Summary:
The author recounts their experience of volunteering to help a legally blind 95-year-old woman who had no family or friends left. The woman was in the care of Adult Protective Services due to a caregiver misusing her credit card. After a fall, she was taken to a nursing home rehab facility and now, at 100 years old, she remains bedridden and blind. The author is unable to legally assist with her bills or advocate for better services. They consider whether to tell her that she will never return home, questioning if this will diminish her will to live. The nursing home’s refusal to communicate exacerbates the situation. The author seeks advice on how to navigate this ethical dilemma.
Additional Piece:
The author’s story highlights the challenges and ethical complexities of caring for older adults who have no family or support system. It sheds light on the lack of autonomy and agency faced by many seniors who are under the care of nursing homes or conservatorship agreements.
Elder care, particularly for those without relatives, calls for more compassionate and dignified solutions. Society often resorts to conservatorships or guardianships, but these measures can strip individuals of their autonomy and basic rights. This raises questions about the balance between protection and self-determination.
In the case of the blind 100-year-old woman, the denial of contact and pertinent information by the nursing home only exacerbates the distress and uncertainty she faces. It is crucial to ensure that older adults have adequate channels to voice their preferences and concerns, and that there are advocates who can support them in navigating complex systems.
As a society, we need systemic reforms that promote more humane and respectful care for the elderly. Policies and practices should prioritize the well-being and agency of older adults, allowing them to age with dignity and maintain a sense of purpose and control over their lives.
Moreover, individuals can play a role by advocating for the rights and well-being of older adults in their communities. This can involve supporting elder abuse centers, participating in advocacy groups, and engaging with long-term care ombudsmen who act as advocates for residents. By amplifying the voices of seniors and shedding light on their experiences, we can collectively strive for a more compassionate and just system of elder care.
Keywords: elder care, autonomy, conservatorship, guardianship, dignity, systemic reform, advocacy.
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Five years ago, I began volunteering to pay the bills for a legally blind 95-year-old woman on public assistance. The job involved handling paperwork that clients could no longer handle on their own, allowing them to stay at home. I found out that this woman had no family or friends left, and she came to think of me as her only friend. During the time I was with her, she was also in the care of Adult Protective Services (APS), because one of her caregivers was using her credit card fraudulently.
Last August, he fell out of bed in the middle of the night. A caregiver found her the next morning and called her 911. She was taken to the hospital, treated, and then sent to a nursing home rehab facility. After 100 days, according to her insurance, she was now considered a long-term patient.
She is now 100 years old, blind, and lying in bed 24 hours a day, except when I visit her and wheel her out to the yard. She is in an unknown place and hears screaming, crying and cursing all night from other patients. She is relatively lucid despite the circumstances, and the only thing that keeps her alive is the hope that she will soon be able to return to her small studio apartment, a place where she has lived for 50 years. She has said that she wants to die if she can’t come home.
Because she was protected by APS and is now under a conservatorship agreement under the care of the nursing home, I can no longer legally pay her bills or take care of any paperwork. This has meant that her rent has not been paid, and eviction proceedings are underway. I tried to list myself as a contact for her, so I could at least advocate for better services, but found myself in a very frustrating Catch-22 situation. The nursing home has deemed her incompetent and therefore cannot name me as a contact. I requested that she be re-evaluated, because I don’t think she is incompetent, and the response was that only her contact can make that request.
My question to you is: Do I tell him the truth, that he will never go home? Will taking away that hope make her give up her will to live on it? And her willingness to live off of it should be based on a false premise? The nursing home social worker won’t even talk to me, because I’m not a legal contact, so the decision to tell her the truth is up to me; she has no one else. — Name withheld
From the ethical:
This story is heartbreaking and, I’m afraid, all too common, as “no relation” older adults are growing in number. All sorts of factors play a role, some benevolent. These include an attitude toward elder care that puts security before freedom, and the well-intentioned use of provisions, such as the guardianship process, that deny people their autonomy.
Nursing homes aren’t always affected by financial incentives, either: the hundred days of rehab that Medicare can cover at the most, followed by Medicaid-funded long-term care that, at a lower rate, still maintains a full bed. . Petition to have patients considered disabled, with guardianship assigned to a third party, it can also facilitate the collection of invoices. What’s unusual here, I suspect, is mainly that you’re here to bear witness to it.
There may be an institutional temptation to keep it in the dark to make it easier to manage. But it’s her life. You have the right to know as much as you can understand about what is happening to you and the right to respond accordingly. First though, make sure you’ve exhausted your options.
You can try to relay your concerns to a long-term care ombudsman, who, under federal law, acts as an advocate for residents. Her state probably also has an elder abuse center and elder advocacy groups she could check out. This woman simply wants to live out her days in her own home. That shouldn’t be too much to ask.
However, their options and yours are woefully limited. There is a need for systemic reform here. “We are willing and able to justify radical measures like conservatorships too easily, and we still don’t have more humane and dignified solutions,” said Laura Mosqueda, an expert on elder care and abuse at the Keck University School of Medicine. from Southern California, tells me about cases like the one you describe. As our bodies and minds become fragile, conflicts arise between protecting ourselves and respecting ourselves; institutional arrangements designed to save us from misery may end up inflicting it.
readers respond
The question in the previous column was from a reader whose babysitter had informed her that a close friend was mistreating his own babysitter by underpaying her, withholding food, and not delivering promised benefits. Our reader wondered what his ethical obligations were in this situation. She wrote: “This friend introduced me to her circle of friends a few years ago, and it is thanks to her that I am part of a great group of women. Should she step in and risk even worse behavior towards her babysitters and create a rift in her circle of friends? Or do I say nothing and carry on with business as usual?
In his response, the ethicist noted: “If you bring up what you heard with your friend, she will know that her babysitter has been complaining about her and she may retaliate. Since her nanny is vulnerable here, make sure that whatever she does meets with her approval. …If she doesn’t want you to talk, you could wait until the next transition. If that’s not going to happen soon, you may feel like you need to distance yourself from your friend without saying why. Abusive behavior makes someone unattractive company.” (Reread the full question and answer here.)
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you want to look on the contrary, knowing that this person is abusing his power over his employee? If your friend gets mad at you for talking, say more about her. She should be able to live with a smaller circle of friends who treat all people with dignity, rather than a larger group that doesn’t. — Richard
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I appreciated how the Ethicist responded to the greater possible legal ramifications of the plight of nannies and other domestic workers, as they are a group often overlooked due to classism, racism, sexism, and the isolating conditions of the job itself. His advice was sound about going through the sitter before taking any action to avoid unwanted retaliation. — Courteney
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The ethicist’s advice Not jeopardizing the current nanny’s job is very important. This work, despite the alleged abuse, can be a critically valuable source of income. Waiting to bring it up until the next “babysitting transition” is a good idea. At the very least, it is essential to get the approval of the current nanny. — Thomas
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The author of the letter could talk to your friend about how much you value and appreciate your own babysitter and how protective you feel of her. She could give examples of different ways babysitters are exploited and share her disgust that people behave so horribly and unfairly. This would serve the same purpose of providing a moral compass without risking the career of the friend’s nanny. — deborah
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This is an opportunity for help your entire circle of friends appreciate the importance of how we treat those who have less power than us. You can provide other examples and prevent her abusive friend from specifically tracing this back to her and her babysitter. The goal is for her to see that you and all of her mutual friends find her own behavior inappropriate. — John
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