Finding Love Again After Alzheimer's Takes A Spouse

September 4, 2019 at 10:50 AM PDT

Speaker 1: 00:00 Speaker 2: 00:27 Speaker 3: 01:00 Speaker 4: 01:00 Speaker 2: 01:27 Speaker 4: 01:50 Speaker 2: 02:30 Speaker 4: 03:13 Speaker 2: 03:35 Speaker 4: 04:16 Speaker 3: 04:57 Speaker 4: 04:57 Speaker 2: 05:15 Speaker 5: 05:57 Speaker 2: 06:40 Speaker 4: 07:11 Speaker 2: 07:29 Speaker 4: 08:04 Speaker 2: 08:12 Speaker 6: 08:40 Speaker 1: 08:41 Speaker 7: 08:58 A lot of daily care that dementia patients need isn't covered by regular insurance, so families have to step in themselves to care for loved ones in California. 1 million people are caregivers for Alzheimer's patients alone. We follow the parallel stories of two California caregivers who were forced into early retirement when their spouses were diagnosed in their 50s it's been a painful journey, but in the process, something unexpected happened. My name is John Lucas. I grew up in southern California in a city called Downey and we are currently at Cedar Creek in Los Gatos, which is a Alzheimer's and dementia care facility. Sharon is also from the same city. Downey. We met in high school, so we were high school sweethearts. She asked me to Sadie Hawkins dance when I was 16 years old, so yeah, high school sweetheart, very funny person, very lively. She continued with that personality all throughout her life until the disease hit her. [inaudible] [inaudible] hi, I'm Pat Martin and I'm from Fremont, California and we're sitting in my living room. One of the things and, and I've learned this now that I'm on the other side of this thing, is that caregivers in this situation really do believe I can do it myself. Bill had an atypical form of Alzheimer's disease, which is a frontotemporal dementia. So the first thing that started showing up for bill was his speech. My daughter started noticing things too. And so eventually they said, dad, I think you need to take mom in to to see someone. That was a very hard conversation cause when I told her, I told my wife, I want to take you into the doctor cause you have a memory problems. She got very resistive to it and was in denial and she thought I was trying to get rid of her and that I thought she was crazy. And she was 55 when they started that process. He was having some difficulty at work as well. And so he went to see a neurologist and the neurologist said, you know, it's probably stress, you know, Bill was in his early fifties at this time. I said, well you know, he's just not the same person. He kind of apathy, not, you know, not interested in life. And they actually, he actually said to me at that time, at that interview, I'll never forget this, they actually said, are you sure it's not you? Could this be menopause or something that's making you over-sensitive to him? So I could, at that time I couldn't, I couldn't believe it. I couldn't believe it. Well by the time she got the diagnosis, she was far enough along, she didn't understand what it meant. And originally we actually decided that we weren't going to tell her what, what the diagnosis was because she wasn't gonna understand it. It was going to be a hard conversation. After about three months or two or three months of that, it was, it was gut wrenching to us to try to keep it a secret and it didn't seem fair to her. So a Thanksgiving weekend, my daughters came home, we sat her down on the couch and we had, we had that discussion with her that she had disease and she had about eight or 10 years on average to live. We all had a big cry five minutes later. Sure enough, she had forgotten it and we moved on. But we felt better that we'd had the conversation. Yet when you finally got so bad that the dementia was moving into other areas of his brain, that he finally got diagnosed with primary Progressive Aphasia, which is a type of frontotemporal dementia. He had retired by that point because he wasn't able to work. So he didn't really retire with disability. And, uh, I had to retire at age 49 to take care of him as the 24, seven caregiver for her. At first, it just starts out keeping her entertained, making meals for doing all the cleaning, all the bill paying, whatever. But then it goes beyond that. She started to not be able to sleep at night time, kind of flip flopped on her. So I was starting to lose sleep. I cordoned off the house such that she could be safe in an area walking around at night while I tried to get some sleep. At the same time I was going to a support group and they were all telling me, you know, you gotta be thinking about placing her, you know, and I was trying to, trying to be the hero and not have to do that. And for me it reached a breaking point. Our daughter Liz was playing college soccer and bill had been her coach all through her youth and we had nothing else to do. So I just made sure we went to every one of her college games and I thoroughly enjoyed it and so to bill, but as his disease started progressing, we were at a game and her senior year and bill in the middle of the game got up and went out on the field. I had to get two men to pull him off the field. We had to take him out and basically close a chain link fence. I think he thought he was the coach and that's when I realized that this is more than I can do [inaudible] eventually I had to place bill in a memory care facility. None of that is covered by any kind of insurance. So probably spent a little over $300,000 on his care. We were lucky we had the money to be able to do that. Many people don't have those kinds of means. My retirement nest egg, some inheritance I got and currently some social stuff I've taken started taking social security early so they can help pay for it. And I have uh, moved out of my house and I'm renting it out to try to help with the costs. So we have programs all day long from entertainment games, reading trivia stuff and then just try it. The ones that they can keep active, they try to keep them at. A lot of them just sit around sleeping. And so this is Sharon [inaudible]. Sharon, how are you today? Look very nice today. Sorry. Just forgot how to use the doors so she can't get out of door unless somebody takes her off. She quit talking about probably a year and a half ago you some candies, but your favorite m and m's chocolate freak. She has a little hard time finding them in my hand. Sharing why candy we brought you. That's kind of how the day is spent. You want one more? Hello? [inaudible] it was the hardest decision I've ever made and it was the most amazing feeling coming out of here. All the emotions that hit freedom, guilt, sadness, joy, all of it coming down all at once. I just sat out in that parking lot for about 15 minutes and cried. And then I went home and started living my life again. Still her caregiver here. Uh, but I've, I've moved on. John is still in the, in the midst of the journey with Sharon and I understand that that journey is very difficult. I mean, he has a foot in two different worlds right now and I can be somebody that he can, he can say anything to. So we actually met through the advocacy program. Uh, we were both going out for our first, they call it a forum advocacy forum in Washington d C so when we got back from the forum, we had become, uh, friends on Facebook. Um, we set up a, a get to know you date at a coffee place in Santana row and we spent three hours talking to each other. The crowd faded away. We forgot we were even sitting in a coffee house. It was a magical three hours. And after that we just started dating more. And um, we fell in love and you know, it's been three years now. We talked about the fact we, we, we really are living life for four people because bill and Sharon, they got robbed. I envision a marrying pat and, uh, we'll have a big celebration of life for Sharon at some point and I hope that all of her friends and family come. It's really a celebration of life than people have gone through this loss and grief process for so long with Sharon that I think it's going to be a big relief to everyone once she's, when she's not suffering anymore. [inaudible] Sharon Lucas was admitted to hospice recently. John and pat are asking Congress for more funding for Alzheimer's research, more support for caregivers and early detection programs. That story was produced by Mary Franklin. Harvin [inaudible].

By KPBS Public Media

A report published earlier this year by the California Department of Health says more people in our state die from Alzheimer’s than anything else, except heart disease. Much of the care Alzheimer’s patients need is considered custodial, so it’s not covered by most insurance — and funding for patients like Sharon with early-onset Alzheimer’s is even more limited.