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. “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
Living With Alzheimer’s: How I Cared For My Father As He Lost His Memory
When her father was diagnosed with Alzheimer's, Leslie Breslin decided to take him into her home. It wasn't easy. Here's her story.
We independently evaluate all recommended products and services. If you click on links we provide, we may receive compensation.
Disclaimer: Just so you know, if you order an item through one of our posts, we may get a small share of the sale.