When a loved one starts losing their memory, the world feels like it’s falling apart. Alzheimer’s disease is the sixth leading cause of death in the United States, and by some estimates, five million Americans are currently living with the disease. It’s an incredibly difficult diagnosis, both for the patient and the caregiver. According to the Alzheimer’s Association, 35 percent of caregivers for people with Alzheimer’s (or other dementias) say that their care responsibilities have negatively affected their health. We spoke with author Leslie Breslin, who cared for her father as he struggled with Alzheimer’s. He passed away in 2007. She detailed the harsh realities of dementia—and provided a few words of advice for staying healthy while facing an Alzheimer’s diagnosis. [Editorial note: This interview has been edited for length and clarity.] HEALTHYWAY: You’ve got a pretty amazing story of when you first noticed your father’s symptoms. It was Alzheimer’s, correct? LESLIE BRESLIN: That’s what they concluded. But, you know, 10 years ago, many dementias were diagnosed as Alzheimer’s. Since then, I’ve realized there’s many different forms of dementia, so was it true Alzheimer’s? I don’t know. Could you briefly tell the story of the moment when you realized things might not be okay? Well, my birthday is September 12, and I’m an only child. My dad was very into current events. This was 2001, and I did not hear from my dad when everything happened in New York. Considering that I was born in NY, and we had friends and family in New York, not hearing from my dad was weird. I let it go for a week, and I called him basically to give him a hard time for not calling me. And pretty much the first sentence freaked me out, and I knew something was wrong. I asked him, “Did you see all the stuff that’s going on in New York?” And his response was, “Yeah, I saw those bodies falling out of the sky, and those planes crashing into each other.” He said it like he was there. I said, “Dad, were you in New York on Tuesday?” And he said, “No, I was sitting at the bar.” He was in Florida at the time. That’s when I knew. [Editorial note: The Alzheimer’s Association provides a list of 10 symptoms of Alzheimer’s, which we’re linking here for any readers interested in recognizing the early warning signs. Remember, only a trained physician can make a diagnosis.] How long after that was there a diagnosis? Or did he go to the doctor after that? No, I finally got him to the doctor. It took four months before I finally got him to a doctor and got him an official diagnosis. He was living with me at the time. But within about three weeks of that phone call, he called me one day…I had gone to see him, and I knew. Good lord. The way he was living. I knew he couldn’t stay by himself. And at that same time—he was taking care of his mother with dementia for 10 years, and he told me that he had recently put her in a nursing home. Well, I spoke to the nursing home people, and I spoke to Adult Protective Services in Florida, and they told me that he had not put her in a nursing home. That they had taken her away for her own safety, because he was being so erratic. They thought he was [an] addict. How old was he at that point? He was 63. But, when all was said and done, and I looked back on things that he had been doing, I realized he was probably suffering from age 50. How did other members of your family react to the diagnosis and the changing behavior? Well, nobody really saw him but me. As far as their reactions—they didn’t care. It was mostly, “Well, what are you going to do with your Grandma’s stuff?” None of the family did anything. Nobody did anything to help me. So after the diagnosis, you’re pretty much on your own, trying to care for your father as he’s facing this horrible disease. I became caregiver for him in my house. In the midst of all that, I figured out my mom’s dad was suffering, and he wanted to come live with me as well. And it was like, “No, I can’t.” So I called my aunt, and she ultimately ended up moving in with him and taking care of him until he passed. Your grandfather had dementia as well? Yes. Were his symptoms very similar, or did his dementia manifest in a different way? I did not see him, but I spoke to him. I was the one who figured it out, in talking to him on the phone. For the life of me, I can’t remember exactly what he said, but he said something that made the hair on the back of my neck stand up, and I immediately called my aunt and said, “Grandpa’s got Alzheimer’s.” They at first diagnosed him with a stroke because he’d had a stroke before. But I kept telling everybody, “No, it’s dementia.” And they finally diagnosed him after—he lived in the Bronx and had a girlfriend, and he used to take her to and from work, which was about two blocks away. And one night he went to pick her up from work at 9 p.m., and they found him at 3 a.m. in Jersey. We spoke with a psychologist who mentioned that that’s kind of the first sign for a lot of people. When people have to go somewhere as a matter of routine, they get confused and don’t go to the right place. At that point, you’re living with your father. Could you tell me what it was like? Well, I got post-traumatic stress disorder, having my dad live with me. I also had a 3-year old, an 8-year old, and a husband who was bipolar with schizophrenic tendencies and wouldn’t take his meds. So, yeah, that was a little insane. The sundowning was the worst part. He would go into his bedroom at night and all hell would break loose, and all hell would break loose when he would come back out. [Editorial note: Sundowning refers to increases in behavioral problems and sleep issues, beginning at dusk and sometimes continuing late into the night. People with Alzheimer’s disease or dementia often experience sundowning, and may become agitated, confused, or anxious late in the day.] I would wake up and he would be standing naked at the foot of my bed. Or he’d be coming out of my bathroom, which was in my bedroom. He constantly insisted that we had 13 bathrooms and we were moving them at night. We had a three-bedroom, two-bathroom house, and the bathroom was across the hall from his room. [pullquote align=”center”]”Well, you have to—and this is hardest thing for anybody to do, me included—you have to not take anything they say or do personally. And keep telling yourself, ‘It’s not them, it’s the disease.'” —Leslie Breslin on Alzheimer’s[/pullquote] I had to do laundry every single day because of that. And the reason why I eventually ended up tricking him into taking himself into a psych ward was because he threatened to kill my children. He was also running away every day. And one of the days, he ran away after threatening my kids, my husband went and got an actual outside door lock, and we put it on the kid’s bedroom doors, so that to get into the kids room, from the outside, you had to have a key. And when we put them to bed at night, we told them, “You have to lock the door from here, and do not open the door for anybody but me, your dad, the police, or the fire department.” Did he have any sort of violent tendencies before the diagnosis? Yes. My dad was abusive to my mom, his girlfriends, me. I have scars to this day. And his mother was violent as well. And the strange thing is, when she got the dementia, she became the grandmother I always wanted. My grandmother and I hated each other until she got dementia, and then she became a sweet little old lady. She just didn’t know who I was. My dad stayed violent. So, as you mentioned, humor is one of the coping mechanism you’re using. What are some other coping mechanism you have? Well, you have to—and this is hardest thing for anybody to do, me included—you have to not take anything they say or do personally. And keep telling yourself, “It’s not them, it’s the disease.” And that’s the hardest thing to do. There are those moments where their “old selves”come back, and I imagine that’s incredibly difficult. How do you reconcile that when they’re doing something negative? You don’t. You don’t. You can’t. Because you start to be all over the place emotionally because they’re all over the place emotionally. And they can slip from who they really are to the disease, in the blink of an eye. And sometimes you don’t even realize [what] you were dealing with until later, until you reflect. That’s especially true once they get from moderate to more of the advanced stages of the disease. There was a moment with my dad that broke my heart, and it was after he was already in the nursing home. He had fallen and hurt himself, and they took him to the hospital. And when I got there, the doctor said, “Well, he’s non-communicative.” And I said, “No he’s not, he talks all the time. He talks to me everyday when I go see him.” He talked to me, but he wouldn’t talk to the doctors. I don’t know what he was seeing—I’m assuming he was hallucinating—but I was able to get some verbalization from him, but obviously I couldn’t get like, answers or anything from him that the doctors needed. But after everybody left, I was just kind of talking to him out loud and crying, and I said, “Dad, I’m so sorry, I’m going to do whatever I can to get you out of this nursing home.” He was behind me, so I wasn’t even looking at him, I was just kind of talking. And he said, “You will? You’ll do that for me?” And I looked at him, and said, “Yeah, dad, of course.” And he said, “Thank you.” And then he went away. What do you mean he went away? Like, he went back to inside of his head. And he was gone again. Did you get him out of the nursing home? Yes, I did. I got him into a different nursing home. [Editorial note: The Alzheimer’s Association provides this page to help family members find capable residential care facilities. The organization also provides resources for families who prefer in-home care.] And what was that like? It was better, because the place he was in—it was horrible. The next one was a very nice environment. Everybody was really sweet. For a while, I tried to get him back home once he became docile, and I did get him back home for one day. But my husband, at the time, was out of town, and I was home alone with my kids and my dad. The day that they brought him home was the day that he stopped walking. I couldn’t handle him by myself. So I got him for a day, and then I had to take him back to the nursing home the next day. What were his symptoms at that point? Was he pretty much non-communicative? Yes, he was non-communicative most of the time. He would speak, but it was nonsensical. By then, he had a feeding tube. Like I said, he stopped walking. He was just—he was a shell. When did he pass away? It took me another two months to fight them to get the feeding tube out. He died 48 hours after they took out the feeding tube. What year was that? 2007. I mean, all of this in the course of— Five years. That must have been incredibly difficult. What advice would you have for someone who’s just starting to go through this, that just received a diagnosis? Get their finances in order as quickly as possible or it’s a nightmare. Get them to a doctor as quickly as possible to get an official diagnosis or it’s a nightmare. Because if you don’t have an official diagnosis, you can’t do anything. These people are grown adults. At the beginning, they’re in that stage where they can bluff, and to people who don’t know them, they sound rational. But if you do know them, you know that what they’re saying isn’t true or non-nonsensical. So get a diagnosis, officially, as quickly as possible, and then gather as much support as you possibly can around you. Because it’s rough. And you will end up being ill yourself if you try to do it yourself. Have you thought about getting some regular testing for dementia? For myself? Yes. I’ve worried about me, so I have gotten testing. So far, I’m fine. But I do worry. I don’t know how to phrase this. I’m just thinking of the people who suffer from this and how we should treat it as a society. Do you have any thoughts on that? Stop vilifying the family members that tell you that their family members have this. Believe people…I kept getting advice like, “Well, he’s a grown man, let him do what he wants. If he wants to drink, let him drink.” Okay, he’s out of his mind. I can’t just let him do what he wants to do. So help people. Don’t overburden them.
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