In May 2016, after the hubbub of Mother’s Day had passed, I sat down to write a short reflection on what Mother’s Day felt like from my perspective: a daughter who is slowly losing her mother. Mom had come to visit last May at a time when my mother-in-law was also present, and the contrast between the two women was striking. My mom struggled to keep up with conversations that my mother-in-law, who is not in the throes of Alzheimer’s, could easily maintain. It was clear, with both women in the room, just how far gone my mother already was. I remember thinking that I wasn’t quite sure what another year would bring.
And I haven’t written much about Mom’s decline in the year since then, with the exception of what’s happening with respect to phone calls. It’s difficult to call and speak to my mother. She absolutely cannot find the proper words to answer a question, and it’s like a guessing game when I speak to her.
Me: How are you?
Mom: It’s all good . . . yes.
Me: What are you doing today?
Mom: Well . . . I think we’ll . . . you know, we need to go . . . your Dad said . . .
No, I don’t know what my dad said and if I press further, sometimes Mom will just give him the phone or inform me that he’s not home. On days like that, when Dad’s not there to take over the stilted conversation, Mom will give in and end the conversation with a huge sigh. Other times, she will miraculously be able to find these words, “I cannot find the words I’m looking for.” At times like that, I’m happy for her: she can vent her rage, at least a little, and she has made herself clear to me. I can validate her feelings, and sympathize with her, but other than telling her that I understand and I can call back later, there’s nothing I can do, especially from four hours away.
I wasn’t with Mom this year at Mother’s Day. And when I called to wish her a good day, she simply said “Okay. Yeah. Yes.” Clearly she didn’t understand the reason for my call and it wasn’t until my Dad shouted, “Happy Mother’s Day to you,” that Mom piped in, “Oh yes, to you, too.” Like my Dad’s reminder prodded her mind to form the words proper etiquette dictated.
I didn’t take offense, and truthfully, I didn’t feel sad, either. I’m a realist and a scientist. I know what’s down the pike and my mom’s trajectory, so far, is just as a textbook might describe. I’m no clinician, but if I look at the stages of Alzheimer’s, and compare them to what Mom is experiencing, she’s probably sitting right in the middle of Stage 5: she’s often confused, probably doesn’t know her phone number or address, but can still dress independently. With seven total stages, we have two more to go.
What does that mean for Mom? Well, we’re two years past a diagnosis, and according to Alzheimers.net,
On average, people age 65 and over survive four to eight years after Alzheimer’s diagnosis. However, some live for as many as 20 years. The bulk of that time (around 40%) will be spent in the most severe Alzheimer’s stage.
That means that the next couple of years will be very telling, to say the least, and the most arduous part of the journey is yet to come.
I’m not sure I can prepare for that future in any way, but I can prepare to assess and document the changes I see in Mom, especially on a yearly basis. So what began as a simple reflection on my part has morphed, in my eyes, into a series of posts. Next year around this time, expect installment number three. I’m not sure what that short reflection will actually reflect, but I’m pretty sure the news won’t be positive.
In the meantime, I’ll go call Mom and try again to reach her.