Julie Hayes is the Editorial Assistant at Benjamin Rose Institute on Aging.
If you are a caregiver for a loved one who has a chronic disease, especially Alzheimer’s or another type of dementia, the time may come to think about moving care to assisted living. This is especially true if you do not have the resources, support or hours in your day that are needed to continue with care in the home. As beneficial to your loved one as assisted living may be, deciding whether it is right for him or her is one of the most difficult challenges you can face as a caregiver.
Once you have made the decision, you may breathe a sigh of relief in knowing that your caregiving duties are going to be shared by qualified professionals, only to come up against a host of new stressors. Studies show that the move to assisted living or another care setting can simply change the type of stressors a caregiver experiences rather than eliminate them. In fact, the level of stress you feel is likely to remain at the same level, or potentially increase, following an assisted living placement (Whitlatch CJ, Schur D, Noelker LS, Ejaz FK, Looman WJ. The stress process of family caregiving in institutional settings. Gerontologist. 2001;41:462–473).
Take comfort in knowing that there are many resources available to help you through this transition. Also keep in mind that by preparing yourself for these potential stressors while understanding your new role, you can help to care for your own mental, emotional and physical well-being. Sources of stress that may accompany a move to an assisted living facility include:
- Arranging placement. In one study, responders reported numerous sources of anxiety when arranging placement, such as:
- Deciding on a location that feels safe and comfortable for a loved one
- Ensuring ideal quality of care
- Dealing with forms and paperwork
- Being put on waiting lists
- Finding a facility on a limited timeframe (Zarit, S. H., & Whitlatch, C. J. (1992). Institutional placement: Phases of the transition. The Gerontologist, 32(5), 665-672).
- Staying involved in your loved one’s care. Most caregivers continue to remain involved in their loved one’s care following placement by:
- Visiting regularly
- Helping with day-to-day activities in the facility
- Communicating with staff members
- Being in charge of care arrangements such as insurance, finances and medication
- Feeling guilty. Even if your loved one is open to living in a facility, you may still struggle with thoughts that you have let him or her down or have not done enough in your role as caregiver.
- Handling your loved one’s emotions. While many older adults will adapt to the assisted living environment, others may become unhappy or upset as a result of the transition. If your loved one has dementia, he or she may also get confused or act out due to the unfamiliar environment.
- Being affected by conflicting opinions of family and friends. It may be the case that not everyone in your circle of family and friends is on board with your decision to make the move to assisted living. This can be especially stressful when those who are unfamiliar with your loved one’s condition or do not interact with him or her often try to minimize the need for the move or your caregiving efforts.
- Holding up under the financial burden. According to the National Center for Assisted Living’s 2018 report, assisted living costs can average about $48,048 a year.
- Meshing with staff. It’s natural to want to have a say in your loved one’s care, and it can be frustrating if the facility staff isn’t assisting or interacting with your loved one in ways that meet your expectations. It can also be hard when a facility undergoes staff turnover and someone who has been caring for your loved one suddenly departs.
A great first step toward helping your loved one transition to assisted living care is to talk openly with one another about his or her care preferences. This can give you a lot of information about your loved one’s feelings or concerns regarding assisted living. You will find out what sort of environment he or she feels most comfortable in and how involved your loved one would like you to be as care continues. This can in turn help you make arrangements in your loved one’s best interests, and to lessen your own feelings of stress, uncertainty and guilt.
If you are still feeling stressed, remember that the good news is you are not without help and resources to support you through the transition, including:
- Placement management services. These servicescan provide referrals to assisted living based on the needs of you and your loved one, and support you both through the challenging process of finding the right facility for your loved one. Use National Care Planning Council’s locator to find services in your area.
- Pre-transition counseling programs. Many nursing homes and assisted living facilities offer special programs to help your loved one adjust to life in the facility before moving there, and provide counselors to discuss concerns and answer any questions you and your loved one may have.
- Caregiver coaching programs. These programs, such as Benjamin Rose Institute on Aging’s BRI Care Consultation™, can provide support and guidance to caregivers while connecting them to community resources for further help.
- Mediation services. If the decision to place your loved one in assisted living is causing family conflict, don’t be afraid to reach out to local mediation services to help you reach a resolution. Some mediators even specialize in eldercare issues, and can offer informed perspectives on assisted living care.