Alzheimer’s: The Disease of the Unknown – Visiting Mom in Memory Care

Transcript of Video: “Alzheimer’s is the Disease of the Unknown”

Mike Barnes: I thought it was going to be the worst day ever. March the 8th of 2021, just five months ago, we were finally going to move my mom into memory care. This was no overnight decision; it had been in the process for a couple of years. It was about two years ago when my sister and I broached the subject with my dad and said because of mom’s Alzheimer’s getting worse, we need to move her into memory care. But you have to be behind it; you have to support it because if you don’t want it to happen, it will never work.

Well, finally, in October this past year, 2020, we thought we were going to do it. Dad put the halt on things. He stopped things. He said, “Whoa, whoa, let’s wait. Let’s wait till after the holidays, after Thanksgiving, after Christmas, because that means so much to your mom.” So we said okay because, again, he had to be behind it.

February the 8th, it was all set. Everything was signed, sealed, and delivered. We knew we were going to do it. Three days before, my dad calls me and says, “I’m making an executive decision. I’m putting a stop to things.” He says he wants to wait until after mom’s birthday, February 22nd, after their anniversary, February the 27th. So I said okay. So we rescheduled for March the 8th.

I drive up to the Dallas area. I meet my sister at my mom and dad’s independent living place where they live in an apartment with meals on the first floor. We take my mom; we said Dad should stay there, he should not be involved in the move. So we take my mom the mile and a half to the memory care place. There are four or five red lights along the way; it’s about a five-minute drive. In that five minutes, it’s a case of:

“Where are we going?” “Well, Mom, your doctor is worried about you and Dad, and she wants you to look at this place and try it out and see what you think and see if this is going to help you.” “What’s wrong with your dad?” “Well, Mom, he had COVID back in January. Remember he was in the hospital for three days?” “He was? I hope he’s okay.” “Where are we going?”

It was a loop. My mom gets on loops, and we went through that loop four or five times in that five-minute drive. We finally get to the memory care place a mile and a half away. We go in the front door that was open, then we’re in the lobby, and the next door is locked because of COVID. We have to ring a doorbell, and they know we’re coming. We don’t know what to expect. Two ladies come, and they open the door. One says, “Hello,” and I say, “I’m Mike Barnes. This is my sister, Diane, and that’s our mom, Jane.” The other lady says, “You are so beautiful.” And my mom’s eyes just lit up; she had this big smile. The lady said, “Come with me,” and they walked off, and my mom never looked back.

It wasn’t as bad as we thought. Alzheimer’s is the disease of the unknown. My sister and I looked at each other like we didn’t expect this. And we don’t know what to expect anytime we visit, anytime my dad visits because sometimes my mom’s in a good mood, sometimes my mom’s in a bad mood, and you never know what to expect.

Two weeks ago, my dad visits, and he calls me afterwards and says, “That was the worst visit I’ve ever had. She was mad the entire time. For 45 minutes, she was mad. She was saying, ‘How come you never visit me? What, do you have a girlfriend or something? Why did you put me here? Why am I in this place? I don’t understand why I can’t go home with you. This doesn’t make sense.'” She was not happy at all. I said, “Dad, you know a lot of this because she doesn’t remember this. She won’t remember this the next day. But you’ve got to accept this; you’ve got to be happy about this. This has to help you as well, and if this bothers you, you’ve got to cut down on how often you go because it’s not going to be good for you.” And he understood that because Alzheimer’s is the disease of the unknown. He doesn’t know what to expect.

But he couldn’t wait. He loves my mom. They’ve been married for 61 years, and he goes back two days later, and he calls me afterwards and says, “This was the best visit we’ve had in the entire time she’s been here. It was great. She never got mad about anything. We talked about the old days. Something came up about how much we traveled.” And she said, “Where all did we go?” And we talked about traveling to Milwaukee and Chicago and Los Angeles and Nassau and to Hong Kong and Tokyo and all over the country and all over the world. She didn’t remember any of that, but she remembered that they traveled. And she didn’t remember a lot about family, but she remembered that she had one. She asked about her kids; she asked about her grandkids, and my dad reminded her. She said, “Wow, we’ve lived a great life, haven’t we?”

Alzheimer’s is the disease of the unknown, and you never know what to expect with anyone that when you visit them, what are they going to remember, what are they going to forget. My mom got mad visiting with my sister earlier this week because my dad hadn’t visited in three months, she said. My sister’s like, “He visited two days ago.” She just doesn’t remember.

It’s so, so hard because so many bad things come up. But what’s the old saying? You’ve got to take the bad with the good, especially with Alzheimer’s. Because Alzheimer’s is the disease of the unknown. Find the good things. Find the good things that you can celebrate. Find the good things that you can help them remember or think they remember or think they can have the same feeling about, like my mom and traveling, like my mom and her family. Find the good things because you know what? Sometimes the worst day ever and the best day ever may be all in the same day because Alzheimer’s is a disease of the unknown.

*This transcript is auto-generated. Please excuse any typos or mistakes.