Dear WholeFamily Counselor:

My mother seems to be at an early stage of Alzheimer's, though the doctor says it is too soon to tell. She used to keep an immaculate home, but now it's often dirty and when I try to hire help, she often cancels them (though the first time I brought someone in, she let her work). There are other ways I have tried to offer to help her, such as making doctor appointments, but she insists she doesn't need help. My father is not much help. He just sits and watches TV and does not seem to care enough to help me out in keeping things running smoothly. One of my friends said his behavior reminds her of her father who was depressed when he acted the same way. I don't know where to begin. Do you have any advice?

Cathy

Dear Cathy,

The situation you describe is very frustrating. You don't have a definitive diagnosis which can explain your mother's behavior and so it's not clear just how much you can intervene. Meanwhile your father isn't much help because he seems to be wrapping himself in withdrawal or apathy. I don't have enough information about their relationship before your mother's strange deterioration, or whether you're the only one who's worrying about the situation, or if there are others around who are involved.

There are all sorts of tricks and hints how to deal with mental deterioration and you can get good advice from books and pamphlets on the subject or from special advisers which your local chapter of the Alzheimer's Association can recommend. Your mother's objection to taking help or having you make doctor appointments may stem from a need to prove her independence, even as she herself feels her control is dissipating.

For example, instead of saying, "Mother, I'm bringing in a cleaning lady tomorrow," you might try, "When would it be more convenient to have a cleaning woman come to the house, tomorrow or Wednesday?" or alternatively: "If the cleaning woman comes, do you want her to start with the windows or the kitchen," or "Do you want to supervise her or should I?"

Similarly with the doctor's appointment, you can give her the number and let her make the call (if she's capable) while you're hovering in the background, or you can give her alternatives -- which doctor, which day, to go by cab or in your car, etc. It won't solve all the frustrations and objections -- unreasonable ones, no doubt, but it will tackle one of the underlying reasons for her opposition and lack of cooperation -- her need for control.

Another underlying feeling most people with cognitive impairment experience is uncertainty, disorientation, a feeling of impending disaster -- all of which can make them terribly stubborn and unreasonable. In these cases arguing or trying to convince them by logic to do the reasonable thing is doomed to failure. One must use approaches that work with little children -- round-about methods, providing incentives like prizes ("when you finish your bath we'll have some ice cream") or simply swaying their attention from a point of dissension, even as we continue to respect them and treat them as adults. That's tough, I admit.

Your father's seemingly lack of cooperation, his withdrawal, is just as worrying. He may be saying one of two things: "Leave me alone, I can't handle this thing, it's beyond me, I don't have the strength to deal with it," or he may be implying: "Nothing is changed, don't make a mountain out of a molehill, we're all right just the way we are." If he's incapable of dealing with the tragic change that's happening, he needs one kind of approach -- the feeling that he's not alone, that you're there to help, that he won't be stuck with a situation he's afraid or incapable of handling. Maybe bringing in permanent home help will be reassuring. Getting information on what is happening, and what medical science now knows about dementia can also help.

If, on the other hand, your father is using a defense mechanism called DENIAL it's not necessarily wise to force him to face reality. Many people "flee" into denial because the reality of a situation is just too difficult for them to take. Here too support and affection by one's loved ones is helpful, as is professional counseling. There are support groups for spouses and children of demented elderly, which many find useful. But I wouldn't try to "shake" your dad out of his apathy and enlist his reluctant help, much as you might need it, until he's ready to "accept" the bitter truth. Time and exposure sometimes do the trick.

What all the experts in the field advise is to get a comprehensive medical assessment of your mother to ascertain if her decline is possibly reversible -- that is if something can be done to alleviate the situation or slow down the deterioration. Similarly, there is general consensus that the chief caregiver (you, in this case) must get good support and learn to take care of herself, which means looking after your health, mental and physical, and making sure that you get enough sleep, nourishment and emotional outlet for very problematic, stressful circumstances. Don't forget that if you collapse the whole system goes "kaput" -- so caring for the caretaker is of prime concern.

Good luck.