The actual move is often more traumatic for caregivers than for affected individuals. You're painfully aware of what's happening, and quite possibly feeling ambivalent, guilty, and stressed. Your loved one may not have much idea what's going on.

Should you tell the person about the move? That depends on both you and the affected individual. Some caregivers insist on discussing the move. To them, anything short of full disclosure amounts to "deception" and "kidnapping." Others feel less strongly about this. Meanwhile, Alzheimer's sufferers who took an interest in nursing homes early on, or who still have enough cognitive function to know what's happening to them, often feel better about being informed. Others, who have more advanced disease may be incapable of understanding the transition, are better left uninformed.

In general, either tell people the truth, or say nothing. Don't consciously mislead by saying you're "just taking a drive," or "just going for a visit."

Some people with Alzheimer's disease resist nursing home placement, and accuse their caregivers of heartlessness. The more ambivalent you are about the placement, the more this is likely to hurt. Just remember: You're not heartless. You've made tremendous sacrifices to care for your loved one, and may, in fact, have put off the nursing home transition longer than you should have. All you're doing is what must be done.

Make sure you have the legal authority to move the person. Laws differ from state to state, but all states allow legal guardians of demented individuals to place them in nursing homes. You may need to consult an attorney.

During the actual move, take any items the person is still fond of: photographs, a radio, a favorite pillow, etc. Personalize the person's room to the extent that you can. But avoid cluttering it. Clutter may upset the person and cause problems for staff.

Visiting and Adjusting

Once the person has moved, try to visit often during the first few weeks.

Allow time for your loved one to adjust to the new surroundings. People have different adjustment periods depending on who they are and how severe their Alzheimer's is. Be patient. People adjust eventually.

If your loved one says the facility is abusive or begs to return home with you, offer understanding and reassurance (once you've satisfied yourself that no abuse has, in fact, taken place). Say things like: "You're too sick to be at home anymore."

As time passes, continue to visit. As the disease progresses, and your loved one no longer recognizes you, this may become painful, and seem pointless. However, Alzheimer's experts urge family members to keep visiting because even people with severe dementia seem to gain reassurance from the presence of family members.

During visits to a severely demented loved on, it's often difficult to figure out what to do. The person can't do much, and over time, remaining abilities fade. Consult with staff about what the person still enjoys, and do those things. Take a walk together. Share a meal. Listen to music. Or simply sit holding hands.

As the disease progresses, the affected individual may think you are someone else. Don't correct or argue. Just play along. Try to stay in the moment.

Visiting also helps you work out your own adjustment to the new situation. Initially, most people who trade daily caregiving for nursing home placement feel a combination of relief and disorientation. Alzheimer's care is so consuming that despite your best efforts to maintain friendships and other activities, you're quite likely to feel lost for a while, disconnected from reality beyond Alzheimer's care. Visits can reassure you that you're still connected to the person, and still providing some care, even as you withdraw from day-to-day caregiving.

Darwin Connor (c) copyright 1995