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Mom suffered with Alzheimer's for over five years. Initially, we'd joke with her about always losing her keys or leaving her purse at gas stations and restaurants. We would get frustrated with her for repeating herself; saying, "Mom, you just told me that!" It was when we found her Post-It Notes that she would use around the house to remind herself to complete basic daily tasks that we knew. Mom wasn't just showing signs of aging, something was progressing and she needed help. She reluctantly agreed to see a doctor, whom she quickly labeled as the "Crazy" doctor. She became convinced we all just wanted her institutionalized.
Our once very involved and active Mom became reserved in groups of people, fearful to embarrass herself or lose her way. An avid card player, it was so difficult when she could no longer remember how to play her favorite games, Bridge and Canasta, eventually Goldfish and even how to hold the cards were not worth the frustration she'd feel. Understandably, Mom was often frustrated and angry with those who attempted to help. She was losing her self-reliance and ability to care for herself. During the "good times," she'd cry in remorse thinking she was becoming a burden. Nothing we could say would convince her otherwise. She was a proud woman and fought so hard to not lose herself to this horrific progression into feelings of detachment, aloneness and paranoia. But in those moments of connection, a smile, a name she'd call out, a squeeze of her hand gave hope she was somehow still there.
Eventually, as she'd allow, we'd help her bathe and curl her hair. Our always perfectly manicured Mom became disheveled and unkept. She was changing before our eyes into another personality, someone we didn't know, someone who didn't remember shared memories, someone who needed us but literally no longer liked us.
They call it the Long Goodbye. Every week you lose a little more of the person you love until that dreadful day when she looks at you and smiles, but no longer knows. The photo books to help her remember no longer bring her back. You can hold her hand but you can no longer hold her attention. Their world internalizes until she could no longer tell her body how to stand, walk, open her hand from a fist, suck from a straw. Her last year she'd often be in another realm, we couldn't reach her or hold her attention. She'd speak but her words were garbled. If only she could communicate what she was experiencing and who she was with.
The tears would flow every time we'd leave because the Mom we once told everything could no longer reciprocate or respond. The guilt we harbored for not knowing what more to do for her. The anger we felt for the unfairness of her misery. The prayers of pleading for her peace and to see her whole again.
This disease doesn't attack the person, it attacks the family. There must be advanced efforts to save others. Please give.