The following is a dialogue that I had with Mom recently. It was totally unexpected as most things are with this disease; however, I feel it warrants writing about because I’m sure many of you have had the same conversation or will have, and it might help you to clarify, once again, that NOTHING with this disease is ever expected, or can be counted on, or be anywhere close to being “normal.”
My phone rang at 5 a.m. the other morning. I missed picking it up because I could not find the darned thing. I had received a robocall at 1:08 a.m. and in total frustration, I had tossed the phone on the floor not caring where it landed at that ungodly hour. I gave up the luxury of turning off the ringer during the night years ago because of Mom.
When I finally located my phone, I saw that it was Mom who had called. I thought, “At 5 a.m.? This can’t be good,” and I called her right back.
“Hi, hun. I’m confused,” Mom says, “Where am I?”
Gently I say, “You’re at your home, only about 10 minutes away from me.”
“Where is that?” she asks. “Why don’t I know where I am?”
“It’s this stupid disease, Mom. It’s okay. Sometimes you get confused and don’t know where you are.”
She pauses trying to process this “new” information, then says, “Why don’t I know where I am?”
I answer her inquiry gently and exactly the same as I did a second ago. I could hear her sigh. “It’s okay, Mom, you’re fine.”
“I don’t know what’s going on with me. Why is this happening?”
“It’s the disease, Mom, it’s okay.”
“What disease do I have?”
“Alzheimer’s,” I say calmly, not knowing how she will respond to this.
“Oh.” Then a long pause on her end.
Finally, she says, “Really? That’s not good. How long have I had this?”
“Well, glad you’re lying down because you’ve been a pain in my ass for about 12 years now.”
This, at least, gets a giggle out of her.
Again, another long pause.
She then says rather uneasily, “That’s awful.”
Again, another pause.
She then says more as a statement rather than a question: “Really? I have Alzheimer’s. . . When did this happen?”
I did not answer that question again, instead, I said encouragingly, “Hey at least you had the presence of mind to pick up the phone and call me. That’s really good, Mom. I will come by and bring a sign to put up in your apartment, so you know where you are,” I said. “We have the same signs at my house and at the cabin, so you know you are safe and with me and the dogs.”
“I have a sign here,” she says. “It says, “Vic: 787-****, and Vic Cell: 58*-****.”
“Yes, that helps because you do call me. But I’ll bring by another sign that helps you know better where you are.”
I could hear her sigh and begin to cry. I immediately tell her, “It’s okay, Mom, you are okay. I’m right here. Let’s go back to sleep for a few more hours and then it’s breakfast time.”
“Do they feed me here?” She asks.
“Do they ever,” I say. “You live in a 5-star hotel, you lucky girl! They take care of everything. You get 3 squares a day and cellmates -- I mean table mates that are your good friends.”
I hear her giggle again.
By this time, I know it is time to try and end the call. “It’s still early, Mom, and dark outside. Why don’t we go back to sleep? I’m sure when you wake up at your usual time for breakfast, you won’t be so confused. You’ll be okay. Let’s go back to sleep.”
“I’m confused,” she says yet again.
Then she suddenly says, “Oh, they feed me here?” as if that had just registered.
At this point, I really know it is time to end the call. “Let’s go back to sleep. When you wake up, you’ll recognize things. Let’s go back to sleep, I’m really pooped, and I don’t want to get up quite yet. Let’s go back to sleep.”
“Okay.” Another long pause. I knew she was still trying to process our conversation, so I interrupt her thoughts and probably her next question and gently say, “When we wake up later, you’ll feel much better. I’ll see you in a little while, okay?”
“Okay,” she says.
“Good night, Mom, just sleep now.”
We hang up. “Well, I guess this is where we are at now,” I say to myself, and get up for the day.
What Is True For Me
I do not know what, “I guess this is where we are at now,” means at all, except I am back to being at the mercy of The Big Whatever with this disease with Mom going through yet another decline.
I have had this conversation a lot with Mom lately. Before the one cited above, the most recent was 9 o’clock the previous night. She had not woken up from a deep sleep as she had with the above phone conversation. She had been watching TV and was going to bed. However, there were the same questions and the same confusion occurring.
Whatever these latest episodes mean, they will be dealt with even though I do not have the answers. However, I do not need the answers because I have come to understand that dementia is about total surrender. Dementia shows me that even as Mom declines, my love for her does not. That Love stays protected and safe in my heart. That will never change, even though Mom is.