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Caregiving Through Alzheimer's Disease (Transcripts)
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[Narrator] Behind every heartbeat is a story we can learn from. As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. "Second Opinion" is funded by Blue Cross Blue Shield.


[Announcer] "Second Opinion" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.


[ Applause ]


[Dr. Peter Salgo] Welcome to "Second Opinion," where each week, a panel of medical experts discuss a real-life case. I'm your host, Dr. Peter Salgo, and I want to thank everybody for being here today.

Today, we're going to be breaking our format a little bit. We're joined by three women, and they'll be sharing their personal stories. All three of them have a job that is one of the most important jobs there is. They're all caregivers, specifically care givers to a loved one with Alzheimer's disease. Pam Yates, Sybil Ishman,and Gina Mikolon. Again, thank you for joining us today. This isn't an easy topic to discuss. And today, they are joined by Dr. Olivio Clay from the University of Alabama in Birmingham. So, why don't we get right down to it? What I'd like each of you folks to do is give me a little background, tell me a little bit about your loved one before this disease began to manifest itself. So, why don't we start with Gina, and we'll just go around. Tell me about your mom.


[Gina] My mom Harriet is 92 years old. She was very active as a businesswoman, as a receptionist, a secretary. She worked for the telephone company. Wonderful wife and mother and, um, best friend.


[Dr. Peter Salgo] Sybil, tell me about your sister.


[Sybil] My sister is in her early 70s and, prior to Alzheimer's, she was a registered pharmacist and Director of Outpatient Pharmacy at Duke University Hospital in Durham, North Carolina. She developed two patents. A brilliant woman, worked on many community and volunteer activities. In fact, she was one of the primary pharmacists who volunteered to go when there was Hurricane Katrina to try to connect people who were displaced with their medications.


[Dr. Peter Salgo] Pam.


[Pam] Well, my husband Brock was a journalist, a screenwriter, an author. Lived and died by his mind, and we worked together. We were partners in all things. He was a brilliant man, very humble, but willful, and you knew his opinion on most things. But he said to me, "You know, Pammy, I'm very lucky I'm a writer, and I never have to retire because I can use my mind."


[Dr. Peter Salgo] Now, he was responsible for at least two screenplays, right?


[Pam] Yes.


[Dr. Peter Salgo "Cannonball Run" and...


[Pam] "Smokey and the Bandit II."


[Dr. Peter Salgo] Okay.


[Pam] Yes.


[Dr. Peter Salgo] What's it like to hear the diagnosis of Alzheimer's in someone that you love?


[Gina] It was very difficult. I think we first noticed it when my mom was going straight down the road to Southtown Plaza, got there okay, but couldn't find her way back, and she stopped and asked someone for help, and they called me, and we had her taken in, and the diagnosis was Alzheimer's, and it was very, very shocking.


[Dr. Peter Salgo] What about you, Sybil?


[Sybil] Well, my sister was always a Type A and a very forceful personality. So, initially, we thought, "Well, that's just Gale." Then I began to notice that she would repeat, tell me the same things over again in a manner in which it was clear to me that she did not know she had told me before.


[Dr. Peter Salgo] Mm-hmm.


[Sybil] Then since she was living in North Carolina, I'd visit very often. I noticed once when she was taking me back to the airport that she couldn't figure her way to the airport, and I thought, "Well, maybe she's just overtaxed."


[Dr. Peter Salgo] That was Alzheimer's.


[Sybil] That was Alzheimer's.


[Dr. Peter Salgo] That must have been frightening.


[Sybil] It was very frightening. Very frightening.


[Dr. Peter Salgo] Pam.


[Pam] It was totally different for us. Brock was never ill. He was very blessed with good health, and he went into almost 2 years of depression, and he would always say, "Pammy, I've got this headache," a frontal-lobe headache, and we couldn't feature what was going on with him because he seemed to be normal in every other respect, but it started in just a random way. And he really wasn't diagnosed for probably 2 1/2, 3 years.


[Dr. Peter Salgo] Olivio, does this all make sense to you? Does it sound familiar to you?


[Dr. Olivio] It really does. As caregivers, it's very important that we look for subtle changes in our loved ones, changes in mood, changes in memory, changes in repeating things. No longer being interested in hobbies that they were interested in before. So being aware of these subtle changes are very important. If it's probable Alzheimer's Disease, then you really need to prepare yourself as a caregiver for the road ahead.


[Dr. Peter Salgo] What is the trajectory of this disease?


[Dr. Olivio] Okay, so we've been talking about the early stages where we've noticed subtle changes. So we have to remember that an individual probably has Alzheimer's for a couple of years before we actually start seeing these changes. So we see Stage 1, where we have individuals that don't have any symptoms at all, and then we get farther into the early stages where we start identify these small, subtle changes.


[Dr. Peter Salgo] Now, when we talk about this disease, I really want to focus not on the person with the disease, but this tremendous burden on the caregiver.


[Dr. Olivio] Definitely.


[Dr. Peter Salgo] What is the face of a caregiver?


[Dr. Olivo] Your typical caregiver -- We know that 2/3 of caregivers are women. We know that it varies base upon racial and ethnic background, where we see -- Typically, in majority groups, we see the spouse being the caregiver, whereas in different minorities, we see adult children more likely to take on that caregiving roll. And it's normally the person in the family that's more responsible, actually might be taking care of some of their affairs already for that individual. So those are our probable caregivers.


[Dr. Peter Salgo] Now, Sybil, you're here, and your sister is not here. She lives down South.


[Sybil] That's correct.


[Dr. Peter Salgo] So that's a challenge.


[Sybil] Yes.


[Dr. Peter Salgo] How do you manage that?


[Sybil] Well, first of all, I have to qualify that I am a secondary caregiver to my sister.


[Dr. Peter Salgo] Okay.


[Sybil] But then I also want to say that I have no other siblings. It was just my sister and myself growing up. So I'm very close to her. Our parents have passed away, and so she's it. I'm very fortunate I'm in a position to be able to fly back and forth to North Carolina, and there have been many a phone call. Even though she's now living in a memory care facility, her husband is still alive, but my sister's husband is more than 10 years older than she is, and he never expected for him to be the primary caregiver. So I'm trying to manage that as well as I can for him.


[Dr. Peter Salgo] Now, your loved ones were closer, but don't all three of you actually share something in these early stages? What were the biggest challenges?


[Pam] The biggest challenge was getting over the word -- Alzheimer's.


[Dr. Peter Salgo] Is that right?


[Pam] Yeah. My son had died of cancer at 27, and my daughter Stacey and I were his nurses, and we were his caregivers. So I learned what advocacy was for. So many of these situations are similar in end-of-life issues, but there are also many differences. But I found that when I heard that the love of my life, my partner, had Alzheimer's, it took me by such surprise, and it took me a long time to get over that word. He never mentioned the word to me, ever, which was stunning. Even in the early stages, it was so repellant to him that he never discussed it.


[Dr. Peter Salgo] Gina, what about you? What was the toughest part in these early stages?


[Gina] The toughest part for me was that I was trying to help my mom from my home to her apartment, which was 3.5 miles away, and I would make phone calls top tell her to get ready, and she'd say she was getting ready, and I'd get there and she wasn't ready. So then I would put her clothes out for her, top to bottom, have them laid out on the couch. Call her up. "Are you getting ready?" "Yes, I am." Get there, and she's in her closet looking for clothes. Or telling her to take her pills, and they were still sitting there. For me, it was very difficult because I was trying my best to help her to be totally independent, and it wasn't working.


[Dr. Peter Salgo] Olivio, what do you see as the big challenges in early Alzheimer's, for the caregivers?


[Dr. Olivio] Right, we talked about some of them -- actually accepting the diagnosis, helping the person with Alzheimer's accept the diagnosis, and for that person with the disease to be willing to accept help. Of course, as much knowledge the caregiver can have about Alzheimer's and the progression, the better they will fare because they know what to expect, and also, it's very important to have a network in individuals that are there to help the caregiver, if possible. It doesn't always have to be family and friends. It can be individuals in social settings such as -- if you're spiritual, it can be individuals in your church or synagogue, but having a network of individuals to help is really important.

[Dr. Peter Salgo] Now, let me just parse this out a little bit, if I might.


[Dr. Olivio] Okay.


[Dr. Peter Salgo] Because there's two kinds of caregivers that I want to talk about here. There are the caregivers, three of whom are sitting here, who are helping the person with the disease, but then there's a second set, and I think you were beginning to allude to that, helping them.


[Dr. Olivio] Correct. Caring for the caregiver, definitely.


[Dr. Peter Salgo] So you've got to find some respite for yourself.


[Dr. Olivio] Definitely.


[Dr. Peter Salgo] Did you women find help, in-home help or visiting help, for your loved one?


[Gina] Well, I am very thankful that our community is chock-full of help. The Alzheimer's Association locally and also LifeSpan, they have wonderful programs. They have caregiver programs for us that we go through, and it basically not only teaches us on how to care for our loved one but how to care for ourselves. So that has been essential.


[Dr. Peter Salgo] Did you find the same thing here?


[Sybil] Well, first of all, my husband and I are very, very active with the Alzheimer's Association, and so we educated ourselves with information about some of the things that we needed to do. And my brother-in-law tried to maintain his wife at home as long as he could for about a year with the help of professional caregivers who came into the house.


[Pam] Stacey and I -- my daughter and I -- had it totally different. We had taken care of -- well, her brother, my son, so we had done the end-of-life heavy lifting before, and we were convinced we could do this. We could do this. And my son died at home in my arms, and without Stacey, I don't know what I would have done, but Brock and I were only children. So, other than Stacey, there was nobody around to help. I became more and more isolated with him, trying to be all things to all people 24/7.


[Dr. Peter Salgo] Uh-huh.


[Pam] And I took care of him 9 years, Stacey and I.


[Dr. Peter Salgo] My goodness.


[Pam] 9 years, 24/7, until we couldn't do it anymore.


[Dr. Peter Salgo] As this disease progresses from the early stages into the middle stages, things get more demanding.


[Dr. Olivio] Definitely.


[Dr. Peter Salgo] What happens?


[Dr. Olivio] That's when we see more of the memory problems. That's when we see the disruptive behaviors. You might see the individual being agitated more. You might actually see the person getting violent in certain instances, wandering away from home, that type of thing. So the person, physically, in most cases is pretty much intact, and so the fact that they're physically intact makes it even hard to deal with these disruptive behaviors.


[Dr. Peter Salgo] I was gonna say, I mean, if they're physically intact and they become combative, that's a real problem.


[Dr. Olivio] Definitely.


[Dr. Peter Salgo] And, in some ways, it sounds to me as if this is worse for the caregivers in their perception of their loved one and what's going on at home.


[Dr. Olivio] Yes. In our research, we found that the disruptive behaviors and the memory problems are the things that the caregivers rate as being most stressful.


[Dr. Peter Salgo] It sounds to me as if this is where burnout begins to happen. Am I right about that?


[Dr. Olivio] Definitely.


[Dr. Peter Salgo] Was that the case for you women?


[Sybil] Absolutely. For me, I went down to assist my brother-in-law with the caregivers who were coming in and tried to help them manage her, and so I was there for about a month, at one stretch, and in one particular instance, my brother-in-law happened to be on the phone with my sister's physician, and my sister became very, very agitated, and there was a basket of laundry and there was a shirt on the top, and so he was talking to her doctor, the doctor was saying, "How is she doing today?" and so forth. And my sister reached into the laundry basket with that shirt, and she slapped her husband across the face, and the buttons caught him. Well, the doctor heard him exclaim and immediately, she put into action calling the police because she said, "My first thing is to make sure everyone in that house is safe."


[Dr. Peter Salgo] Wow.


[Sybil] And I went outside, and I was confronted with five police cars and an ambulance which was ready to strap her down and take her in to the hospital. And I had to go out and say, "I'm here. I will make sure that she's safe and so forth, and we are not afraid," but there are laws, and the law required that I drive her to the hospital for a psych evaluation.


[Dr. Peter Salgo] Wow. And I think that the underlying topic here, the underlying drum beat is this is someone you ove.


[Sybil] Yes.


[Gina] I just wanted to address something that the doctor said.


[Dr. Peter Salgo] Sure.


[Gina] When you look at someone, and I'm specifically speaking of my mom, you see the outer package, and it's the same outer package I've known all my life.


[Dr. Peter Salgo] Exactly.


[Gina] So if I looked at you and you had a cast on, I would say, “You can't play baseball today." And I would know your limitations. But when I look at her, I see the outer package, it's Mom. So when she strikes out, whether physically or verbally, sometimes I'll just strike back and I'll say, you know, "Why are you saying that to me?" or "Why are you calling me that?" or whatever. And it's harder because it's not her inside, but it's her inside, so there's a different.


[Dr. Peter Salgo] It's not the mom you know.


[Gina] Yes.


[Pam] You know, apropos of that and everything else, there are so many things -- there are booklets and pamphlets you can get with all these aids that you can avail yourself of, but they're bullet points, and there are no parentheses underneath, like respite care. Yes, you desperately need help and respite care. But going along with respite care means leaving your loved one alone with somebody else, which brings upon the most terrible guilt that you can have for leaving them. And inevitably, when I would leave for respite care, he would take a turn or something else would happen. He'd act out or something would happen, and I would be compelled to rush home and then feel terribly guilty that I had left him alone in other people's care.


[Dr. Peter Salgo] Olivio, you're just nodding and nodding. You've heard all this.


[Dr. Olivio] Definitely. Definitely. One thing to think about when you are using formal caregiving services -- So, we talk about caregiving as you guys do as informal caregiving, but when you're using services such as formal care, it's very important that you talk to those individuals and see how they've been trained to deal with these disruptive behaviors and these memory problems because if they haven't been trained properly, as you said, it can definitely be a case where once they come in, the manner in which they deal with these things could be very disruptive.


[Dr. Peter Salgo] What is Stage 3? What are the challenges there?


[Dr. Olivio] So, people think of Alzheimer's Disease as seven stages, but you can simplify it, as we are doing now, as talking about the early stages, the middle, and the end stages. So, in the end stages, we see more actual physical limitations. We see the person with Alzheimer's forgetting to eat. We see them forgetting to swallow. We see them being less mobile. We also see problems with incontinence -- both urinary and bowel. And as we know, when a person is not able to use the restroom, that's really physically demanding, and that's really one of the main reasons a lot of people decide to nursing home place, because they can no longer help with those things.


[Pam] That was a decisive moment for us, is that we were convinced we could do it. We were gonna do it to the bitter end because we loved him and he deserved it and whatever, but when the bowel issues and the toileting issues got so bad, there was just no other choice.


[Dr. Peter Salgo] How did you work through this?


[Gina] We're in the midst of it right now. We have our issues, and we just work through it. It's difficult because you're up in the middle of the night several times, especially women in general, but then with this, and I do want to add one thing, which I forgot to mention, is that my husband is helping me, and I know you mentioned that it's rare that men are the caregivers, but my husband is right alongside me, and I'm very thankful for that. But, yeah, we're dealing with it. It's difficult. As I said, you lose sleep, but, right now, we're not having a bowel issue, so we're okay. A day barely goes by where I don't shed a tear because I'm looking at my mom, and... [ Voice breaking ] She's not who she was, and I try to do everything I can to try to make her who she was, and it doesn't work. And it's difficult, but I am trying to help her to be as independent as possible. I may button her right to her belly button and ask her to do the bottom two or -- Whatever it is, and it may take longer, but I try to let her try, and then we'll take over from there. So it's difficult, but we're persevering.


[Dr. Peter Salgo] What were your biggest surprises? As you look at this and you look back on this, what were the biggest surprises?


[Sybil] I think, for me, one of the biggest surprises was the personality change that was so drastic, that this person I had known all my life now became very angry, not only to me, but to her husband, and the two of them, they were married over 40 years and loved each other dearly, and still do. I would like to follow up and say that once your loved one goes into a nursing home, memory care facility, whatever, the caregiving does not end there. I still receive phone calls. I am the second or the third line of defense. I receive calls from her facility in North Carolina -- 3:00, 4:00 in the morning. Fortunate enough that I have two grown sons, they live in North Carolina. They are working, and one is a young father. But there's not a day or a moment that I have ever called them at work or wherever and said, "I need you to go immediately to Aunt Gale," that they don't respond with “You've got it, Mom."


[Dr. Peter Salgo] Mm-hmm. You've got a great family.


[Sybil] I couldn't make it without them.


[Dr. Peter Salgo] Now, Olivio, you've done your research. Your research is really involved -- caregivers.


[Dr. Olivio] Yes.


[Dr. Peter Salgo] Now, let's take a look, if we can. Break this down for me based on the research you've got.


[Dr. Olivio] Okay.


[Dr. Peter Salgo] Satisfaction with their role as a caregiver.


[Dr. Olivio} Yes.


[Dr. Peter Salgo] Is there a difference based on ethnicity, religion, geocentricity -- what?


[Dr. Olivio] Mm-hmm. Now, what we have found in some of our studies -- I'll specifically talk about some work that was done in the South. I'm at the University of Alabama at Birmingham. So we recruited participants within a 50-mile radius of the campus, specifically looking at African-Americans and Caucasians. So there was no intervention involved in this research yet. We were strictly doing observational studies, following caregivers for around 7, 8 years, and we found that African-Americans rated higher levels of satisfaction with the social support that they were receiving from their networks. So we didn't see any difference in the size of the network, so they had the same amount of people -- both groups did – but African-Americans, within that geographic area, were rating their levels of satisfaction with the support that they were receiving as higher.


[Dr. Peter Salgo] Didn't you find that the quality of the social support was more important than the quantity of the social support?


[Dr. Olivio] Exactly.


[Dr. Peter Salgo] What does that mean?


[Dr. Olivio] So, all social support is not good social support. So if you visit your family member who's caring for a loved one and you say, "Wow, Dad really looks good," that makes the caregiver understand that you truly don't understand the experience of being a caregiver. So sometimes, you know, making those types of comments is really not beneficial to the caregiver, or trying to change the way the caregiver I providing care or downgrading in some kind of way their job as a caregiver.


[Dr. Peter Salgo] Let's go around, and we'll give each of you a moment to leave our viewers with something that you think is important. Gina, why don't we start with you?


[Gina] Well, I would like to advise your viewers to look into long-term care. My mom got it at a time when it really wasn't popular, and we're very thankful that she has it. My husband and I have since gotten it. And you were asking about the role of spirituality, and I have many friends praying for me, and I know that's carrying me through.


[Dr. Peter Salgo] Sybil.


[Sybil] I'd like to echo what Gina says, as well. My sister was quite smart enough or fortuitous enough before she got Alzheimer's to take our long-term care insurance through her job. However, a lot of people don't know that depending on the policy that you take out, there's a limitation of period of time that it will cover. Her policy covers five years. My sister was diagnosed first in her 50s. She is now in her 70s. So she's living in a medical care facility because her husband cannot maintain to take care of her by himself. He's 10 years older than she is. And so he had to sell his practice, his building -- he was a dentist -- and come out-of-pocket along with other family members.


[Dr. Peter Salgo] Pam.


[Pam] It's so important for everybody to look at their loved ones and remember the people they used to be. Dignity is very, very important, for you to keep it aware of it and keep them feeling as much dignity in their life and control as they possible can. And I saw so many things at the end of Brock's long illness that made me know that he, at some level, he still was in there. When you see the horrible end of it and the tragedy of it, also try to remember who they are and love them and remember all you can, for their sake, because it's important for you, too, to remember them as who they were.


[Dr. Peter Salgo] Wow. Pam, Sybil, Gina, thank you so much for being here. Dr. Clay, thank you so much for joining us, as well. I would like to thank our studio audience for being here today. It was great having you here. I'd like to thank you at home, as well, for tuning in and joining us on-air today. Remember, you can get more second opinions and patient stories on our website at You can continue the conversation on Facebook, Twitter, and Instagram where we are live every day with health information. I'm Dr. Peter Salgo, and I'll see you next week for another "Second Opinion."


[ Applause ]


[Narrator] Behind every heartbeat is a story we can learn from. As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. "Second Opinion" is funded by Blue Cross Blue Shield.


[Announcer] "Second Opinion" is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.