“I feel the responsibility is more on the families than the long-term care system. Too many families abandon their loved ones to the system,” commented Ethelle Lord in response to my post “Elder abuse in long term care facilities needs to be researched now if not sooner.”
I respect Lord’s opinion. However, I also respectfully disagree. It’s easy to point the finger and blame adult children and other family members for “dumping” aging parents and family members in long-term care facilities and leaving them there to languish alone. Because of the stigma and myths associated with the disease, it’s even easier to lay blame when the people in question live with dementia. It’s true that countless long-term care residents go for months, sometimes years, sometimes forever without visitors, and not a soul to advocate on their behalf. But are families the ones at fault? And is it useful to point fingers?
Here are some of the reasons older people are “abandoned:”
- many families place aging parents in long-term care facilities after having cared for them to the point of exhaustion; placement is a bid to save their own lives. Here’s one example: “I have kept my mother in law at home with me and my family for 17 yrs. She is basically bed bound now and requires 24/7 assistance with all daily needs. For the last 3 yrs I have literally stayed in the house with her. I am tired, worn out, and frustrated because no one will give me any relief.”
- many families are forced to place loved ones in long-term care because they are financially, physically and/or emotionally unable to care for them even though they may want to. Some don’t have the skills, some live too far away, others are “sandwiched.” The decision to place their loved one in care is devastatingly difficult to make; it rips their hearts out, but they feel they have no choice.
- some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life, neither society nor government has the right to judge or govern that choice, any more than we can tell people whether or not to have children.
- some parents do not wish their families to care for them, they don’t wish to “be a burden;” and they prefer to be placed in long-term care. I have informally asked scores of people whether they would want their children to care for them as they age. Many say definitely not, particularly care partners in online dementia care groups who say they would not want their children to care from them as they have cared for their parents.
- some families are estranged; they don’t want to be in contact. They just don’t like each other, plain and simple.
- some elderly people do not have children or extended family, and they end up alone as a result.
- some adult children who wish to care for their aging parents are precluded from doing so by other family members, agencies or guardians who have legal control. Sometimes their loved ones are moved without their knowledge, or access is restricted or denied in some way.
- some family members are forced by social services or other agencies to place loved ones in care even though it is against their loved one’s wishes as well as their own.
- some family members are unable to visit their aging parent after placing them in care because they are overwhelmed by guilt, can’t bear to see their loved one suffer, or think it doesn’t matter because their loved one doesn’t recognize them anymore, etc.
- some families implicitly trust long-term care providers and believe their loved one is better off in an institution; they see no need to visit, supervise, or advocate.
- some long-term care facilities prevent family members from seeing their loved ones, particularly if the family members criticize care practices, demand change or aggressively advocate for better care. Jenny Moore, the founder of YourVoiceMatters.org.uk, for example, was banned from seeing her mother-in-law for three years after being “a habitual and vexatious complainant” because she voiced concerns about her mother-in-law’s care. Her case, while extreme, is not unique. In this way, some long-term care facilities hold their residents “hostage” with family members powerless to help them.
- And sadly, some family members place aging parents in facilities for selfish reasons such as wanting to preserve their inheritance. To these people, having their parent’s money after they die is more important than providing them the possible best care while they’re alive.
I was fortunate to be in a position to be able to care in various ways for my mother who lived with dementia. While I chose to do so, I don’t believe adult children are obligated to care for aging parents unless they have a legal responsibility to do so in which case they should fulfill that responsibility or cede it to someone else who will. I believe the overall responsibility for eldercare rests with society in general, the healthcare system in particular (doctors, nurses, healthcare workers, social workers, relevant professional organizations, etc.), government (law makers, law enforcers, regulators, ombudsmen, etc.), long-term care providers (including management and care workers at all levels), and family members who wish to be actively involved.
Regardless of how we collectively decide to handle eldercare moving forward, I believe it’s imperative that we treat our elders with more respect and humanity than we do now.
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