Alzheimers disease · compassion · death and dying · dementia · emotional suffering · emotions · family · health · love · mental health · mental suffering · neurobiology · psychology · relationship

Love remains…

When Alzheimer’s disease progresses—annihilating ability to word-find, understand language, and speak cogently to loved ones—what remains is affect; particularly affection. In the early stages, this disease has periods where sufferers exhibit highly reactive emotions that often present as angry, nonsensical or delusional. These periods are particularly hard on close relations and caregivers.

One very difficult experience I recall happened eight years ago in a favorite Upper East Side restaurant. Mom and I were dining and suddenly her neighbor came up to the table to say hi. Startled that she didn’t recognize him, Mom launched into a hysterical rant about how I was planning to kill her. Increasing agitation caused her to suddenly get up and leave the restaurant. I ran after her knowing she would never calm down if I caught up with her. So instead I followed her as she wandered the streets agitated and lost; finally ending up at her building. From across the street I saw her smiling and talking with the doorman. When I entered the lobby she sneered at me. Then let me accompany her up the elevator and into her apartment. She never spoke of what happened in the restaurant. Just as she never admitted to having Alzheimer’s, even through the five years she spent living in a Memory Care facility.

Four months ago her deteriorated physical condition required a transfer to a medical model nursing care unit for memory patients. Though it is considered the best unit of its kind, it is nothing like the family-oriented, loving memory care environment she thrived in. She no longer eats and sleeps most of the time. Mom is making it clear: I am ready to bring this horrible last 10 years of my life to a close.

For the last four years Mom has not known who I am. Yet, when I arrive, though she cannot speak much, she immediately brightens in her affect. The love is palpable. She laughs when I make jokes. I can’t tell if she understands anything I say, but her eyes display interest as I relay the goings-on of my life. I hold her hand when she lets me. Play Beatles songs she and my Dad adored. If she gets agitated I stand behind her wheelchair holding her shoulders gently to restore parasympathetic response.

These days it is especially hard to leave at the end of a visit, knowing it may be the last time I see her alive. Sadness pervades the field between us. We stand together in the awful knowing that she, a highly intelligent and deeply caring woman, has been utterly decimated by Alzheimer’s. And even so, our mutual love remains… triumphing spectacularly over this dread disease like a victorious army refusing to lose its most precious treasure.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s