Loved Ones of Long-Term Care Residents: Not a Burden!

As someone who has a loved one in Long-Term Care, I have personally experienced bias and discrimination in the way our loved ones are treated and the way we, as family members, are often viewed by society and especially by the Long-Term Care Industry. This industry includes facilities, regulatory agencies, healthcare workers, politicians, lobbyists, and even some advocacy groups.

The majority of us speak for our loved ones and we are their voices, as many can’t speak for themselves. Only a small minority of family may be taking advantage, yet we seem to be treated like we all are the enemy or that we don't matter—acting as if we gave up that right to speak for our loved ones. We didn’t! The Ombudsman Program is an example, as they are set up to view family as the adversary. I called them recently to ask them to help mediate communication between family and an Administrator, yet they can’t help me because they only work with Residents, even if I am Power of Attorney. Staff has said to me “we know better” yet they call me all the time to calm my mother down, as I am the only one who seems to be able to that because once again, I know my mom better than anyone.

We are often looked down upon and judged for not being able to or who choose not to provide care for our loved ones at home. This is particularly true for those of us who are vocal advocates for our loved ones and who speak out about the deficiencies in the care they are receiving in Long-Term Care.

I have personally encountered staff and management in Long-Term Care facilities who have said things like "If you don't like what we're doing, take your loved one home." This is not only hurtful, but it is also intimidating and retaliatory. It makes me feel like I am not being heard and that my concerns are not being taken seriously. It is particularly troubling when this attitude comes from those who are supposed to be providing care, such as facility administrators, social workers, ombudsmen, and doctors.

I believe that one of the reasons we are not taken seriously is because we are seen as a nuisance or a burden. The Long-Term Care industry is focused on profit and they see family members as an unnecessary appendage. They may sell the idea that family is an important part of the care process, but in reality, we are not welcomed or made to feel comfortable. Our knowledge and advice regarding our loved ones is not considered - often ignored when we are the ones who know them best.

I am deeply passionate about this issue, and I will continue to speak out and advocate for better care for our loved ones and for the recognition of the value of family in the Long-Term Care process. This is a complex and emotional issue that requires more attention and discussion. It's time for the Long-Term Care Community to recognize the role and importance of family and to treat us with the respect and dignity we deserve. We deserve and need a seat at the table. We are essential to the care of our loved ones wherever they are - if we choose to participate.

Facilities choose to ignore Powers of Attorney and Conservatorships but nothing is being done about it. This was always going on but became much more evident during the pandemic. I love, care, and want what is best for my Mom, and I didn't check my feelings nor rights at the door of the Assisted Living facility - no matter what anyone thinks.