How Can You and Your Family Best Prepare for the Impact of Alzheimer’s Disease?

In this episode, John Ross and Linda Nickerson introduce us to the devastating impact that Alzheimer’s Disease has not only on the patient but the family, friends and community surrounding him/her.

Episode Transcript
John
Welcome to Aging Insight. I'm John Ross, your host, elder law attorney here in the Ark-La-Tex, and we're here on Aging Insight to discuss the issues that relate to people as they get older. Trying to address those concerns that people have related to avoiding institutionalized care, avoiding becoming a burden on your friends and family, and ultimately avoiding spending every last penny of those hard earned dollars caring for yourself as you get older. We know that you can accomplish those goals, that you can stay out of a nursing home, that you can stay from being a burden on friends and family, and that you can preserve those precious assets. But you can only do so as long as you have the information, and the resources, and the knowledge to know how to get from today through the remainder of those years.
John
And that's what this program is about and that's what we're here to talk about today, is probably one of the most significant things that relates to people as they get older, one of the most difficult things for people to deal with, and that is Alzheimer's disease. Alzheimer's disease is a huge... It's gonna have a huge impact, not only on our community, but on the public as a whole. Because one thing about Alzheimer's, it doesn't just affect the person with the disease. There's so many diseases out there, there's cancers, and there's heart disease, and lots of these diseases... Many of them are very difficult to deal with. But one of the things that I always talk about with my clients is that, unlike a disease like heart disease or cancer, Alzheimer's is a disease that in many ways kills you, it takes your life long before your body actually leaves this world. You can lose the ability to care for yourself many years before you actually die.
John
And during that time your care needs are not just yours, but they impact everybody around you, your spouse, your kids, your employer, your banker, your financial advisor, everybody is impacted because of this. And things that we've talked about in other programs, like making sure you have powers of attorney, making sure you've planned for how you're going to pay for any long-term care needs, all of those are important aspects of this, but there are some other aspects related to Alzheimer's disease specifically, things about how you care for that person, resources that are available to you. And those are the kind of things that I wanted to talk about today.
John
Now anybody who knows me knows that I know lots of stuff, and when it comes to elder law there's lots of questions that people can ask that I'll have an answer to. But when it comes to things that are not directly related to law, I like to bring in somebody who is well-versed and an expert in their field. And a lot of things that people also know about me is that I'm on the Board of Directors for the Alzheimer's Alliance. And so what I wanted to do today was bring in the Executive Director for the Alzheimer's Alliance, who is sitting here next to me, and this is Linda Nickerson. So welcome to the show.
Guest
Thank you. Glad to be here.
John
So give us some idea of how big an impact Alzheimer's is gonna have, right now, and in the future.
Guest
Well, John, it's been around a long time. It's had a huge effect for a long time. We just didn't know what it was, or we ignored it, or we called it by a different name. But as the baby boomer generation has hit last January, it is really a numbers game. And when the baby boomer generation hit, those statistics just became enormous. And I tell everyone, when I do a presentation and I ask for a show of hands of people in the room that are affected directly or indirectly by the disease. And if every hand in that room doesn't go up, then I promise you people are ignoring or in denial about this disease, because believe it or not, before this is over, everyone of us are going to be directly or indirectly impacted by this disease.
John
Well, and I think a lot of times people don't realize how many people are aging up. One of the things that we've got today is, you mentioned the baby boom generation, we have 10,000 people who are turning 65 every single day in this country. And at the point where you get to say, I think one of the markers is about 80 years old, you've got close to a 50/50 chance.
Guest
At 85 for sure, it's a one in two chance. They're saying by 2020, which is tomorrow... [chuckle] 2020 is right around the corner. By 2020 that it will be one in two, 85 and older. I've never really been sure who they are, they that say all these things... [chuckle]
John
Right. Certainly.
Guest
But those are the statistics that we're being handed. And I think, also, it will be one in every five, 65 and older, were some of the last statistics that I've seen by '25, one in five.
John
Yeah, and that's a huge figure when we start realizing the actual impact that this has. And again, I mentioned something like heart disease or a cancer, where you're gonna become ill from it, you're gonna go to the hospital. But during the progression of that disease, you're actually able to continue to handle your own finances, to make your own decisions, to communicate to your loved ones what you want, how you want, things like that. But with Alzheimer's disease, you're gonna lose these sort of things overtime.
Guest
And some over less time than others. Some lose those abilities much quicker. The problem with Alzheimer's disease... If you have cancer, if you have diabetes, if you have those other illnesses, respiratory issues, we see it in your health and in your body. Alzheimer's is just a disease of the mind. And so many times the person with the diagnosis is perfectly healthy, perfectly healthy. So body-wise they have a long life ahead of them.
John
Right, right. And so, when you're taking care of somebody with Alzheimer's like that, there's probably a lot of specific issues related to how you deal with that person. And so what I wanna do is, we're gonna take a quick little break, and when we come back we're gonna talk about the different ways that you care for somebody with Alzheimer's. So we'll be back in just a second.
John
Welcome back to Aging Insight. I'm John Ross, and today we're talking with Linda Nickerson of the Tri-State Alzheimer's Alliance, located right here in Texarkana. Now, the Alzheimer's Alliance, although we're here in Texarkana, we actually serve a much larger area.
Guest
We serve 22 counties in Northeast Texas, Southwest Arkansas, and McCurtain County, Oklahoma.
John
Alright. And part of the reason we've gotta do that is because there's such a large number of people, and we've talked about how many people are affected by this disease, and not just that person, but also the people around them, their spouse, their children. One thing that I see a lot of times, and people will come into my office, and they're dealing with their mother or they're dealing with their spouse, and I can tell right away that they're messing up. They're making mistakes in how they provide that care. One of the things that I tell people a lot of times, and it seems very counter-intuitive, it doesn't seem like the right thing, but that's lying. And people will look at me and they'll say, "John, are you out of your mind?"
Guest
We like to call them "fiblets".
John
Fiblets, I like that. Fiblets is a good one. But the thing is, is if you're talking to somebody, and so often maybe that patient is saying that they wanna go home, even though they're in the home that they've lived in for the last 20 years. The instinct is to say, "Oh, but Dad, you are home. This is your home. Don't you remember? This is your home." And what happens, they get agitated, they get angry. So, as their caregiver, should I be arguing?
Guest
No, never. Never. The only thing that arguing is going to do is make matters worsen, because you're never going to convince an Alzheimer's patient that you're right, or that they're wrong. I tell caregivers all the time, as long as it's not endangering your loved one, go along with whatever it is, whatever they say, whatever story they're telling today, if it's not an endangerment to you or to your loved one, go along with it.
John
And I was explaining this to a client of mine the other day, and I said, "Imagine if I told you that this table is not here. You would look at me like I was out of my mind, and you would argue with me all day long. You would say 'John, there's a table right there. I can see the table.' And I would never convince you that that table is not there." And so, what you've got to realize is that you're not lying to the person, you're lying to the disease that is inhabiting that person.
Guest
Well John, truth is only truth in your reality. Truth only exist in your reality.
John
That's right. And so, when that parent is saying, "Well, I wanna go home, I wanna go home," saying over and over that you are home is not gonna get you there.
Guest
No.
John
But, "Hey, why don't you go grab some clothes, and we'll go... " And you go, and you get in the car, you go for a drive. You say, "Hey, you know what? Let's stop and get an ice-cream cone." And you stop, and you get an ice cream cone, and you drive right back to the house, and you say, "Okay, here we are. Get out." And you know what? You may have to do that a couple more times.
Guest
It may. But the thing about this disease, as we are born, and we live, and our body, our body develops, and it's moving this direction, when we hit that wall of Alzheimer's, the body continues to move forward in aging. The mind begins a regression. So the one thing that... The one example that I'll use on this is you'll have a mother, a grandmother, that has to go get her children from school, it's time to get her children from school. She's living with her child, and her child is now 60 years old. She's not in school anymore. But mom has regressed back to, she's that 20-something, 30-something mother who's children are at school. And I tell caregivers, "Listen to what your loved one is saying. That's the best indication about where they are in this regression, in this mental regression."
Guest
And so, "I'd really like to see my Momma. I wanna see my Momma. Please let me see my Momma." And then you say, "Well, don't you remember Lindy, your Mom died 40 years ago?" "Oh, Mom... My Momma... My Mommy's dead? Nobody told me. How come no one told me?" And so I go through all that grieving. I grieve, and I grieve, and I'm not just grieving 'cause my momma's died, I'm now mad because I didn't get to go to her funeral. Nobody told me my Momma had died, you kept it from me. Tomorrow, "I want Momma," and tomorrow you... 'Cause I've backed up a little more, remember? I've gone a little further back now. And so, tomorrow I wanna see my Mom, and you tell me my Mom is dead, and it's that grieving all over again. And there are families that do this on a repetitious basis, everyday they'll tell Mom that her Mom died 40 years ago. And so everyday, you've subjected Mom to all of that angst, and that sorrow, and that grief of hearing for the first time, 'cause it is the first time they've ever heard that they've lost a parent, a husband, a child.
John
Right. So imagine if you're the... Imagine for yourself, imagine having to learn something over and over, a terrible event in your life, and how much grief that you experience with that, and then imagine having to relive that every day because somebody around you is reminding you about it and you didn't know, you don't remember. So yeah, you wanna find out where the person is in their life, and if you can figure that out, a lot of times you can structure their environment so that it matches up with that age. And if they feel like they need to pick up the kids from school, maybe take them to go get the grandkids. If they're even younger in their mind, maybe some toys around. And that may seem strange, buying a doll for your 85-year-old mother, but if it's what makes them happy, then that's really all that matters.
Guest
There's a huge amount of 85-year-old Alzheimer's afflicted women that love baby dolls.
John
That's right.
Guest
But whether we're afflicted by Alzheimer's or not, most women love baby dolls anyway.
John
That's right. That's right. Alright. Well, we're gonna take another quick break, and when we come back we're gonna talk a little bit about how do you care for the caregiver, and how important that is. We'll be right back.
John
Welcome back to Aging Insight. I'm your host, John Ross, and today we're talking with Linda Nickerson of the Tri-State Alzheimer's Alliance. We're talking about Alzheimer's disease, and so far we've talked about that Alzheimer's disease has a huge impact on our community because so many people are afflicted by it, or will be, especially as the baby boomers continue to age, that you've gotta take special care in how you care for these people. There's certain ways that you need to treat them and deal with them, and many of those are different. You've gotta learn how to deal with that disease from the caregiver's standpoint. Now, probably one of the most surprising things to me about this disease is the impact on the caregiver.
John
For example, one of the most surprising statistics to me is that a person who is diagnosed with Alzheimer's disease has around a seven to 10 year life expectancy. Alzheimer's is a terminal illness and there is no cure as we sit here today. So if you're diagnosed with Alzheimer's, a seven to 10 year life expectancy. But the life expectancy of the spouse of that person with Alzheimer's is only three to five years. Now, to me, Linda, that's huge, because that's statistical proof that the disease is bad, but it's nothing compared to the toll that it takes on the caregiver, caring for that person.
Guest
And I think that's where caregiving with Alzheimer's is different than caregiving with some other diseases, because this is really 24/7. An Alzheimer's patient never sleeps, therefore their caregiver can never sleep. There's normally a bond that forms between the person with the disease and their caregiver. And so, for the most part the caregiver is reluctant to leave their loved one with anyone else because of that bonding and that dependence that develops. With that dependence also comes anger, and the person with the diseases, they are losing their independence. They can become very resentful. I know my Dad, at one point, made the comment that he would like to make the decision as to what he wore that day. Well, the truth is, at that exact moment he knew he would like to do that, but if you had put him in the closet to let him do that, he couldn't do that. An Alzheimer's patient, about two things, give them two things to do and they might can get the second thing done. But if you add a third item, a third task into there, they'll never accomplish three tasks. Such as taking a bath, I read something one time that said there's 240 tasks involved in taking a bath.
John
Sure. You've gotta get the water running, you've gotta make sure it's the right temperature, you've gotta get in, you've gotta scrub yourself.
Guest
You've gotta get undressed.
John
You've gotta get undressed, yeah. There's all these little things.
Guest
And then you've gotta come back out, dry off, and do those things. And that is difficult. It is very, very difficult. So caregiving with an Alzheimer's patient is a hands-on, 24/7. At some point, though they can still brush their teeth, they don't know how to brush their teeth, so a caregiver's gotta go in and brush their teeth to show their loved one how to brush their teeth.
John
Right.
Guest
How to put the toothpaste on the brush, how to hold the brush, how to put it in your mouth, and how to brush. It's like teaching a toddler how to brush their teeth.
John
Right, and if you think about it, having to do this all day long.
Guest
With everything.
John
Everyday. With everything, and as it goes through the night, the level of stress that's involved, that can be catastrophic for that caregiver, especially if it's a spousal caregiver who is probably pretty close to the same age, and so they may have their own health issues that are only getting worse because of the stress, because of the lack of sleep, and that's why getting a break... Getting a break every so often can be instrumental, and not just making them a better caregiver, but extending their life...
Guest
Absolutely.
John
And so, one of the things as part of the Alzheimer's Alliance that we have created here is a Respite Center, for that exact thing. So briefly tell us what that is.
John
And I think a lot of people, what they need to realize is that if you are that caregiver, it's vitally important for you to take a break. If what you wanna do is be a care giver, you can't do that if you have gotten so sick or ill that you find yourself in a skilled nursing facility or in the hospital, 'cause then, how are you gonna be that caregiver? So you've gotta get some rest. Now Linda, where is the Respite Center?
Guest
We are at 100 Memory Lane. We're one block North of Texas Boulevard, on the corner of North Olive and Memory Lane. At Texas Boulevard you turn next to Spring Lake Baptist Church.
John
Okay.
Guest
And I think it's real important that caregivers realize that if they get a little rest, then their time with their loved one is more meaningful. Statistically every six hours of respite care gives 22 days longer that you as a caregiver can keep your loved one in the home.
John
And that's wonderful. So that's gonna end our program today, and if you need any... If you have questions about Alzheimer's, get in touch with the Alzheimer's Alliance, get in touch with Linda, and we'll see you next time on Aging Insight.

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