Read about how Sabina, the cargiver, Janet, the daycare center director and Bernard, the son, feel. See Part I about how David, the patient and Rachel, the wife feel.
Sabina, the caregiver:
I don't know how to manage that man. He's really very difficult. I came to be a caregiver from the Philippines. My sister and my aunt are also caregivers and they found me this position. I thought I'd have to help an old man walk, and go to the toilet; maybe feed him, and dress him, but this man is not disabled physically. He's disabled mentally. That's so much more difficult.
He accuses me all day long of trying to harm him. He thinks I'm stealing his belongings. If he misplaces his toothbrush or his socks, he says I stole them. It's not nice to be accused all the time of stealing. In the Philippines we're very moral people.
He also runs out of the house and I have to quickly run after him, because he can get lost. He acts queerly. He talks to the walls and the stove -- as if he's seeing spirits. It's spooky.
I feel sorry for his wife. She's really falling apart. She tells me he's been deteriorating like this for the past year. Sometimes she's so distressed she cries her heart out. I think it's good I'm there for her sake. Their children are very nice; they sometimes give me a present, or some extra money. I know they feel guilty that they're not there to look after their father, so they pay me extra for doing their job.
Beside the children, and sometimes the doctor, nobody ever comes into that house. It's not like in the Philippines where we have cousins and aunts and uncles and neighbors all there to help out. It's really a very quiet and sad household. If a salesman or mailman comes to the door, the misses won't let her husband talk to them. She doesn't want anyone to see him. She's ashamed of him and I think he feels that. He feels squashed.
Sometimes Mr. David mixes up between day and night, and then I don't get any sleep at all. The best is when he goes to the daycare center. I accompany him. It's wonderful there. All the people are like Mr. David -- they all forget. But there nobody cares if your mind is clear or mixed up. They like everyone just as they are, and Mr. David just blossoms under their friendliness.
The group leaders talk very nicely to the demented people. They give them activities to do at which they can succeed. Mr. David has a good voice and remembers a lot of songs, so they're always calling on him to sing for them. That makes him proud. If someone gets upset they don't start to argue with him; they try to take his mind off of what's disturbing them. I've learned a lot about dealing with people with dementia. There are other Filipino helpers there, and we have a great time together while the old people are dancing or doing exercises.
Now when Mr. David can't go to the center I sometimes do those dances or exercises with him at home. His wife is very impressed. I try to talk to him like they do at the center too. I don't get as upset anymore when he thinks I've taken things from him, or when he gets agitated. I simply take him to the window to watch the scene outside, or start to sing with him.
They're always asking me to do things or not to do things -- and I'm always disappointing them.
But there are some problems with Mr. David that I haven't solved and I don't know what to do if he talks back to the television set or to himself in the mirror. The worst is when he turns violent and starts to hit me. I know he's not responsible but that's too hard to take. I really thought I'd leave him the first time he did that, but I feel sorry for him and for his wife, and I know he really doesn't know what he's doing. I've got another l0 months before I take a vacation to the Philippines to see my family. I'll try very hard to hold out until then. Meanwhile I'm learning a lot.
Janet, the daycare center director:
One can learn a lot from David, who is one of our most problematic members. He's quite disoriented and often agitated. I believe his wife is having a very hard time managing him at home, even though they have a live-in helper. Despite his advanced stage of Alzheimer's and the fact that many of his mental functions are deteriorated, he reacts very positively to stimuli like music and physical activity.
When David first started coming to the center he was very reluctant to join in any activity and demanded to be taken home. For a while I really didn't think we could absorb him in the group. We gave him a lot of individual attention and a feeling that he was wanted. We referred to him by name often, asking his opinion and requesting his participation in group discussions. Gradually we gained his confidence, and he began to flower in the climate of acceptance that we maintain here.
When we learned that he had a talent for singing, and remembered many songs, we found a field in which he could distinguish himself and this enabled him to make a place for himself in the group. His self-confidence and self-image have improved wonderfully in the past few weeks and he is much easier to work with as a result.
There are still periods of irritation and disquiet, when he wanders around the room or gets aggressive. We've learned to tune into his inner voice, and we try to find out what's bothering him. Sometimes he simply needs to go to the toilet; sometimes he's thirsty. Once he was anxious that he couldn't find his coat, and a few times when he'd had tension at home with his wife, he needed simply to talk to her on the telephone to relax. It's not easy finding the right key for agitation in members like David, but from experience we've learned some tricks of the trade.
Our approach is a team approach, and all members of the staff think together how to involve each member more, how to give each one special attention and the opportunity to shine in a group setting. Most of all, we put our heads together to find the best programs for our members and at monthly meetings with our supervisor and medical consultant, we try to find the best approach to met each one's needs.
At one of these meetings we discussed David's increasing paranoia. We've heard from the wife and the caregiver that he often accuses them of taking his things or of conspiring against him. In the center he's sometimes attacked other members because he thought they were harming him. Our medical consultant will try prescribing a mild drug for a short trial period, and our social worker will meet with the family (the children and the wife) to try to focus on which issues illicit the outbursts of paranoia and how best to handle them.
I feel one of the main sources of David's restlessness is his family situation. Therefore one of our aims in the coming months is to work more closely with his wife and children, helping them understand the nature of the illness and its manifestations and helping her, especially, to roll with the tide rather than fighting it. If the children are involved more actively, that will also take some of the burden off of his wife, and she could possibly benefit from one of our support groups. There are also ways of adapting the physical home environment to be more user-friendly for David.
It's certainly not easy coping with a demented relative in the home and we appreciate the stress that his wife is under. Because we share the common goal of making life better for David, I think she'll be more prepared to hear our views and adopt some of our methods. Already I've noticed that the caregiver has started to model us, the way we talk to our members or allow them more freedom, in a supervised framework, and that's very good. The coordinated efforts between the center's staff and the family will assure a more unified and effective approach to David and will hopefully have a positive impact on this lovely man with an unfortunate disease.
Bernard, the son:
It took me a long time to get used to the idea that dad is suffering from a disease. For months, maybe even a year, I pretended that he was just a bit under the weather, or even that he didn't have enough to do and was fishing for attention. Once, I'm ashamed now to admit it, I even accused him of putting on an act, trying to get mom's goat. Mom was taking the changes in him very hard. Every time I'd go there she'd cry and relate a whole series of "What He's Done Now."
Since I couldn't do anything to relieve the situation, I found myself trying to get out of it. I'd stay away for whatever excuse came along; I really didn't like being in that home anymore. Mother must have caught on and she became more reserved when I came over. My brother, Aaron, called me a few times to "discuss the matter." He complained that I wasn't doing my share and that mother needed us now. It's very well for him to talk -- he's self employed and he has only two children, both grown up. I have a boss to keep happy, and that's very hard, I can tell you; and two of our children are still in high school, with all the problems that teen-agers bring home nowadays.
We had a real fight about it. It's not pleasant to remember. He said we should try and get over there more often, take turns spending the weekends with dad, stimulate him, take the burden off of mom.... I told him to get off my back; I'm already doing more than I can. I feel so frustrated and pulled by different responsibilities as it is. My wife isn't much help either. She's complaining just the opposite: that I spend too much time with my parents, and worry more about their welfare than hers and the kids'.
But when I feel sorry for myself, I think of poor dad, and then I know I have nothing to complain about. He's really off his walker -- he forgets everything. My dad! Why he was such a champion checkers player. It's weird. He's forgotten what to do in the game. He used to teach me tricks. He was such a wonderful father. It's so painful to see him like this, sitting passively, even fearful, trying to keep out of mom's way. If I were a little boy again, I'd cry. But since I can't do that, I fight with my brother and yell at my kids, and I'm a mess.
After Aaron and I had that fight, we got together and decided that things can't continue like this. We investigated and hired a Filipino caregiver. It's costing us an arm and a leg -- the parents never put away money for things like that, but I think it's money well spent. Since the helper has come to live with them, mom gets more sleep at night and she can share the burden with someone beside us. Mind you when my wife found out the price, she had a fit. What can I do? It's lucky that her parents needed her to help them move recently and I could play the injured spouse for a change.
I wonder if we should consider finding a place for dad as well. He's become so dependent and unreliable lately. Maybe the best solution would be putting him in a nursing home. I think being under the care of professional people would be a comfort for mom and for us. But placement in a good home is even more expensive than paying for the live-in caregiver, and besides, I think dad would be even more confused outside his house, in a different setting. Aaron asked a doctor and that's what he told him. It's very hard trying to decide what's best for your own parents. I'm not used to making decisions for them -- they always made decisions for us.
I have another worry, when I look at my father these days. I worry that maybe dementia is hereditary and just like I'm going bald the way he is, maybe one day I'll also forget my wife's name and where I live. What a horrible thought! I'd rather die than be in that state, at least that's what I think right now. Mind you, he does have some quality of life. I know he likes seeing me and the grandchildren, even if he doesn't know our names. And at the daycare center he seems to shine under the care there. He likes their parties and their activities. It's a far cry from what he used to like doing, but it's clear he's enjoying himself.
Now that I think about it, there are a lot of things dad still enjoys. He likes sitting out in the sunshine and eating an ice cream cone. He seems happy when he's singing his head off in the shower and riding in the car with the window open. He enjoys our garden, just wandering around, doing nothing. You know, maybe instead of comparing him all the time to what he was and what we'd like him to still be, we should change our expectations. If he can't change, then at least we can.