It is a universal, fundamental, and historical fact that people want to live and die in their own homes. No one ever says, “I can’t wait to move into a nursing home!” Sadly, however, most people do not have the financial means or family support to ride out the course of Alzheimer’s disease at home. Devoted spouses and altruistic children pinky-promise-swear that they will never let that unspeakable thing happen. And while they cling to that promise well past the point of logic and reason, a breaking point is inevitably reached… and it feels like an enormous betrayal.
In the early stages of Alzheimer’s, strategies can be implemented to manage a person’s deficits. Memory aides like speed dial, pill organizers, and lifeline alert systems alleviate some risk and promote independence. Personality changes can make strategies difficult to implement due to resistance and denial, but sometimes the threat of “placement” is used to persuade the person into compliance.
I always share one tidbit of information with the caregivers of early stage dementia family members: the early stage has one great advantage over the next few stages as the disease progresses- the ability to learn. It is only at this time that a person placed in an assisted living facility, group home, or nursing home will have the ability to learn their environment, learn who can help them, and learn how to access help. If you know that a move will occur, but just are not sure when the time is right, I usually suggest sooner is better than later. Sooner allows for relationships to be formed and routines to be established. Sooner provides an opportunity to build a quality of life. After a sometimes rough and rocky adjustment period, early-stagers do settle in and make peace with their circumstances- to some degree at least. And the burden of care being shifted from family to facility alleviates many stresses from the caregiver’s plate.
People moving through the middle stages of Alzheimer’s are the most frequently institutionalized group. Behaviors such as wandering, rummaging, and incontinence mismanagement become too overwhelming for many family members to manage. The paradox of commitment and exhaustion further erode a caregiver’s best intentions and promises. Most placements occur after a hospitalization or rehabilitation stay, when the decision is more easily made.
The silver lining of the middle stage of dementia with respect to major life transitions is the short term memory loss. I frequently remind caregivers that although the decision is difficult and painful to make, the Alzheimer’s person in the middle stages will usually lack the insight or awareness to know exactly how or why the change occurred. Familiar items, old photographs, and other comforts of home may be enough to put everyone’s anxieties at ease.
Sometimes caregivers need permission to make changes to circumstances they never anticipated facing, and an outside such as a therapist, social worker, or physician can be that person. Eventually, a catastrophic event such as an illness or fall will facilitate the move.
Just know that there is never a “good” time to move a loved one into an aggregate living environment. It will always be difficult. Change is inevitable in life, and Alzheimer’s disease is just another example of that certainty.