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The Ribbon - Care for Caregivers

Saying Goodbye 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. 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.

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