therapists never told my parents that she would fully recover, but my parents chose to believe that with a time of rest, life could return to normal.

She was a bit wobbly, her voice gravelly. My father absorbed her household responsibilities and went back to his normal activities. Vascular dementia had changed their lives, but had not stopped them. She fell off a chair while alone, re-injured an old back problem. Living hours away, my brother and I were not immediately helpful in each crisis.

With experience in hiring day care providers, nannies, and housecleaners, I inserted myself in my parents’ situation. I’ll admit I was long on solutions and short on empathy. My father was capable of making decisions and determined to keep their life intact. I heard his refusal to make changes as his denial of reality, not his emotional pain.

Dementia changed her needs frequently. She would plateau for months then slip. Physical deterioration became part of the equation. My parents lived in six places in eight years as my father searched for the magic solution. Their journey looked this:

Adult day care during the early days gave my father time off, but frightened my mother. Clients were clustered by broad needs. There were wanderers and moaners in her group while she was fairly lucid. Crafts and current events discussions were important to her so she put up with the scary time. One day she was attacked and never went back.

Volunteers were great for short spells, but my mother became anxious around strangers. She sometimes locked herself in the bathroom until my dad came home.

Family was always preferred. They sold their home and moved into a seniors’ apartment building near my brother. As the dementia deepened, she began exhibiting unpredictable violent behavior. When my father was hospitalized I came to stay with her. On the third night she threw a plate of food at my face, cut my sweater sleeve with a knife, kicked me in the chest as I untied her shoes. We had to hire a nurse to stay with her who could also administer medications.

My father wanted to be back in their hometown. He bought a condo and hired home care providers. These wonderful women gave my parents great peace of mind. While very expensive, this provided our most peaceful year. When my brother died, a handful of these people helped keep both of my parents healthy and safe.

Neither of my parents did well during the time she stayed in a nursing home following another surgery for my father. She was left on her own, frequently missed meals and sat alone in the lobby. He brought her home and added extra shifts of home care providers.

When her condition deteriorated, they both moved into a memory care facility. The security of locked doors and routines comforted her, but she never connected with the often-changing caregivers. For my competent father, that year was difficult.

Hearing my friends’ stories, there are no road maps to smooth out the journey of caring for loved ones with dementia or Alzheimer’s. Our family had financial resources that made some segments easier than others, but we all shared in the stress. All of us also shared in some form of loneliness caused by the disease. That will be the topic of my next blog.