The Caregiver Dilemma: When to Choose a New Care Option

A person does not turn 101 every day, especially a person with medical issues or dementia. Ruth, a two-year resident at The Margaret T. Morris Center (MTMC), Northern Arizona’s only assisted living community specializing in Alzheimer’s and dementia care, is the exception. MTMC cannot take all the credit for Ruth’s longevity and good genes. Ruth’s children decided to move Ruth to MTMC sooner rather than later, which has made all the difference in Ruth’s overall well-being.

Ruth’s children met with me just over two years ago to discuss the community for their mom. They knew deep down inside they needed to make a change for their mom’s physical care and emotional well-being. They did their research, processed the pros and cons within a week, and moved mom immediately to MTMC for her final place of care. I wish more caregivers could process these decisions sooner rather than later. We see transition success at MTMC or sister company, The Susan J. Rheem Adult Day Center. Things go smoother when people choose to accept care earlier. Unfortunately, it is typically a difficult transition or non-acceptance for care when a caregiver belabors a care decision that they know they needed to make yesterday.

Why do caregivers wait to make decisions? This factor involves caregiver guilt. These guilty feelings are overwhelming and are either self-imposed or inflicted by others. A typical guilt story goes like this: the couple has been married for a very long time and believes that the vow “’til death do us part” means providing care alone. Another common scenario is when caregivers live a distance from the aging individual and do not see the day-to-day decline. Finally, in Ruth’s story, a loved one is already in a care community but it is not the right fit. The family stresses about making a change. Often, in these situations, the loved one starts to spiral downward with difficult and dangerous behaviors, accidents and hospitalizations, making it too late for ideal care choices.

So, what can a person do for better planning for and choosing outside care at the right time?

Converse about the “what ifs” of needing care when healthy. Communicate realistically about expectations and concerns for “if and when” time comes for outside care. Too often, spouses, parents and children wait until it is too late.

Complete the Living Will and Three Powers. Make end-of-life wishes known and designate the health, financial and mental Health Power of Attorneys in writing. Take the stress off of a designated caregiver to make medical and financial decisions that may not be the choice of a care receiver and avoid costly legal fees such as guardianship. Establish a relationship with a physician. Understand Medicare/Medicaid benefits, personal finances, and Long-Term Care policy coverages.

Check out care options while the individual is cognitively capable. Tour places, get brochures and look online. Take the burden off of the designated care person from possibly having to make a choice later. Such options include in-home care, home health, adult day centers, assisted living, specialized memory care and hospice services.

Start the care journey when healthier while living at home. Start one or two times a week. Choose an adult day program or non-medical in-home care by example for an optimal transition that supports the care receiver and caregiver in being independent of each other.

Don’t belabor necessary care decisions. A full-time caregiver looking at alternate care options while caring for the loved one at home feels stressed, tired and scared. The caregiver recognizes their loved one is showing a decline, physically and/or emotionally, and at a deeper level knows they need to make a care decision versus believing “I’ll just look.” There is a reason for this saying: Guilt. Don’t let guilt feed the decision-making process. Get professional help or join a support group to help process feelings. So many caregivers will attest that they feel guiltier in the long run for not making the decision earlier if and when something goes wrong.

The proper care choices sooner rather than later enhance the well-being of the care receiver and caregiver. Take it from Ruth and her children. Happy 101st Birthday, Ruth. May you continue to enjoy life to the fullest! QCBN

By Yvonne Napolitano

Yvonne Napolitano, MHA, CTRS, is the executive director of Adult Care Services, The Susan J. Rheem Adult Day Center and The Margaret T. Morris Center.