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The decision to place a loved one in a care facility may be the hardest decision families have to make in the course of caregiving. “I remember the ache in my heart as I left my father in the nursing home the day he moved there. And the ongoing conflict I felt when I visited him every week. Caregiving doesn’t end when you move someone, it just changes,” says a caregiver.
How does one make such a decision? What should one consider?
Sometimes circumstances dictate the decision, for example, a caregiver gets sick and is no longer able to provide care. Or the care receiver breaks a hip and needs more care than can be given at home. This can make the decision a little easier because the situation decides for you.
At other times the decision is made because the caregiver is burned out, not sleeping, or finances demand that nursing home placement is the only option (Medicaid and Medi-Cal criteria for a nursing home are different than those for help at home). Often caregivers feel guiltier when they make the decision under these circumstances. Everyone has their own turning point.
In making the decision about placement, caregivers balance their emotions with objective practical information. Both play a role in when and how the decision is made. It is a process of balancing the positives and negatives for the primary caregiver and the care receiver.
Finances always play a role in this decision. A discussion with an attorney will help sort out estate planning for Medicaid or Medi-Cal eligibility in case a nursing home is necessary in the future. (See FCA’s fact sheet Legal Issues in Planning for Incapacity for more information).
Research shows that the main reasons one places a loved one in a facility are: need for more skilled care, the health of the caregiver, dementia-related behavior problems, need for more assistance, or depression in the care receiver. When the demands of caring are high and the caregiver’s feelings of satisfaction are low, you are more likely to consider placement. Caregivers who get help early in their caregiving careers and have support from community, friends and family—especially with overnight help and activities of daily living—are more likely to delay out-of-home placement. Getting counseling and/or attending support groups may help caregivers keep someone at home longer.
When a caregiver has a conflicted relationship with the care receiver, the decision to move is harder. Those with a more mutual or better understanding with the care receiver will experience less guilt and other negative emotions, knowing the decision is in the best interest of the care receiver and themselves.
It is easier to make this decision when the whole family is involved, because then it is a joint decision (see FCA’s fact sheet, Holding a Family Meeting). The earlier in the disease process that these issues can be discussed, the easier it will be to make the decision when the time comes. It’s better to make a decision when it is not made in crisis mode.
Promises to never put someone in a nursing home may need to be modified because when such promises were made, you didn’t know what the situation would be in the future. The best promise you can make is: “I will do my best to give you the best care I can throughout your illness.” This allows you to make the “right” decision as circumstances dictate.
Part of gathering information is discovering what the options are, the costs, and kind of care provided. FCA’s Fact Sheet, Residential Care Options, is a beginning guide. Your family consultant can also refer you to resources to help you define the level of care you need and your options in the community.
Taking the time to visit facilities will help you decide which one is right for you and your loved one. When making a visit, be prepared to deal with a flood of emotions. It can help to invite a friend or family member to go with you. Debriefing afterward will help you integrate your experience of the facility and your feelings about the place.
California Advocates for Nursing Home Reform, or CANHR (www.canhr.org) has many fact sheets to help guide you through the evaluation of facilities and what to consider in making your decision. In particular, read “Self Assessment for Community Services and Out of Home Placement.”
For many of us, moving a relative from home is the last decision we want to make. Too often, caregivers continue to provide care far beyond their physical and emotional capabilities before they even consider long-term placement of their impaired relative. It is difficult to accept the truth about our own humanness and our own capabilities. It can be hard to admit that we are powerless to make our loved ones feel better or to change the course of the disease. The truth is, no matter how much care we provide or how much of our own lives we neglect, our loved ones will never be the same.
The most common emotion when placing a loved one is guilt. Guilt means you did something wrong. Placement is not “wrong,” but one of the hardest decisions that one ever has to make. It takes a lot of courage. We can change the “guilt” to “regret” by understanding that it is the circumstances of a terrible disease, a difficult care situation, and a need to take care of ourselves as well as our loved ones. With all of these emotions comes grief, the loss of the person who was, the loss of what we vowed to do for a loved one, the loss of our role as the primary caregiver. Healing comes from allowing ourselves to feel the loss, experience the sadness and get support for our decisions. Your family consultant can help you as a resource, for emotional support and for advanced care planning.
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