I was introduced to Jackie and her husband Terry in the memory unit of a nursing home in Berkshire County. Jackie is 65 and has advanced Alzheimer’s. She no longer recognizes her family and is often anxious and perpetually in motion – requiring constant attention and patience from the nursing staff. When we gathered for her portrait and interview, Jackie was agitated by the camera equipment and unfamiliar faces. Terry helped me soothe Jackie, as only a loving spouse can, so we could manage a portrait together. After the picture Jackie left with the nurse so Terry and I could talk.
Terry and I sat together in the silence for a long moment before I asked him about the stigma of dementia. He replied, “The greatest stigma for person with Alzheimer’s is the feeling of secrecy. For years, Jackie would get angry if I’d say, ‘Time to take your medicine,’ or help her in any way that might indicate to somebody that she wasn’t normal. She wanted to hide that. She saw her mom go through the same thing, almost step-in-step with what Jackie is going through now.”
“When she was first diagnosed in 2014, Jackie knew what was coming, and I know she was scared. She told me that. She kept saying, ‘What’s going to happen to me?’ and all I could tell her was, ‘I’m not going anywhere. I’m going to take care of you.”’ Here we are today. I stayed with her, kept her in the house for five years.”
“Looking back, as people do when you have Alzheimer’s in the family, I saw signs earlier. I’d say, ‘Why are you reacting that way?’ if she’d get angry about something, and it was just because she didn’t get it at all, something I said or something she used to be able to do that she couldn’t do anymore. A lot of pieces of the puzzle fit after that diagnosis.”
“Jackie was this highly respected person in health care, especially in the sexually-transmitted diseases field. Doctors called her for advice and information, and it kept taking her longer and longer and longer to do her job. She would stay until 6:00 or 7:00. I wouldn’t know what she was doing. She’d say, ‘Oh, I had to do payroll.’ She used to take 20 minutes to do payroll. Now it took her three hours. I’d think, payroll took that long? Little things like a word or two. She would call a box a bag. ‘Let’s put it in the bag,’ and I’d say, ‘That’s a box,’ and I’d sort of be irritated.
“We were big Celtics fans, and we’d watch the games, and she used to yell, ‘Throw it, throw it,’ and I’d say, ‘It’s shoot it, shoot it,’ and I didn’t realize that she didn’t know that word anymore. She didn’t associate that with basketball. Little things like that, and then things between us, she’d be irritated about something; she didn’t understand my inflection or tone.”
I asked about Jackie’s fears after her diagnosis and how things had progressed for her. Terry said, “I think a lot of it was she knew that eventually her job, which was her love, I think she knew that was going to become an issue, and it did. Eventually, her supervisor, she called me and said, ‘I’ve noticed at work Jackie isn’t doing her paperwork. She’s not turning it in,’ and she would do stuff like just put it in a drawer. Whatever had to be turned in that week, put it in a drawer. Traffic tickets I would find under the seat of the car, things like that.
“What she had done when she got pulled over -- she got this piece of paper and she’d wad it up and stick it in under the seat of the car. I found two of those. I’d just pay them. Send the money in. When she couldn’t drive anymore, that was horrible for her. She would get lost if she had to deviate from—she used to visit her friend up in Adams, and they would walk, go for long walks and talk and everything, and as long as she took the same route all the time, she was fine, but if she’d ever had to detour or something like that, she would have been lost.”
“How are your sons coping with their mother’s declining heath?” I asked. Terry replied, “I think it’s hard for them. I think they have had a hard time of it. Jackie was devoted to them, and was a great mom, one of the best moms I’ve ever encountered, and I think it’s been hard. I know the last time they were down, I was down with Dan, that’s my youngest, and we were walking up and down the hall with Jackie. She didn’t really know who we were, and then when we left, I said, ‘Well, we’ve got to go,’ and she said, ‘Yeah, okay,’ and Dan said, ‘I’ve got to go, Mom. I won’t see you for a while,’ and she said, ‘Yeah, yeah, okay,’ and she wanted to start back down the hall, and she walked off down the hall, and we were by the door and he said, ‘Bye, Mom, I love you.’ She just went like this, waved her hand and kept on going. That was a heartbreaker.”
I asked Terry what would you tell somebody who was where you were five years ago? He replied, “First thing I’d say is, count to ten more often before you react to whatever it is, because yesterday they knew how to do this; today they don’t. That’s how it goes with an Alzheimer’s person. I think that I’ve tried to do a lot alone, just because I thought we were going to hit some plateau, and this is how we’d be able to go on, but you don’t hit a plateau with Alzheimer’s. It just keeps going downhill, and pretty soon it got to be like dealing with an infant. We literally had to put diapers on and everything.
Maybe with some cases, because Alzheimer’s is never the same, dementia is never the same in two people, but I kept thinking, we’ll hit normalcy, and I’ll be able to go another five years or something like that taking care of her here at home, and we’ll get the hang of it, and that didn’t come.”