Become Your Loved One’s Best Advocate
by Amy Natt, MS, CMC, CSA
Q: My brother lives in a care facility about an hour away. We try to go visit him once a month, and each time we do, he seems to be declining. We always find him in his room, often asleep in his chair. We ask him if he would be more comfortable in his bed, but he says he does not want to bother the staff. Other times he is soiled because he couldn’t get to the bathroom in time. We keep encouraging him to ask for help, but he seems reluctant. Do you think we should be concerned?
A: Older adults are often reluctant to ask for help for a variety of reasons. This may or may not be a direct reflection of the environment. It is great that your brother has you as an advocate and you are correct to pay attention to any red flags.
I would try talking more with your brother about the reasons he does not ask for help. He may feel that he is bothering the staff, and he may need your reassurance that they are there to help him. The staff may also need to be made aware that he would like to lie down after lunch or that he is having accidents. They may be able to implement a toileting schedule or other routine to help him get the assistance without having to ask for help each time.
There may be cognitive issues that prevent him from verbalizing his needs. Is there a call system, and does he seem able to use it correctly? Is it in reach when he is sitting in his chair? Is his mood generally positive, or has he had difficulty adjusting? Has he been assessed by his medical provider for possible depression?
Some people also have a fear of retaliation. This may be based on a reaction they received when asking for help in the past, or something earlier in life. Either way, it is good to try to get to the root of the fear. He may be worried about the staff reaction if he is disrupting their routine or requiring too much assistance. He may have had a bad experience in the past. It is always a good idea to visit at different times and observe how the staff interact with your brother and with other residents. Is he always reluctant to ask for help, or is there a particular person he is avoiding? Does he have a roommate that he could be having an issue with? Is this a lifelong pattern or something new? Are there any other signs or unexplained behaviors that you have noticed?
If you see something that concerns you, request a meeting with the person in charge to discuss these concerns. The staff may have concerns of their own specific to your brother and ideas that would help increase his interactions. Depending on the level of care he currently receives, he may be concerned that asking for help will trigger a change to the next level. For example, moving from independent living to assisted living, assisted living to skilled nursing or into a memory care unit. Fear of change can cause a person to resist help, even when they need it. Your job is to try to find out if that fear is legitimate or if he simply does not like asking others for help.
If you continue to see red flags and the facility administrator or social worker is not able to help you address those concerns, you can always call the ombudsman or community advisory committee for your area. This is a person through the state’s Division on Aging that serves as an advocate for residents in long-term care settings. You can contact your local health and human services office or the main office in Raleigh to get the appropriate contact by calling 919-855-4800.
Finally, you can consider hiring a private care manager to help advocate for your brother and work with the care facility to ensure all his needs are met. It can be helpful to have an extra set of eyes and a professional opinion to sort through the variety of issues that may be going on. This can also be beneficial if you are going to be out of town or unable to visit for a few weeks. A great resource is the Aging Life Care Association at their website, www.AgingLifeCare.org .
Continue to be your brother’s advocate and keep notes regarding any specific concerns, dates and what you observed. You will find that the majority of staff are ready and willing to help but may need some direction or suggestions as to how they can better meet his needs. Get to know the staff and help them get to know your brother, his likes, dislikes and reluctance to seek assistance.
If you can’t be there in person, call to check on him and consider getting other family members, friends or a professional to go by and visit. Adjustments late in life can be challenging, so continue to help him navigate this transition and offer your support.
Natt, an Aging Life Care ProfessionalTM, certified senior advisor and CEO of Aging Outreach Services, can be reached at email@example.com