There are many different theories regarding the emotional impact experienced by caregivers when placing a loved one, especially one who is living with dementia, into a long-term care facility. Some people feel that this may alleviate the stress experienced by a family member caring for someone with cognitive memory impairment, however, others worry that there may actually be a significant increase in the feelings of guilt when transferring someone into a long-term care facility. In a recent, multi-site study  published in the prestigious Journal of the American Medical Association (JAMA), there has been strong evidence showing that the latter may be true, with caregivers suffering additional emotional trauma following the decision to place the person they care for into a facility.

Results of this four year study come from comprehensive analysis and data collected by the University of Alabama at Birmingham, documenting the negative emotions that caregivers experienced during the transition of their loved one from home to a long-term care facility. The study also included an analysis of the decision-making process leading to facility placement, what kind of visitation or contact took place between the relatives after the placement, and the impact on the health of the caregivers following such placement.

Among the 180 caregivers who took part in the study, symptoms of depression and anxiety stayed as high in these individuals as it had been when their charge was still living at home with them. The reason for this may be because there is no sense of closure or relief when someone is placed outside the home, as is experienced when a loved one passes away. To the contrary, there appeared to be an increase of distress and depression among these caregivers. Also, facing new challenges such as having to make frequent and possibly quite distant trips to a long-term care facility, along with a significant decrease in control over the care that is being provided, can make such a transfer very difficult for everyone. Caregivers also feel guilt over witnessing the quick and steady decline in the cognitive and functional abilities of someone who is placed into a facility, and frequently blame themselves for this decline because of having placed their loved one outside the home.

The data collected on caregivers who were married to the person they were caring for showed an even higher increase of depression before and after placing their spouse into a facility. Once placement into a facility happened, more than half of the caregivers still performed some sort of physical care for their loved one during their visits. One of the most interesting findings of this study shows that caregivers who report experiencing a greater amount of burden were more likely to place their loved one into a long-term care facility, while caregivers who reported that their caregiving experience made them feel important were less likely to place a person into a facility.

The authors of this study came to the conclusion that caregivers really need to begin to receive help before, as well as after, a loved one has been placed into long-term care. Preparation for the mental and emotional well-being of the caregiver during this transition should include medical attention for depression and anxiety, along with support from family and friends. Some of the ways in which a caregiver can try to ease their guilt is by realizing that they are doing the best they can, and should it come to the point where a loved one needs to be placed into a facility, it doesn’t mean you have failed as a caregiver. There are certain conditions that you just don’t have any power over, and while the early forms of dementia may be manageable at home, it can be quite different with the onset of more severe symptoms. Most of the time, when dementia or Alzheimer’s is at its zenith, it really isn’t safe for you or your loved one not to have managed care and help around-the-clock. As hard as it may be, try to look beyond the present situation and realize that it won’t last forever - your loved one won’t suffer forever, and nor will you.

Join a support group on the Internet or in your city. It’s good to talk to other caregivers who are experiencing the same feelings over placing a person into a long-term care facility. They may have different suggestions that you might not have thought of in order to help ease the guilt over your decision about the transfer. At the same time, you might know something that others need to know, and by being able to help someone, you may feel as though you have more of a purpose.

Experts and studies alike, show that caregiver guilt usually comes from not having the control we think we should have over a particular situation. If things don’t go the way we would like, or the way we expect with a caregiving experience, we then blame ourselves. We often rely on the old “could have, would have, should have” syndrome, looking for the slightest shred of evidence against ourselves, holding us completely accountable and proving once and for all that somehow we didn’t do enough. But what all caregivers must realize is that eventually, emotions of guilt will begin to take a very heavy toll on us, and the weight of the guilt will ultimately hurt everyone involved. That’s why it’s extremely important for caregivers to set very realistic goals, not only regarding our loved one, but also for ourselves. When we don’t forgive ourselves and let go of guilt, our own health will suffer as well, and we will experience deeper depression, insomnia and other physical ailments and difficulties.

The single most important thing a caregiver can do to combat guilt is to get involved with community programs, professional resources, and support groups. Get among people with whom you can make your feelings and frustrations known, and where you can share with others who will understand your situation. Whether you decide to keep a loved one at home or you decide upon a long-term care facility, just remember one thing: you’ve given your best, and that has been good enough.   

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