Read about how David, the patient and Rachel, the wife feel. Read Part II and see how Sabina, the cargiver, Janet, the daycare center director and Bernard, the son, feel.
David: I feel lost. I know I'm in a familiar place. I know these people around me, but I can't seem to remember their names. They're always asking me to do things, or not to do things -- and I'm always disappointing them. That woman, the one who calls me "dear", but seems so tense and nervous lately -- she's not my mother, but she's very central in this place. She's always saying to me, "Don't you remember, dear?" "Try to remember; you must know where you put your toothbrush...where we put the dirty clothes, how to take a bath."
And then when I don't remember, or when I do something that makes her angry, I can tell she's disappointed in me, that she wants to yell at me but that she's making an effort not to lose control. The other woman, though, the new one, who looks funny and talks with an accent, she treats me like a baby. "Come on now," she coaches me, "We're going to get dressed now. Put on your pants; that's a good boy." She treats me like I was retarded, or in a nursery school.
They're always asking me to do things or not to do things -- and I'm always disappointing them.
Sometimes the two of them talk about me over my head, as if I weren't here. "Did he eat his breakfast?" "I hope he's not coming down with a virus; he was coughing a lot." Instead of talking to me, instead of saying, "Did you eat your breakfast? "Why are you coughing?"
Today the familiar one said, "How was he on the walk?"
The foreign one, who's getting awfully bossy with me lately, answered her like a conspirator, "You know he doesn't know how to find the house by himself anymore. I watched to see if he knew in which direction to turn after the park and he didn't." You see -- they're trying to trip me up. They're making plans to get rid of me. They want to prove that I'm incompetent.
Sometimes the others, the young ones, come. They don't stay very long but they at least talk to me. "How're you, Dad?" "Everything alright?" "Want to play some checkers? I bet you can still beat me, right?" I smile, because they expect me to smile, but I don't know what to do with those little round things on the board when they bring them out, and I can see that they too are astonished at me, and disappointed. Then she starts to complain about me to them. I can hear her whispering and carrying on, and once I even saw she was crying. One of the young ones tried to comfort her. Nobody seems to want to comfort me. They don't see how hard it is for me.
There's one place where they don't make demands of me; where they like me for who I am. After I ride in the transport for a long, long time, and often get very restless, because the trip seems endless, we come to that big room, the center they call it. And there is that nice lady, the one they call ... I forget her name. But she always greets me with a smile, and she always says, "David, will you sing for us today?" If I forget the words of the song, she doesn't mind. If I don't want to do something, she doesn't make a fuss. She's so understanding and good to me.
Once I couldn't find my coat. I was very anxious. I kept getting up and walking all over looking for my coat. She came over to me and looked deep into my eyes. "Something's bothering you, today, David. Don't you feel well? Did you lose something?"
"Yes, yes, I can't find...." I couldn't tell her what it was that I couldn't find, because I forgot the word for coat, but at least she understood that I was distressed.
She very patiently went through all the things I could have lost, and when she came to coat, I nodded gratefully, and she said very kindly, "David, you didn't bring a coat. It's summer now and we don't need coats. See, here is the coat rack, and it's all empty -- nobody brings coats in the summer."
She didn't embarrass me; she didn't make fun of me; she didn't look at me as if I were stupid or crazy...she took the trouble to explain to me that I was looking for a coat, but we don't bring coats to the center now in the summer. Later I must have forgotten, and began to look for ...that thing I wear, again, but she knew then what I wanted, and she once again explained, very patiently, that I didn't bring a coat on this nice summer day. I really love that woman! What a pity that I can't remember her name. She's just lovely.
I have trouble finding words and remembering names. That's why I call the woman at home the familiar one and the foreign one, the new one. If I want something it takes me a long time to make people understand, and that drives them and me crazy. Sometimes, also, I see strange beings. I look at the moving figures on that screen, and they're talking to me, but I don't understand what they're saying. So I say, "Stop making that noise!" "What do you want here anyhow?" "Why don't you take your horse and ride off into the sunset like you did yesterday?" This upsets the familiar one very much, and sometimes she'll turn off that screen. That's good, because then there's peace and quiet again.
When the curtain moves in the breeze, or smoke rises from the pot, I see figures that they don't see. Sometimes the figures make me afraid, and I hide under the furniture. Sometimes I fight back because they make me very angry and I'm not going to let them do whatever they want -- no sir, not in my house. Then the new one will say, "Don't you think he needs a pill, misses?" and they'll try to get me to swallow a glass of water which I don't want to drink, because it has a funny taste to it.
If I drink it I feel very sleepy and fall all over things. Then I'm up all night and the new one begs me, "Can't you lie down a little, please Mr. David. I'm so, so tired, and you're carrying on like it's the middle of the day." When that happens I don't go to the center for a few days, because my days and nights get all mixed up and I'm not myself at all.
She sometimes takes me to the doctor, and once again she complains about me and talks about me above my head, as if I can't hear. "He's getting more and more difficult to handle. Should I give a larger dosage of sedatives? His days and nights get completely mixed up if I do... And he's beginning to be incontinent." The doctor is very sympathetic to her; once again he doesn't really talk to me. He examines me, he makes a joke or two that I can't understand, but I don't think he really cares about me.
Aside from the people at the center, I don't think anyone really cares about me. I'm just a burden; I'm in their way. They're always watching me, in case I do something wrong. They barely tolerate me. They only like it when I sit in my chair quietly and do nothing, or better yet sleep, so that I don't bother anyone. Maybe I should just sleep and sleep and sleep -- then nobody would be disappointed or frustrated with me. I'm so sad.
Rachel: It's so hard to see him this way -- he's just an empty shell, the outer layer of the husband I once knew and loved. This terrible disease, this dementia, is slowly eroding his mind, and he's like a child who has to be watched all the time. You can't imagine the things he can do. He'll walk out of the house without knowing where he's going and how to get back. Before we got the Filipino helper he got lost three times and the police had to be called in.
I know it's not his fault if he misplaces things or can't talk properly anymore. But it's so frustrating. Sometimes I lose my temper and then of course, I'm sorry, especially when I see that he's hurt, poor dear. We really had some good years together. We had a good marriage, and brought up two lovely children who are married themselves now, thank God. But to see what's become of him, it's just too painful sometimes.
I'm ashamed to admit it but it's such a relief when he's out of the house.
He puts his socks in the refrigerator and throws the newspaper down the toilet. He eats his breakfast and then demands to eat again. He's forgotten how to dress himself or how to take a bath. Can you imagine! Sometimes he sees himself in the mirror and doesn't recognize himself. He talks back to his own reflection -- it would be funny, if it weren't so pitiful. Sometimes he talks to the figures on the television. I can't begin to tell you what a nightmare it's become.
I'm embarrassed that other people see him in this state. It's been months now since I've had people over, and of course I don't want to leave him to go out myself, so essentially we're in social isolation these days. The only time I can go out, even to run a few errands, is when he goes to the daycare center or the caretaker takes him for a walk. I'm ashamed to admit it, but it's such a relief when he's out of the house.
The daycare center is wonderful for him. He comes back refreshed and much more relaxed. He really likes going there, and they accept him, whatever his handicaps. I wish I had their patience, but of course he's not their husband. They don't know what he was like, what a terrible deterioration this is, how he can't do anything in the house anymore.
I have to do all the banking, and all the shopping. That used to be his job. I find it very difficult -- it's also hard to make all the decisions alone. Of course the children are there, and they really are marvelous. They try to be understanding but they have families of their own, and their careers. How can I burden them more? I know it hurts them, too, when they see their father so affected. Barry couldn't believe that his father doesn't know how to play checkers anymore. He was such a champion once. Why, he taught that boy to play.
I took him to the doctor recently. He wasn't much help. He said, "Well, you know these things happen to men of his age..." and he gave me some sedatives to give David should he get especially upset or violent. I don't like giving him those pills; they mix him up completely and then he's even more confused that usual. He can't distinguish between day and night; he falls all over himself. I'll try to help him manage in the future without that prescription.
I don't know how much longer I can continue this way. I feel my own health being affected. I have trouble falling asleep and I get these terrible headaches. It's especially tough when he starts to be paranoid. "You're all against me," he told me the other day, and he really meant it. Sometimes he hits the caregiver. He was always such a gentle man. He's so changed. I don't know how I'll manage him.