7 Ways to Advocate for a Loved One in Long-Term Care
Tips for responding to common issues that may arise
(This article appeared previously on Caring.com.)
Many older adults live in a long-term care facility — whether it’s a nursing home, rehab, assisted living or board and care. Advocating for your loved one in a long-term care environment can feel like navigating a maze, especially if you don’t live close by.
To help you and your loved one find the best care possible, here are some tips for being an advocate and addressing commonly occurring issues in older adult communities:
1. Your loved one wants to move out of assisted living or the nursing home.
Moving into an older adult community is a major adjustment. It’s not uncommon for those who recently moved to want to move out as soon as possible. Most likely, they had been living in their own home for years and would have stayed there if they could. Downsizing to a room or a small apartment in a place where they probably don’t know anyone can be really difficult.
Tell them to give it three months’ time and then see how they feel, says Lynette Whiteman, executive director of the nonprofit Caregiver Volunteers of Central New Jersey. “Reach out to staff. They want you to be happy,” Whiteman explained. Work with the administrator to help find something or someone to help ease the transition.
Often, finding just one friend to talk to can make all the difference, Whiteman says. Having a buddy to complain to and eat with in the dining room can make life so much better, she added. Breaking into well-established cliques in the new setting can be hard. “Just one other person who’s a friend gets them over the hump,” Whiteman said.
2. You don’t live nearby and can’t visit your loved one as often as you wish. How do you advocate from afar?
It’s difficult, but not impossible, says Bonnie Friedman, author of Hospital Warrior: How to Get the Best Care for Your Loved One. She recommends starting with an in-person visit and establishing contacts with staff.
“If you can, stay in close contact with your friend or relative and follow up regularly with scheduled calls with the staff,” Friedman says. “It is important that staff members know when to expect your calls, and you want to be sure you are communicating with those who have direct knowledge of the situation and circumstances.”
Make return in-person visits when possible. And if you have a relative or friend who can visit the facility, ask him or her to do so. If you’re still concerned, you can hire a professional to visit and report back.
“Elder care managers, geriatric case workers, nurses and social workers are all good possibilities for providing such service. Do your homework to make sure you are selecting someone you can really trust,” Friedman says.
3. Things seem to be going OK, but you sometimes wonder about how much care your loved one is actually receiving. How can you get a better sense of what’s really going on?
You notice a few issues, such as staff often on their cell phones or undergarments/diapers that could be changed more frequently. What do you do?
Visit often and at varied times. For instance, don’t always show up at 5:30 p.m., if possible. Try stopping by at lunch or in the morning before work to get a better picture. And if you notice a troubling pattern or problem, say something. Staff knows which residents don’t have visitors or advocates, and sad as that is, those elders can fall through the cracks.
Build relationships with staff and stay positive until you have to change course. Think of it as a team effort. You’re all on the same team, until someone drops the ball.
If there’s a serious problem — say your loved one fell and staff failed to notice or the resident is not receiving his or her medications — and you’ve tried talking to the assisted living director or director of nursing, take it up with the executive director. You can also consult with your local long-term care ombudsman. If all these steps are fruitless, it may be time to consider looking for a new facility.
4. What if my loved one has dementia and may not be able to articulate what’s going on?
You must be your loved one's voice, says Lauren Bond, director of client services at Care Is There.
“Your loved one may not speak up about problems that seem obvious to you,” Bond says. “For example, a new aide may not realize that Dad wears glasses and doesn't put the glasses on Dad when he gets up in the morning. Dad doesn't, or can't, ask for them. He may resign himself to the situation and have a lousy day. Or he may act out his frustration, which could lead to other problems.”
Again, it’s important to visit at different times of the day as staff changes during a 24-hour period.
“You will have to share information about your loved one again and again as new people come on,” Bond advises. You can also call the facility periodically. But keep the conversation “focused, brief and positive because the staff are extremely busy, and you don't want them to dread your phone calls!” Bond says.
Sharing personal information about your loved one is also helpful. Bond tells the story of a resident in memory care who had served as a town mayor in his younger days. “Occasionally, he would get agitated or upset; the staff learned that if they addressed him as Mr. Mayor, his disposition would visibly change. He assumed a calmer, professional demeanor of a mayor, and everyone avoided any trouble due to his agitation,” Bond said.
5. I’ve been talking with other residents’ family members. We see common problems that don’t seem to be improving, although staff says they will fix them. What can we do?
Organize and advocate together. Join the family council and if there isn’t one, start one.
Federal legislation from 1987 guarantees families of nursing home residents a number of important rights to improve a loved one’s experience. Among them is the right to form and hold regular private meetings of an organized group called a family council, according to The National Consumer Voice for Quality Long-Term Care. Facilities that accept Medicare and Medicaid payments must provide a meeting space, cooperate with council activities, and respond to group concerns. Additionally, some states have laws that provide similar rights for the families of residents living in assisted living facilities.
6. What can I do about my difficult family member? I love her but know she is challenging and mean to staff.
This is not easy. You could try talking with her, but if she is very ill or suffering from dementia, you may not get anywhere, says Friedman.
“I would definitely speak with the staff about the situation; chances are, they have encountered difficult patients before. They might even have some suggestions for you,” Friedman says. “Be sure to let the staff know you are concerned and want their feedback.”
Writing thank-you notes to staff who do a good job, sending letters to supervisors praising staff or sending baskets or trays of cookies or other goodies can make a difference.
7. What do I do if I believe there is abuse or neglect going on? Whom do I contact?
No one wants to be faced with this. Still, the reality is that elder abuse and neglect do occur in facilities. One option is to contact your local long-term care ombudsman program.
Ombudsmen act as advocates for residents of nursing homes, board and care homes and assisted living facilities. Their services are free-of-charge, confidential and available in all 50 states.
Another place you can look for guidance is the National Center on Elder Abuse, a resource center dedicated to the prevention of elder mistreatment. Additionally, each state has state agencies that oversee long-term care facilities; they may be within the department of social services or department of public health.
If you believe a crime has been committed, contact your local law enforcement agency right away.
Even when your loved one resides in an older adult community, your role as a caregiver is still vital to his or her well-being. Being an effective advocate will help both you and your loved one sustain a greater quality of life long-term.