LEEZA: I grew up in South Carolina — with my mom and dad, my brother and sister — and when I look back on pictures and memories of those days, I realize — wow, I was a very lucky girl. It was a pretty idyllic childhood, really. Our family was always very close. And even when my mother was diagnosed with Alzheimer's disease, and we were hit with this tsunami of pain, we remained very close. Course, like all families, we had tough days and good days, but we managed to lift each other up and help each other stay strong. And that's what this is all about; it's our Conversations in Caregiving. And for the first time ever, we have gotten the entire extended family together here in South Carolina. And I hope that some of what we've learned along the way will be helpful to those of you who are on this path wherever you are in the journey. It's important that we all remember: we're not alone. So you'll meet my dad, we call him Pops, my brother Carlos, my sister Cammy, and my sister—in—law Anne—Marie. Welcome to the Gibbons family — Conversations in Caregiving.
LEEZA: I thought a lot today, knowing that we were going to get together and talk, that I really think this moment would make mom very happy.
CARLOS JR: And proud.
LEEZA: And proud.
CARLOS SR: She was the most energetic lady that you could imagine, and when I first met her I knew that I needed someone like her to guide me in life because I knew nothing. And she had so much outgoing personality, and so she just captivated me from the first.
LEEZA: She kept you in line, didn't she?
CARLOS SR: She surely did!
LEEZA: Seeing Mom go from being this social, vivacious, strong person, seeing the Alzheimer's come in and cloud all of that and steal that bit by bit. Let's go back to when we actually got that diagnosis. Because Mom knew. Mom knew —
CARLOS JR: I think intuitively, we knew. You know, there were just too many signs we just didn't want to face it, and still don't want to face it.
CAMMY: I don't know why it didn't dawn on me. We went through every possible thing that it could be but that.
LEEZA: That's what's so funny when you look at our situation. Granny had the disease. Mom was the caregiver for her mom. And yet when it came Mom's time to face it, we just wouldn't even think of it.
CARLOS SR: I think one of the most hard blows I had to take was when we took her over to have her diagnosed, and when the examiner was giving her the little cognitive test, you know, I believe there were 30 questions on the test, and little simple questions, and they said if she answers 20 of the 30 right then that would, she would just be marginal in terms of having memory loss. Well, when I found out that she only got about 12 or 13 right out of 30 questions I couldn't believe it. One of the questions I will always remember, they asked her to draw a clock and put the hands at 3:00, and she couldn't do it. I'm sorry.
LEEZA: And you couldn't help her. She was looking to you.
CARLOS SR: I couldn't do a thing to help.
CARLOS JR: I think there may be a tendency not to ask those doctors those hard questions, and to have the doctor spend the time to hear more what you're seeing and what you're observing about the patient so they can better help identify it and ultimately treat it.
LEEZA: Anne Marie really has always been the one that has taken the lead with the doctors. You have, and you've been the one that has pushed us to say, "Why don't you try this?" and "Maybe you should think about that."
ANNE MARIE: I could do that. I don't know that I could do that with my mother, but I could do that with JG because I wasn't her child... young child.
LEEZA: I think that when you look at the way we all took on different responsibilities, it's one thing that I wish other families could see early on. Carl had the legal knowledge and, you know, he's the oldest and he's the brother and, you know, we knew that he was going to be there. Cammy uprooted your life. I mean, you changed so much in your life. You showed up for duty. Moving in with our parents...
CAMMY: We helped each other.
LEEZA: I know we all feel that we learned some things that we wish we'd known before we got this new reality check. I wish I had known that it was going to be this much of a marathon, because I expended so much energy early on in ways that I wouldn't have done now. I would've slowed down. I would've accepted earlier, and I would've tried to be more present earlier...
CARLOS SR: You cannot beat patience and fortitude with this disease. And I would recommend that any caregiver dealing with a loved one suffering, to reinforce their patience and fortitude, and to accept all behavior as being unrelated to the real person but related to the disease, that would be my advice to caregivers.
CARLOS JR: The thing that I wish I had known was how little time of the real mom we had left, how short she was going to be still herself, because you'd have dropped everything to be there. You'd have changed every plan to just be there for that little short period of time. And I guess with each patient it's different. You know, some it's a longer period, some it's even shorter than we had with Mom. But that's what I really wish I had known is how little time there was to still have Mom —
LEEZA: And appreciate —
CARLOS JR: and appreciate it.
CAMMY: You know what I wish? I had recorded her voice more.
LEEZA: Oh, yes!
CAMMY: I miss her voice, and all I have is that tape and now it's so worn out I can't hear it.
LEEZA: Thank you for watching, I hope some of what we've shared resonated with you and will offer you strength and support along your caregiver journey. As you explore through alzheimersdisease.com you'll find our other Conversations in Caregiving and lots of other support, so I hope you'll take some time to do that. And remember: we're in this together, so stay strong.