The Long Goodbye
It’s More Than Just About Forgetting Things
About 4 million people in the United States are afflicted with Alzheimer’s disease, it is an illness that makes it hard for people to remember, think and use language. It can make them act strange or moody. After awhile, people with Alzheimer’s have difficulty with the simplest tasks – like using the phone, cooking or handling money. Sadly, many caregivers receive little support. These are the stories of two Quincy residents suffering from Alzheimer’s and the people who spend every waking moment making sure they are safe, comfortable and loved.
Judy helps Jim get dressed every morning. “Keeping a routine is important (for him), “ Judy says. “Jim gets a shower every other day. After I finish helping him and Dad, I get dressed. That’s our morning routine.” “It’s part of her nature,” Jim says of Judy. “She’s the kind of person (who’s) right there all the time. She takes time to help people and keep up (with) stuff like all the grandkids too. I feel secure because of the way she does things – she covers all the bases. God, to think of what would happen if I didn’t have Judy.”
Judy helps Jim put on his shirt during their morning routine of getting ready for the day. Because of Alzheimer’s disease, Jim doesn’t recognize most common objects, including articles of clothing. “I could ask Jim to get a pair of pants, or a shirt from the closet and he wouldn’t know which are the pants and which are the shirts. He may even have trouble finding the closet,” Judy said. “There’s a cognitive disconnect in his mind.” When it comes to getting dressed, Jim says, “Sometimes I can’t tell what’s left from what’s right or what’s the right color. Sometimes I get confused about what’s tops or bottoms.” Through all this, Jim tries to keep a sense of humor. One morning Jim’s father-in-law asks Jim if he’s having trouble locating his coat, which is hanging in the closet where it is every morning. Jim answers, “ Oh, I can find it if I had about an hour or so.”
Jim can no longer read books without confusing the words, so he likes to listen to books on audiotapes. While at the Adult Day Service he often listens to audiotapes with his buddy, Ron Fisk. “ We met and got together. We like doing things. We’ll sit down and talk, and we like to listen to the (audio) tapes. We have a lot of things in common,” Jim says.
His cognitive abilities impaired, because of Alzheimer’s, Jim must use his sense of touch in order to navigate a spoon to the food on his plate. Though his eyesight is okay, he simply cannot make the connection as to what the food items on his plate are, or where they are located. “I see things pretty well, but sometimes I can’t quite know what it is, so I’ll ask someone,” Jim says. A few minutes after finishing lunch at the Adult Day Service cafeteria, Jim asks an aide what he had for lunch. He explains to the aide that his father-in-law always asks him what he has for lunch at the center, but “I have trouble remembering,” Jim says. “Did we have ham?” “No, you had meatballs,” the aide replies kindly.
During a trip to the grocery store, Judy tells Jim to “wait right here” before she walks back down the produce aisle to get something she missed. “It’s difficult for Jim to do errands with me,” Judy says, “because he loses me, Jim’s bound to wander off and follow some other lady if he thinks it’s me. He’s liable to get backhanded,” Judy says half jokingly. “He’s done it before – followed somebody else.” Jim says, “I get a little uncomfortable (in public places), I worry. If I see where I’ve lost her (Judy), I’ll call out her name.”
Adult Day Service volunteer Pat Buckner guides Jim as he helps Flossie Lindsey to the cafeteria on their way to lunch. Jim says the day service center is “the greatest thing to come along.” About his Alzheimer’s disease, Jim says, “There’s a frustration because there are things I’d like to do for myself, but it’s difficult for me. I have friends here who understand the situation and help. I help (people) out. It isn’t a whole lot, but when somebody needs something, I like to help. I hope I never get to the point where I’m someone who can’t do anything, (so) I try to get into helping others.”
“We’re Just Robbed of Little Pieces at a Time.”
– Glenny Meyer, describing what the loved ones of Alzheimer’s patients feel as the disorder deteriorates the afflicted.
Glenny Meyer visits her mother Eleanor Schuecking, who has advanced Alzheimer’s disease, about five times a week at the Good Samaritan Home in Quincy. “At the end of a visit, it’s rewarding to me when I can get a response to my hugs and kisses. I feel it’s rewarding for her too when she is able to respond. “It’s an affirmation that she knows it’s me and is glad I came to see her,” Glenny says.
At times Glenny is a complete stranger to her mom. “I’m getting used to my mom not knowing who I am at times,” Glenny said. “Sometimes my mom will ask me, “Who are you?” or “Where did you come from?” Yet Glenny says, “I haven’t had a day of visiting with her when I felt she didn’t know me by the time our visit is over. Occasionally she will say my name, and that’s a really good day for me.”
Glenny coaxes El to take a bite of food, while feeding her dinner at the nursing home. After El started forgetting how to eat on her own a few years ago, it became necessary to feed her by hand. When El began “pocketing” food in her mouth, because she didn’t remember to chew and swallow it, her meals had to be pureed. “It was awkward at first, feeding an adult – especially a parent – and trying to figure out what she wants (to eat), ” Glenny explains. “It’s satisfying though, because there are a few things I know she likes to eat, that I can personally make sure she gets.”
“Touching is something humans all seem to respond too,” Glenny says, “I do this more as her illness progresses – It’s a way of communicating, and it’s soothing for her. My mom seems to get a lot of satisfaction from that. I think it also helps her know who I am, or she’s more aware of my presence.”
Glenny takes her mother on a regular basis to the nursing home General Store for a treat of white soda or a milkshake. “There are plenty of pretty things on the shelves for her to look at, and we often visit with the people in the store,” Glenny said.
Placed in bed for an afternoon nap in her room at the nursing home, El holds tightly to her stuffed animal named after the last dog she once owned – a little toy poodle named Sonny. “Alzheimer’s has rendered my mom totally helpless and dependent on strangers to take care of her every need,” Glenny says, “Even the people she sees all the time (at the nursing home) are strangers again ten minutes later. She is isolated in her mind. She doesn’t know what’s happening and can’t express her thoughts. “For me, Alzheimer’s is terribly humbling, frightening, and gives me a feeling of helplessness, because there’s nothing I can do about it. One day she’s not going to know me – one day we won’t be able to connect at all,” Glenny says, as she dabs at the tears in her eyes with a tissue. Answering why she gives so much of her time visiting her mother, Glenny replies, “People with Alzheimer’s need someone to go on this journey with, because it’s a lonesome journey.”
El likes to spend time sitting near the large windows along the hallway at the nursing home. “When she first went to the home she sat there (looking out the window) and would tell me about the homes across the yard. She believed she once lived in one of those houses. I don’t know if she can even see those houses anymore, because of her (poor) eyesight, but she still seems to like to look out the window. When she lived at her own home, my mom used to spend a lot of time sitting near the window. She could see dad coming up the hill from the shed and things like that. I think now she superimposes memories like those when she looks out the windows at the nursing home. It’s like a window to an imaginary world – a window from her past.”