My mother has Alzheimer’s disease; she is in about stage 6 (of 7), from what I can tell. She also suffers from spinal stenosis which has limited her ability to stand and walk, so she’s wheelchair bound, as well. The last few years have been Hell, especially on my father as he’s not only been her spouse of 60-plus years (they’ll celebrate their 65th anniversary this upcoming December), but decider, caregiver, and advocate. Until quite recently, my father–himself nearly 88 years old, now–cared for her at home, alone, including feeding and bathing and bathrooming, as well as taking care of house cleaning, gardening, mowing, snow removal, shopping, bills, and all the tasks that life necessitates. While she’s spent short periods of time in various nursing home facilities, she’s been home, with Dad, until January of this year, when he finally placed her permanently in a Memory Care unit.
Then, he promptly got sick himself and nearly died. Twice.
Dad’s on the road to recovery from kidney and heart failure, but he’ll likely not regain all of what he was before his illnesses in February; he lost forty pounds, first of all, and didn’t have that much to spare to begin with. He’s gained a few back and we hope to help–with Justin’s cooking–in his gaining twenty pounds more back (his goal) after we all move in together this summer.
I bring this up because today, Justin and I were in my parents’ town to celebrate Father’s Day. Dad had gone to “break Mom out” of the home for dinner, so we all went out then returned to their home so Justin could help move some boxes (my father’s far more along on packing than we are, to no one’s surprise, despite his having had eye surgery only days ago, the use of only one arm, and being shaky while walking with a cane). I sat with Mom while Dad directed Justin and the handcart.
And I was totally unprepared for my response to Mom’s current stage of dementia.
Alzheimer’s, I’m finding, not only transitions with very blurry edges in the patient, but tends to sneak up and surprise the Hell out of the family members, as well. I’ve visited with Mom, in person, at least weekly for months now, so it’s not like there’s been a lot of time elapsed. I just was at her place on Thursday, four days ago. But today, sitting with her in their Den, despite the fact that she was in a terrific mood and happy and laughing (and had been flirting with the waiter, in Norwegian), broke my heart.
My mother, the wordsmith, the woman who’s never been quiet more than two minutes in her whole life, the veteran teacher who taught grade school for forty years, who’s read and promoted quality language use her whole life, no longer has the ability to use the right words.
I’ve noticed this before, mind you; here and there. It frustrates her, but I’ve always been able to understand what she was trying to say. Often, she’s incorporated a word or concept spoken behind her (or on TV) into her own communication, but it’s been easy enough to follow.
Not today. Today was an entirely different beast. A very ugly one.
She was speaking in word salad. Grammatically correct (as always, bless her heart); using the right parts of speech, correct syntax. But none of the words meant anything that she wanted to say. Worse, when she’d ask one of us a question and wait for an answer, and none of us had the first clue what she was asking. It was as if she were randomly selecting words from pages in a dictionary, without any tangible connection to her thoughts that I could discern.
I turned off the TV, hoping that would help. No. I sought to find patterns in initial letters, or concepts, or images, but could find none. Her brain seemed to simply be supplying words chosen by a roll of the dice. And she had no control, and worse–she realized she had no control.
She attempted to maintain her sense of humor, and to keep communicating, but I was horribly frustrated and–to my own shame–embarrassed. Not of her, exactly, but of the whole situation. Damned mad, which I process by becoming overly anxious and short. More than once, I left the room to find something to do to get away from the incomprehensible communications, and then I felt bad for doing that.
Next time, I hope to be more prepared for this. I hope to find a way to communicate with words even when the words haven’t any meaning. She could understand us just fine, which is helpful, but I can’t imagine being my mother, being the woman I’ve known, without being able to verbally express my thoughts. What a horrible, cruel, worthless shitty joke to play on her.
I hate Alzheimer’s more than ever, today. Hate it. Hate it more than cancer, waaaaay more than fibromyalgia or Hashimoto’s disease, more than anything.
Alzheimer’s has just robbed my mother of her greatest joy.