Last week I was giving a speech about how to successfully age in place and avoid a nursing home for as long as possible.

During Q&A, a woman asked me about her rights to question a nursing home’s actions without suffering repercussions from the questions. It’s unfortunate that anyone would feel the need to even ask about how to avoid repercussions in a nursing home setting.

“Repercussion” implies there is some type of negative fallout. The possibility of being punished should never be a risk for somebody in long-term care when advocating for themselves or for a loved one.

In this woman’s case, her mother was treated roughly by a nurse when protesting that she did not want to get up at 6:30 AM to get dressed. The mother explained to the nurse that she likes to sleep later but the nurse explained to her that keeping a tight schedule was her priority. The argument escalated to an extent that other staff became involved to protect the mother. The nurse was not fired and when she was next assigned to the mother, she threatened the mother with revenge. The only response that should have come from that nurse was a profuse apology. If she wasn’t capable of apologizing, she should not have been reassigned to the mother. And the administration should have taken a firm stance on that. Unfortunately, the mother and her adult children live in fear for their mother’s safety and are reluctant to complain while they put their mother on waiting lists at other long-term care communities. (And, yes, I think that nurse should have been fired after threatening the resident.)

Long-term living communities are generally filled with truly compassionate employees.

When you think about what type of person is drawn to working in long-term care, it is generally a person who has a lot of concerns for the comfort of others and especially older people.

Working in a nursing home or an assisted living community is stressful. Often the people you’re taking care of are in a state of decline. Many eventually die on your watch. Unreasonable demands from well-meaning families can be draining. And staffing shortages combined with high patient to staff ratios can lead to fatigue and burnout in time. It’s entirely possible that a superstar nurse with great ambitions to make a difference in the world can start working in a nursing home full of hope and then become quickly mired in dissatisfaction and frustration because of the aforementioned causes. In plain English, not everyone is cut out to do the job and some stay in that line of work much longer than they should. Family members who complain to these employees can find deaf ears that do not care about their complaints. If that is the case, concerned family members should ask their questions or log their complaints with an administrator. And they most definitely should speak up if they have had any problems with a staff member.

In a good long-term care community, the administrator should value the family members, encourage their presence in the community, and welcome their feedback as a way of monitoring the patient experience and problems that they might be unaware of. The only way to fix problems and bring about change is to be cognizant that there is a shortcoming in the first place. So feedback is valuable. However, it is not unusual for family members to have unreasonable expectations of what the nursing home staff can do given their employee to patient ratios and given the regulations that are strictly enforced and monitored by each state. Family members who complain frequently can be wearing to administrators, too. It takes a lot of people skills and patience to deal with the family members and juggle all of the responsibilities that come with being administrator. Sadly, not every administrator has the necessary skill-set. Some administrators forget that the nursing home is, in fact, a home, and not a large office building with demanding people living in it.

If you find yourself needing to advocate for a loved one or yourself, you should get the impression from the staff and the administration that dignity and well-being are valued.

This should be part of the overall culture of the long-term care community. It does not mean that you will get your way on every issue and you should not expect that the overall health of the community, which includes employees, will be sacrificed for you or your loved one’s happiness.

What should you do if you feel like you have a situation that needs to be addressed in a long-term care community?

Here are a few steps you can take but it is important to ask yourself first if your complaints are valid. You don’t want to become one of those family members who is unreasonable and complains about every minor issue. If the blankets aren’t soft enough, bring one from home. If you are unhappy that there isn’t enough steak on the menu, bring takeout.  If you feel your loved one needs more one-on-one attention, you should consider hiring a private aide. Try to keep your complaints focused on matters that truly affect a person’s quality-of-life, dignity, and well-being. If your concern falls under one of these three areas, here is what you can do.

  1. Speak up. It’s important when you see a problem or experience any type of injustice that you say something immediately to the nurse in charge. The nurse might be unaware of your problem and may be able to help you quickly. Give the nurse a chance to solve it. When he or she does, be sure to say thank you.
  2. If you do not see satisfying results from the nurse, you need to contact administration and let them know that you have a problem. Try to avoid threatening the administrator with legal action or leaving the nursing home for another community. First try to see if you can’t arrive at a satisfactory solution together.
  3. If the administration is unable to help you, contact the local ombudsman. It’s the ombudsman’s job to come in to the building and assess all sides of the problem to try to reach a solution. They are generally very knowledgeable people and are capable of taking an objective view.
  4. Because the ombudsman has no authority over the nursing home, you may need to file a more formal complaint if your problem is particularly severe and the ombudsman cannot help. You can contact your state Department of Public Health. For problems with a Medicare facility, you can contact your local Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO).
  5. If all of your efforts fall short, consider shopping for a new long-term-care community that better fits your ideals.
  6. If another nursing home is not an option, for whatever reason, show up as often as you can. Staff are usually aware of those families that are the most involved and it can help to build a bond with your loved one. When you visit, be pleasant, be openly appreciative of caring employees, and bring treats once in a while. Busy nurses who have to skip their own meal time will be especially grateful for the latter idea. Your efforts can go a long way toward a more positive experience for everyone.

Being an advocate for somebody in long-term care is an ongoing job.

It is a tremendous responsibility. The long-term-care community also has a lot of responsibility and has to work within a lot of parameters to meet everyone’s needs. You should not feel that speaking up is going to cause harm to you or your loved one. If you find that to be the case, you are definitely in the wrong community and you need to take steps as soon as possible to find a new home or a way of dealing with that community that brings quality care to your loved one.

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