There are simply no other affordable options for most families. We don’t get to set life’s clock. We don’t know if or when we may need help. But looking at what most people need, we can conclude that our aging parents will likely need care in some form before the end of their lives.
You need to be ready for this reality. You should discuss, as a family, who would and could help their aging parents or other loved ones when help is needed. The history of our country included caring for our own at home as they aged. This was at a time when families often lived in multi-generation households. Now, families may be scattered across the country or across the world. The question of who is willing and able to care for an aging parent who can’t manage alone must be addressed.
Caring for an aging loved one at home is a unique challenge, particularly when the elder must move to be with family, or a family member must move in with an aging parent or grandparent. Enormous adjustments must be made. Some families make an effort to share the responsibility, while others unfairly expect that a daughter will do the job just because she is the daughter. Others simply ignore a parent’s care needs, leaving the burden of doing the work on the sibling who lives closest geographically.
There is no single solution to the question of how to best care for an aging parent who needs help and cannot be alone any longer. There are, however, some basic safeguards every family should take to avoid nasty conflicts over this issue. Family fights about caring for an aging parent can spin out of control, end up in court, or continue for years—even after a parent passes away.
Discuss among all family members, near and far, that a plan needs to be in place for possible caregiving if a parent needs it. As a personal example, a member of my family is a stroke victim, and he needs to be in a care facility. He has no money, and his income is Social Security. When he needed to move out of a nursing home, the family had to come together to make a decision. Where was he going to go? My family has always struggled to have healthy communication, and some members tend to clash. It is often hard to work together in harmony, so coming together in any way was difficult.
There were arguments over whether our family member could live in his apartment alone after his stroke.
There were disagreements over how he would afford assisted living if it turned out to be the best option.
In spite of all the conflict, the family agreed to share the cost of assisted living for him, so he could have a dignified existence in an apartment with the supervision he needed. We formed a plan, and he moved in and is doing very well to this day. Even in families that do not get along, like mine, it is possible to form plans and make agreements.
If your loved one is in declining health, the time to start planning is not after a crisis—it is right now. The logistics of care should be talked over. The amount of time a person puts into the effort of caregiving tends to increase as the elder grows older, and the change needs to be discussed. What is fair? How can the family equalize the burden? What can those who live far away do to contribute? How much can they visit? What can the aging parent do for the caregiving family members? Provide a place to live? Make payments? Give a larger share of any inheritance? These topics should not be avoided.
Some of the ugliest fights in families arise from failure to consider the value of an adult child’s service to the elder who needs care. As you can see from this chapter, the cost of having an outside person or facility provide care is very expensive. When family members step in and do this work, it has a dollar value, whether the elder can actually afford to pay it or not. The value is a source of contention, as some family members fail to recognize the value or discount it. The person doing the caregiving, however, knows that doing so requires more than love for the elder. It often also requires financial sacrifice. Caregiving adult children may have to quit their jobs to take care of an aging parent. They may lose benefits from work and sacrifice contributions to their own retirement plan. Taking an aging parent in causes a ripple effect and strain on other family members in the household.
When there are siblings who are not providing any physical care, and the bulk of responsibility falls on one sibling, this is a recipe for resentment and family conflict, if not warfare. A good way to prevent this is by the use of a caregiver contract.
The contract is suitable when there is any asset available to compensate the family caregiver for the sacrifice and labor involved in caregiving. Usually that means the elder’s home or personal property of value. A lawyer who is familiar with these issues can draw up such a contract for the family and describe in it how there is something of value to be given to the primary caregiver in exchange for the work of caregiving.
It does not have to be elaborate to be helpful. Basically, the person doing the primary caregiving work gets something in return for doing so. The other family members sign on and make this agreement official. For example, after the elder passes away, the primary caregiver might inherit more than the others or get the family home or a larger share of any other asset available. The terms depend on what the elder who needs care has to give, as well as what the caregiver and the rest of the family find acceptable. With the help of a lawyer who may be able to remain more neutral than the family members involved, the family can protect itself from deep-seated resentments that can fester for years and destroy relationships.
This is one device that can work. Other families are able to work out less formal agreements and do well enough. But the danger of doing nothing can easily lead to a great deal of anger and damage to the family.
If you have an aging loved one, consider that some person in the family will have to take on responsibility that could be disproportionate to what others do. Aim for fairness. Recognize that caregiving for anyone is work. The more complex the diagnoses the elder has, the more work the caregiver has to do. An elder with Alzheimer’s disease, for example, can become a 24/7 job, and there is no way to keep the elder safe without considerable vigilance. Consider also that full-time family caregivers often develop health problems of their own. Their sacrifice must be recognized.
Rachel was named as the agent on the DPOA and advance healthcare directives for three elderly relatives. She had no siblings and took on the task willingly, but with some fear that it might be too much. Eventually all three of her elders were placed in an assisted living facility. She found that to be convenient when she visited, but, as time went on, their needs increased. She was taking one or the other of them in a wheelchair to the doctor every week, and, because of incontinence, she was doing four loads of laundry each day. The assisted living facility only provided laundry service once a week. She came to me asking for some advice about what to do. We made an appointment, but she was not able to keep it. She was hospitalized with a heart attack.
Rachel had to rely on a geriatric care manager and another distant relative while she recuperated. I advised her to keep using the care manager to take some of the burden off herself, which worked. It had never dawned on her that the relentless stress of her caregiver responsibilities was ruining her own health. After the sobering event of her hospitalization, she began to appreciate herself more. Caregiver stress is a constant for many, as it was for Rachel. This is a factor that should be figured into the cost of care when your family considers a plan for taking care of your aging loved ones.
Families Who Share the Work of Caregiving
Different cultures in our society view the issue of aging parents differently. Asian families, Latino families, and others may generally consider it their own responsibility to care for an aging loved one themselves, rather than expecting to have their loved one go to a costly care facility. I met one Filipino family with two aging and impaired parents who needed a lot of help at home. They had several daughters, who took turns leaving everything to come and take care of their parents. One flew in from the Philippines, leaving her job, her husband, and her children to relieve her other sister, who had quit her own job for two months to care for these parents. This arrangement worked for them, since their parents had low income and the daughters considered it an expectation that they would need to do this at some time in their lives.
Another large family had a grandmother in her nineties who could not manage alone. They took turns moving the grandmother around from one relative to another, each taking her in for a period of months, so that no one had to handle the responsibility for an unspecified amount of time.
Another family I met had four generations under the same roof. All took some responsibility caring for their aging grandmother or great-grandmother. This seemed to work well also. Every family is different, and cultural expectations have a strong influence on how things are worked out. None of these families had a lot of money to spare or spend on paid caregivers, at least not full time. All of them had to work together to help each other with the responsibilities involved. They talked it over and decided who would and could do what. That is more ideal than many people might find in their own families. The communication about how to help care for aging parents who do not have money is a critical piece here and essential if caregiving is something aging parents can’t afford to pay for themselves.
Adult Children Who Support Their Parents
I have also met plenty of adult children who support their aging parents financially, almost completely or as a supplement to a parent’s modest income. If the adult children are doing well financially and can afford the rather steep cost of helping and purchasing caregiving for their parents, they generously offer to do so. There are often conflicts about this arrangement, however, as siblings rarely all have the same financial capability. One who has financial success may resent being burdened with paying all or most of the cost to support an aging relative, while the other sibling or siblings do relatively little.
I encourage discussion about this to head off family conflicts about the disproportionate burden. If one can provide financial support, perhaps another can do other chores, such as managing medication, trips to the doctor, or household maintenance. The worst approach is to simply ignore the reality that a low-income parent needs help and that someone has to help. Resentment becomes toxic as the family fails to openly discuss what each person needs, wants, and is capable of doing. If you see yourself in this situation of potential resentment about an aging parent’s support for any reason, be the leader and bring it up with your siblings or other relatives—talk it out. It can make a great deal of difference in how things are handled when the time comes that help is needed.
A Legal Note for Caregivers
If you must take time off from work to take care of an aging family member, the federal government ensures that, under certain circumstances, some employees may take leave from their jobs without having to lose their employment. The law that provides this is called the Family and Medical Leave Act (FMLA).1 It is administered through the US Department of Labor.
The law provides that certain employees can take up to twelve weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave. FMLA applies to all public agencies, all public and private elementary and secondary schools, and companies with fifty or more employees. You have to be with the employer at least twelve months and have worked at least 1,250 hours over the past twelve months to become eligible to take this leave. You must also work at a location where the company employs fifty or more employees within seventy-five miles.
One of my clients suddenly had to care for her mother when her father went into the hospital. She had been with her company for several years, and it was a large employer, so she met the requirements. At my suggestion, she went to the Human Resources department at her company and asked for the FMLA application. She filled it out, giving the reasons for her request for leave time. Her father’s doctor filled out a form verifying that he had a serious medical condition. She also had to provide her mother’s diagnosis, which was also a serious medical condition. She got her leave, and her job was protected for the three months she spent helping both of them. Leave was unpaid, but at least she had a job to go back to when things settled down with her parents.
Many parents are without the means to provide for themselves, since they often live longer than they expected to live, particularly if they are infirm in any way. The work of caregiving may fall on their children if the parents can’t afford the costs of living or the need for paid caregivers.
If your parents have low income, you may need to provide at least some of their care yourself, assuming it is needed at some point. If you can coordinate with your family to share the work of caregiving among relatives, you are in the best situation you can create.
Some adult children plan ahead to take in an aging parent and accommodate the need for space, helping with daily care and monitoring of their loved one, and they are able to make it work. Others may move the aging person from place to place so that all siblings share the tasks involved at different locations. The elder is the only one moving in those instances. Others have multiple generations all under one roof with various family members each doing part of the care. Others may move into the aging parent’s home and give the care there. Since every family is different, and personalities do not always harmonize as we wish they would, each family must figure out the best path forward.
Above all, aim for fairness so that no one is left with too much responsibility when others can also help out.
It can really help to discuss what might happen in the future when your parents are still independent and competent. It is never too early. They probably have preferences. Honor them when you can. Ask them what they would like to do if they needed help and there was not enough money available to hire helpers. Then, plan accordingly, taking every prudent step you can to ensure that you keep your loved ones safe in their declining years.
This article is an excerpt from Carolyn Rosenblatt’s The Family Guide to Aging Parents.
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