Some parents do a fine or at least adequate job. Some do not. For those adult children who did not have adequate parenting, there may come a time for a challenging decision: should you care for an aging parent who was emotionally absent, abusive, or neglectful during your childhood? Do you owe it to them? The emotional and ethical considerations are profound, with no one-size-fits-all solution.
Legal And Moral Obligations
Legally, most states do not mandate that adult children have to provide and pay for personal care for elderly parents. We have Medicaid and Medicare for health care. But there is no coverage under Medicare for long term care at home. Only low-income elders qualify for Medicaid-paid care in nursing homes. Moral and emotional pressures about what you can or should do may create significant psychological strain. Potential financial burdens are part of this. What are the issues offspring feel stress about when their no-so-great aging parents start to fail and lose independence?
Considerations
1. Resentment Over The Past
Here at AgingParents.com, we have met many adult children who described their now impaired, aging parent as abusive or “a terrible parent.” They relate their stories of the pain of a parent’s untreated mental illness, substance abuse, narcissism and other issues when they were growing up. There is no love lost for that parent. They struggle with whether to let a confused aging parent with dementia just go on, or whether to let go of resentment over the past wrongs and do what they think they should do for the vulnerable parent.
2. Is It Wrong To Just Let Them Be?
That is the moral question the adult children face. After all, they are mom or dad, no matter how flawed. Now they can’t take care of themselves. Do you get revenge for their wrongs by allowing them to self-neglect or be abused by others? Or do you take a higher road and do what may feel more upright and morally correct? The concept of “wrong” is a moral one. Self-judgment is involved in your decisions.
3. Can You Provide Help Without Getting Emotionally Involved?
Adult children have choices as to what actions to take with an impaired, formerly difficult aging parent. If Medicaid, a public benefit, is available and aging parents qualify under their state’s law, that parent will not be left on the streets. Medicaid pays for long term care in skilled nursing facilities. Unfortunately, the SNFs that take Medicaid for payment are typically low end, understaffed and not a place anyone wants to be. However, for millions of low-income elders in the US, this is where they spend their last years or days. For most, it’s because they can’t afford anything else and they need care no one else can provide.
Could you work with Social Services in an aging parent’s state to get them onto Medicaid if they qualify without getting emotionally involved yourself? Yes. It’s a bureaucracy. It takes patience, proof of low income and choosing a location, but these obstacles are not difficult to address. An adult child’s deep emotional involvement in the process is not required.
What if they are not low income and they have assets? In those cases, an adult child’s involvement is greater if they wish to take on that job. Choosing home care, paid out of the parents’ pockets, or arranging for a supervised environment, such as assisted living or memory care takes a lot more of one’s time. Oversight by someone is necessary no matter where they live.
4. Greatest Involvement
And then there is the question of caring for that vulnerable elder yourself. We have seen families step up, regardless of the past, and do what they feel morally or ethically obligated to do. The family cares for the elder themselves, either at the elder’s home or they take them into their own home. Some can do this. Others choose not to do this. It has risks. It’s inconvenient. Some make this happen regardless.
5. Can You Outsource The Care Management?
You can if you or your aging parent have sufficient assets to pay for a private geriatric care manager. The Institute on Aging is one example. Individuals with expertise in aging and community resources will do an in-home assessment of an elder, make recommendations, arrange caregivers, and supervise the long-term management of services. This can relieve emotionally distant adult children of having to be very involved in the day-to-day caregiving of their difficult aging parent. Generally, care managers are paid by the hour for their expertise. A word of caution: some home care agencies label some of their supervisory staff as “care managers”. They are different from what I’m describing above for independent overall assessment and supervision of care. Agency-based care managers usually do little more than schedule their own agency caregivers’ work hours and they find substitutes from their staff when a worker is sick or doesn’t show up for their shift. The term “management” in those cases is very limited.
Real-Life Examples
We have seen the spectrum of choices families of difficult elders make. Outcomes vary. Here are some cases.
Avoiding Involvement
Middle-aged financial professional (FP) had what she described as a “horrible mother.” She said she still bears the emotional scars of her mother’s abuse throughout her childhood. She’s an only child. She tried for years to get her mother, whom she clearly resented, to plan ahead and use her finances wisely. Mom didn’t listen. She ran out of funds. Did FP want to support her mother as she developed dementia and was no longer able to support herself? FP decided no. She asked her county to help her apply for guardianship for her mother, which was accomplished. Mom did get onto Medicaid. In FP’s state, a Public Guardian could be appointed to deal with all her mother’s needs. FP agreed to that and she was afterwards no longer obligated to do anything at all. The guardian alone had full legal authority over FP’s mother. FP described that it was a relief that she was rid of any tasks concerning her mother. She wanted nothing more to do with her. She felt no guilt whatsoever. This is a sad, but true story.
Fully Taking On Involvement
In another case we saw at AgingParents.com, a family of six siblings also had suffered serious abuse by their mother. They did not go into detail but we got the impression that the mother, a widow, was never good to them, neglected them terribly, and they grew up having to fend for themselves. The siblings were close and very religious. They saw their mother’s care needs all those years later as a personal moral obligation on all. Their mother, age 80, had dementia and was confused and unable to care for herself. She had no money left and they did not want to put her in a nursing home. The siblings took her into one of their homes and they took shifts caring for her 24/7. Some had other jobs and they managed to balance that while also doing care for their mother as a shared responsibility. They described their care for their mother as an opportunity to heal emotionally from the past by doing the right thing for her, even though she never did the right thing for them.
Waiting Too Long
In another matter, a daughter who had a very difficult aging mother, heard from a neighbor of the mother that she was not eating and the neighbor had not seen her for days. The mother used to go out on the front porch every day and spend some time. She had dementia, a diagnosis known to her daughter. Daughter lived out of state. Mom’s brother, age 82, was supposedly in charge. He was traveling and unreachable. Daughter, with great emotional difficulty, followed our instruction to go see her mother for herself. She got in her car and drove to Mom’s home. What she found was horrible. Mom had locked herself in a back bedroom and had not eaten nor cared for herself for days. The police had to break the door down to find her, after the daughter called them to do a “wellness check”. Mom was taken to the hospital in severe malnutrition. She died soon after from infections and complications of her medical conditions. We expect that daughter may have experienced some guilt, though her efforts did result in rescuing her mother from her self-neglect at the end. Only that daughter could answer the question of whether that felt like enough.
The Takeaways
Many adult children we have met at AgingParents.com, where we consult with families, choose to somehow get involved even when they have a lot of unresolved anger at how their aging parent raised them. It can be looked at as a matter of human dignity to step in and see that the very most basics of safety are undertaken for an impaired, vulnerable aging parent. For some, it is a last chance to heal wounds of the past and create a caring relationship from the ashes of nothingness. For others, taking on care in some form is an attempt to extract apologies from the parent for past misdeeds. The adult child wants to feel vindicated for their past resentment. We hear too, that this does happen.
For anyone who had an abusive, neglectful or otherwise difficult aging parent, what to do when they lose independence and become completely vulnerable is a personal decision. What we observe from here is that taking on some involvement tends to leave those who accept this responsibility with no guilt for failing to do what they saw as the right thing. The choice of what to do comes from one’s personal perspective, values and willingness to do what may be very difficult.
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