FlowersHelping the Person Let Go of Independent Living

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Those who develop Alzheimer's disease almost always begin their journey into dementia living competently as independent adults. They don't give their competence or independence much thought--it's easy to take for granted. Competence and independence are fundamental to people's self-concepts. How do you feel when someone questions your competence at any task? Now imagine how you would feel if a loved one, often one of your children, began questioning your ability to take care of your own affairs. It's a wrenching process, one that rarely brings out the best in anyone.

Initially, the affected individual almost always dismisses any questions about competence as ridiculous: "I can take care of myself. Leave me alone. I'm fine, just a little absent-minded, that's all."

The key at this stage is to communicate your feelings of love and concern as you urge the person to have a complete medical evaluation. Although Alzheimer's disease accounts for 50 to 60 percent of dementing illness, about half of suspected dementias are not Alzheimer's, and many of them are treatable. "Of course you're fine, Mom. But you've said yourself that your absent-mindedness is bothering you. It's probably some minor thing your doctor can treat, and then you'll be back to your old self again. Want me to make an appointment for you?"

Eventually, loved ones insist that the affected person have a medical evaluation. Don't expect the person to go quietly.

When the diagnosis is early-stage Alzheimer's, life suddenly changes for the affected individual and for the entire family. Barring any miraculous treatment breakthroughs, the future holds only the grim certainty of mental deterioration, loss of independence, and eventually, total dependence.

A journey into Alzheimer's disease brings many losses, but frequently, the early ones are the hardest because affected individuals still have enough cognitive function to understand--and feel horrified by--what's befallen them. Early losses are also very hard on caregivers because they're still getting used to the diagnosis and the wrenching reality of a future consumed by increasing caregiving.

Among early losses are: retiring from work, giving up driving, turning over financial affairs, and finally, saying goodbye to independent living. The question, of course, is: When? It's impossible to generalize. For caregivers, the key is to determine if affected individuals can handle these activities adequately, safely, and without becoming distraught. As long as they can, they should keep doing them. But as soon as they cannot, caregivers must insist that they be given up.

Retiring From Work

If people with early-stage Alzheimer's disease are still working, the best course of action is to inform the employer immediately. Over time, the person's decreasing competence is bound to affect work performance, and the employer has a right to know. However, people also have a right to medical confidentiality. Ask the employer or human resources department to inform only those who truly need to know. Affected individuals are, of course, free to discuss their situation with anyone they choose.

Depending on the type of work involved, affected individuals may be able to continue for a while, or may be able to switch to less demanding responsibilities. But eventually, employers will insist that people with Alzheimer's disease can no longer function competently enough to continue working.

When this happens, the news is often wrenching. Most people have a great deal of identity tied up in their jobs, and it hurts deeply to be told they can no longer perform competently. Many people resist retiring. They insist that they are still fine, and that their supervisors and loved ones are persecuting them for no reason. Even if work errors can be monitored and recorded, don't expect affected individuals to be persuaded by a lengthening tally of their inadequacies. Urge them to obtain some kind of counseling--an employee assistance program, a trusted clergy person, or a social worker or psychotherapist experienced with dementing illnesses. Or call a meeting where a group of close friends and relatives join together in imploring the person to retire. Expect to be accused of "ganging up" on the person. If all else fails, an employer can institute dismissal proceedings. At that point, most people retire instead of facing the embarrassment of being fired.

Retirement also has profound financial consequences. Urge individuals with early-stage Alzheimer's disease to allow you to help them assess their financial condition, and assist them in obtaining Social Security benefits, a company pension, or personal retirement assets (IRA's, SEP IRA's, 401-K's, private pension plans, etc.)

In addition, Alzheimer's is a disabling disease, and the Social Security Disability Act mandates financial aid for those who can no longer work because of a disability. To qualify, the person must have worked for 20 of the past 40 calendar quarters (five of the last 10 years), and have been disabled for at least 12 months. You may need medical records to document the duration of disability. The Alzheimer's Association can also help you document disability--contact your local chapter. Be prepared to have a petition for disability benefits denied initially. If you are persistent, benefits may be granted on appeal.

As Alzheimer's disease progresses, affected individuals refer less and less to their working years and their attachments to work. Eventually, the whole subject fades away.

Giving Up Driving

Even mild Alzheimer's disease more than doubles risk of auto accidents, according to the National Institute on Aging. "Most people with early Alzheimer's are not fit to drive," Karlene Ball, Ph.D., a professor of psychology at the University of Alabama at Birmingham, told the New York Times.

A recent Swedish study shows that auto accidents may even serve as an early warning sign of Alzheimer's. In the study, brain autopsies were performed on 98 elderly people killed in auto accidents in Sweden or Finland. None had been diagnosed with Alzheimer's. But one-third showed the beginnings of the characteristic brain abnormalities, and another 20 percent showed brain abnormalities that suggested an earlier stage of the Alzheimer's process. The prevalence of Alzheimer's in the general elderly population is much lower. Perhaps driving ability is one of the first skills lost to the disease, presumably because it demands so much information- processing, and requires constant decision-making. (Lancet, 4-18-97).

The longer demented individuals continue driving, the greater their risk of accidents that hurt not only themselves, but others as well. Like a job, a driver's license is a symbol of competent adulthood, not to mention that for the vast majority of Americans, loss of a driver's license makes daily living considerably more difficult.

When you begin suggesting that affected individuals stop driving, expect resistance. Expect them to dredge up all the times you have gotten lost, missed stop signs, run red lights, and had accidents. They may have a point. But your own periodic lapses behind the wheel are quite different from lapses associated with a diagnosis of Alzheimer's.

The stakes are higher with driving than with many other activities because a demented driver can easily become a killer. Before insisting that people with Alzheimer's stop driving, insist that they reduce their alcohol consumption or stop drinking altogether. With advancing age, a given amount of alcohol causes increasing impairment of reaction time, coordination, and all the thought processes involved in driving.

But at some point, you must demand that affected individuals stop driving. Be careful how you do this. Because of the potential for killing innocent bystanders, you might feel justified raising your voice and carrying on about how the affected individual has become a menace. But try to be more tactful. Affected individuals know they have a diagnosis of Alzheimer's disease, and they are aware of the implications. Do what you can to allow the person to save face and preserve personal dignity. Suggest that it would be easier for everyone if you drove and they rode. Or if they took a cab, or called a friend to take them places, or walked to close destinations.

You may feel tempted to put off insisting that a person with Alzheimer's disease stop driving. Use your judgment, but you should also know that caregivers can be held legally liable if they knowingly allow demented individuals to drive. In other words, if your loved one gets into an accident, you can be sued and possibly be held criminally liable.

If your loved one refuses to stop driving voluntarily, you have several options: Ask a doctor to insist that the person stop driving. That way the physician is the bad guy, not you. Some states require that doctors report any illness that might impair driving ability to the Department of Motor Vehicles, for example, seizure disorder or dementing illnesses.

Take away the car keys.

Disable the car. If you feel comfortable under the hood, one easy way to do this is to remove the distributor cap. Another is to disconnect the starter motor. If you don't feel comfortable disabling the car mechanically,you might force another key into the ignition in such a way that it cannot be removed. Or jam the door locks.

Sell the car.

Once people with Alzheimer's disease stop driving, obtain a nondriver State ID card for check cashing and identification needs.

The end of driving marks the elimination of potential tragedy, but it marks the beginning of other problems for caregivers--becoming a chauffeur. Don't feel as though all the responsibility must fall on you. Recruit other family members and friends to help. Look into adult daycare programs that offer outings. Or for as long as the affected individual can, use cabs. They cost money, but if you add up the real cost of owning the car the person with Alzheimer's disease used to drive, cabs may be comparable--or cheaper.

As the disease progresses, affected individuals care less about driving, and eventually forget that they ever knew how.

Turning Over Financial Affairs

Like other aspects of independent life, for many people, especially men, money management has a symbolic component closely linked to self-determination and privacy. Even after they've lost some ability to balance a checkbook, deal with investments, file tax returns, or make change, many people with early-stage Alzheimer's disease cannot conceive of turning over their financial affairs to anyone else. As you assume more responsibility for the affected individual's finances, be prepared for accusations that "You're stealing from me!"

Begin the process of financial transition by offering to "check" the person's checkbook, tax returns, etc. Then, over time, quietly assume more financial responsibilities. Gather bills and pay them yourself. With trusted local merchants, establish "tabs" so that the affected individual can still shop, but without regard to what they pay. The merchant simply accepts whatever the person offers, and you settle up periodically. Once you have established legal guardianship, you can take over all of a person's financial affairs.

In an effort to keep people with early Alzheimer's from squandering money--paying $100 for a pound of coffee and then refusing to take change--some caregivers try to keep money away from them. This is often a mistake, as affected individuals may make nasty accusations. A better approach is to keep them supplied with small bills and change, so they can feel the security and self-esteem of "having money," without being able to waste very much of it.

As the disease progresses, affected individuals have less and less interest in money and finances, and eventually all financial concerns fade away.

Saying Good-bye to Independent Living

It can be very wrenching to leave one's own home and move in with a loved one or enter an assisted-living facility or nursing home. On a symbolic level, it is a clear statement that the affected individual is no longer a free agent, but has become dependent on others.

Reactions to this transition vary tremendously. Some people go meekly, relieved that others will take care of them, and glad to be rid of the increasingly confusing burdens of living independently. Others flatly refuse to leave their homes, and accuse family members of "kidnapping."

A good way to ease people with early Alzheimer's out of independent living and into living with someone else is through a slow transition process: First a combination of frequent visits from caregivers who help with cooking and housework. Next, a meals-on-wheels program, a maid, and a daytime aid a few days a week. Then full-time at- home help--in either their home, or yours.

In the transition away from independent living, there are no clear lines of demarcation that say: It's time to have full-time care. Use your judgment. But here are some signs to look for:

Clear confusion. Increasing loss or misplacement of necessary everyday objects, for example, finding the person's toothbrush in the refrigerator.

Changes in personal care. Wearing dirty or ripped clothing. Wearing shirts backwards. Going outside barefoot.

Changes in eating habits. Food left out. Meals uneaten. The stove left on. Evidence of burned food. Evidence of eating of raw food that should have been cooked.

A proliferation of reminder notes. A person who can live independently may write a note: "Take out garbage Wednesday." Someone who needs more help might leave 20 such notes around the house--and then still not do the task.

Changes in home management. Running the air conditioning in winter, or the heat in summer. Leaving windows open in the rain, or the water running.

Changes related to the telephone. Conversations become increasingly vague as memory for detail fades. The person calls at inappropriate hours, or an excessive number of times, or not at all.

Handwriting deterioration. As Alzheimer's progresses, writing ability fades.

Wandering. You find your loved one walking up and down the street,unable to recognize home. Or neighbors or the police call you about your loved one's wandering.

Once you make the decision that your loved one can no longer live independently, you must make the arrangements, because the affected person cannot. For family members who must manage this from a distance, the challenges are enormous. Contact your local Alzheimer's Association affiliate and the one closest to where the affected individual lives. Together, they can help connect you with resource people, organizations, home-care agencies, and supervised living facilities.

For a while, it might be possible to manage the affected person with live-in help. This may be a good option in the early stages of the illness, when the person still has enough cognitive function to resist moving out. But as Alzheimer's progresses, and round-the-clock care becomes necessary. You might decide that the affected individual will move in with you, refer to Preparing To Be A Caregiver.

But no matter where the person moves--in with you or into a supervised facility--expect the transition to be rocky.

Involve the affected individual as much as possible in planning the move. If the person refuses to move, it doesn't help to negotiate. Simply proceed, with gentle reminders that there is no other alternative. It's normal for caregiving loved ones to feel guilty, ashamed, anxious, and depressed about moving a loved one with Alzheimer's, especially if the person is nasty about it. Remember: You are not abusing or abandoning your loved one. You are doing the best you can to cope with a horrible disease.

Expect transition problems. Changes are upsetting to many people who have full control of their mental faculties. Changes tend to be even more upsetting to those with Alzheimer's disease. If the person has moved into your home and has significant adjustment problems, don't face the situation by yourself. Get help. If the person moves into a nursing- home, staff are used to transition difficulties and can handle them.

Over time, as the illness progresses, attachments to former surroundings fade.

Darwin Connor (c) copyright 1995


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