What older adults say they want from their children is autonomy (the ability to still make their own decisions) and connection. They appreciate the loving intention behind gestures of assistance, but they often feel ambivalent about receiving that help. And they frequently express annoyance at “helicopter kids” who seem overprotective or actually take over and make decisions for them.
Of course it’s a delicate balance.
Many people caring for an aging parent comment that it feels like a “role reversal.” They have become the parent and their parent is the child. There certainly may be similarities in terms of your parent’s dependence upon you.
You are likely to run into problems, however, if you try to assume a parental role. Even persons with severe memory loss remember years of independence. They do not respond well to being shut out of decisions or told what to do. Like any adult, they want to be respected.
It can be frustrating to see your family member denying problems, making poor choices, and resisting your help. And sometimes your parent’s decisions affect your life. However, unless your loved one has dementia and is truly incompetent to understand the consequences of decisions, it IS their right to make those decisions—including bad ones!
Learning to collaborate
Caring for an aging parent becomes something of a dance. Sometimes you walk together arm in arm. Sometimes you take the lead. Sometimes you follow. You need to be responsive in the moment.
Working as a team
In this article, we offer tips designed to help you work as a team with your parent and evolve together in the eldercare journey. You will always, first and foremost, be their child. For better or worse, along the way you may find yourself taking on other roles as well. The key is to recognize what you can realistically do and when it’s time to call in others to help.
In the case of dementia
Memory loss presents especially painful and difficult situations. Many conditions cause changes in memory. Alzheimer’s, vascular dementia (also called “stroke dementia”), and Parkinson’s are the most common. “Dementia” is a term used to refer to these types of conditions.
It may not be possible to include them in decisions.The best way to help your loved one is to work together as a team. But in the case of dementia, your parent may get to a point where this is not possible. Most forms of dementia get worse over time. At some point your parent will likely cross a threshold where they are no longer capable of logical thinking. They will lose the ability to make rational decisions. As much as you reasonably can, however, try to keep your parent involved in decisions.
If your family member is in the early stages of dementia, now is the time for advance planning.It is important that they choose proxy decision makers. One will be needed for finances and one for healthcare. While your parent still has clear thinking, they should also prepare instructions about healthcare preferences, known as an advance directive.
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Partner-in-care: Supporting your parent to make changes
Have you ever tried to change a habit?
Lifestyle changes such as quitting smoking, losing weight, or getting more exercise can be difficult enough. But then try taking medications with uncomfortable side effects. Or poking yourself for blood sugar tests. Or coordinating special timing of pills, meals, and sleep.
Older adults often face significant changes, such as the need to get help, stop driving, or even move from their home. These changes are fraught with symbolic and functional challenges. Add to it the loss of friends who move or who die, a partner who gets sick or who dies, and it’s easy to see how change can be overwhelming.
Fear of losing control and of losing independence looms large for older adults. They are frequently called upon to alter their lives amidst a cascade of losses. Who can blame them if they do not recognize or acknowledge a problem? It could feel like opening the door to a tidal wave of trouble. Reactions run the gamut from unconscious denial of a problem to outright refusal to discuss it.
If you have ever tried to push your parent to change, you have probably met with resistance. Much as the need for change may be obvious, change is not generally welcome or easy. Out of caring, concern, and frustration, it’s common for adult children to resort to scolding or nagging. Although the intention is good, these reactions rarely do more than strain the relationship. You will always be your parent’s child. Your parent is not likely to accept an authoritative stance on your part.
Instead, experts in behavioral change suggest a collaborative approach, using a technique called “motivational interviewing.” This successful strategy involves becoming a partner in care. The goal is to walk alongside your loved one, working as a team.
As part of the team, you
are positive. Focus on what your parent is ready to do. Build on their strengths.
are humble. Ask permission to get involved. Ask what your family member would find most helpful from you.
detach and empower. Help your parent explore why, how, and what they might choose to change. You may have your list of what is top priority. But in this case, it’s best to let your loved one choose so they feel in charge. The good news is, change is habit forming! One successful change encourages the next.
use your loved one’s own motivation. Once you know what’s important to them, strategize together to emphasize those results.
focus on building confidence. Start with a small step they are confident about achieving. Feeling confident is often the difference between changing and not changing. It’s easier to attempt a little change than a big one.
listen carefully and paraphrase. Develop trust and reduce defensiveness by stating back what you think your loved one has said. Ask if you seem to have understood correctly.
resist the urge to persuade, coerce, argue, or correct. Pushing generally causes people to dig in and shut down.
People naturally feel ambivalent about change. When you help your relative verbalize their priorities, they can explore what change might look like for them. They can still control if/how they will change as they become increasing more confident about their abilities.
Conversations about change usually have two components: Identifying motivations that have meaning for your loved one, and then eventually making a plan with strategies that your relative feels confident about.
Consider the following tips as you talk together about change:
Open-ended questions. Avoid yes/no (closed questions) by using nonjudgmental questions that begin with “what,” “why,” or “how.” This will give you a deeper picture of your relative’s values (what’s important to them) and their concerns about doing things differently. “What would you like about losing weight?” [desired outcome] “Why might you prefer exercising over taking insulin for your diabetes?” [compare pros and cons]. “How did you get started when you first *** [some other change they have successfully completed in life. Could be a move, a promotion, going back to school…]?”
Recognize their strengths. Help them build confidence. “You know your body best.” “You approached that change by taking small steps. That was very wise.”
Repeat back what you hear them saying. This builds empathy and also helps them clarify in themselves what it is they are thinking. “If I understand correctly, you ***. Do I have that right?”
By recapping what you have heard over the course of an entire conversation, you can set the stage for making plans. Don’t make commitments unless they have said they are ready. But you can give them a sense of the key takeaways that they can mull over before you talk again. “So far, it sounds like you are thinking that cutting back on cigarettes might be a good idea. You would enjoy tasting your food more and not having to stand outside to smoke when it’s raining.”
First and foremost, preserve the positives in your relationship. The parent–child connection is unique. You want to keep the lines of communication open. As a child, of course you want your parent to have the best life possible. But no matter the desired improvement, achieving it is not worth jeopardizing what trust and affection you have. Remember, there are others who can work to help your parent make needed change. But there are very few who, at the end of the day, can offer the support you can: That of a family member who has known them for a long time.
As you work together to make changes, keep these concepts in mind:
Start with small steps. Big changes are hard. It’s easier to make a little change, get used to that, and then make another little change.
Identify a range of options. People are more likely to try something they feel confident they can accomplish. When presented with a wide variety of approaches, your family member is more likely to find one that seems easier than the others.
Begin with a temporary arrangement. Contemplating a permanent change can be overwhelming. Committing to a trial period, however, with a reevaluation after a week or month, feels much more manageable. Take one day at a time.
“Relapse” is part of the process. The larger or more difficult the change, the more likely your family member will need to backtrack now and then. It usually requires several attempts before a complete change is in place. Rather than treat a relapse as failure, look at the attempt, no matter how short lived, as a warm-up exercise, as practice. Sure, it’s disappointing. But each attempt offers new insights. Instead of a lapse in willpower, look at it as an opportunity to renew motivation. Reinforce the benefits of change. Identify the barriers or hardships that triggered the reversal. Then make adjustments in strategy to address those hurdles.
What is the first thing you could do to emphasize that you are a partner, a member of your loved one’s team—not a boss?
We all respond emotionally when we get bad news about our health. And when we aren’t feeling well, it’s hard to focus mentally. Add to that the confusing language of medicine. And then the even more confusing healthcare system, and you have a recipe for problems.
Your parent may need assistance gathering information and understanding options. It often helps to have another person involved who is more objective. Plus, that advocate can provide continuity from one healthcare setting to another. You can offer some of this assistance yourself. Or you may want to enlist the help of an Aging Life Care Professional.
An Aging Life Care Professional is a healthcare professional who knows and understands older adults, issues of aging, and the complexities of the eldercare system. They can help you understand the diagnosis and the treatment and how they will affect your family member’s daily life. An Aging Life Care Professional will look at your parent as a whole person and view the impact on the family. They come up with approaches to a problem that take into account mental, emotional, and social needs, as well as the physical and financial demands of the condition.
As you see from the list below, serving as an advocate is a big job. And it’s not easy to do. Your task is even more difficult because it involves a relative. You will have your own emotions to deal with, as well as theirs. In addition, it may be a steep learning curve to get up to speed with the terms and the resources available.
If you and your parent(s) agree that your role is to help them by being their patient advocate, here are some tips to make your job easier:
Talk with the doctor.
Prepare a list ahead of time.Write a concise list of your parent’s symptoms and concerns and bring it to the doctor’s appointment. Note them as bullet points so the doctor can quickly get a picture of the situation.
Ask questions when treatments are proposed.Pros and cons of each therapy proposed? Which does the doctor feel would be best for your relative’s situation? What is involved? How long will it take to know the treatment is working? Any side effects? If the treatment is successful, what will your parent’s life be like afterward? What is the likelihood of success? What are the alternatives? What will happen if the decision is to not seek treatment?
Clarify any unknown terms that are being used.Ask questions if you or the person you care for don’t understand what is being said.
Ask the doctor for any printed information about your parent’s condition.You can take it home to refer to later.
Find out if treatment is a covered expense. Medicare will cover most medically approved treatments. Not experimental treatments, however. Learn ahead of time about the financial impact of the chosen treatment.
Consider a second opinion.Talking to another doctor is especially wise if the proposed treatment is invasive or risky. Check to be sure your family member’s health insurance will cover a second and/or a third opinion.
Explore the services of an Aging Life Care Professional. They can accompany your parent to the appointments. Doctors have only a few minutes per patient, so it’s critical that you have organized your questions in priority order. An Aging Life Care Professional can do this for you. At the appointment, they listen, take notes, and make sure your questions are answered. They can also help you identify and sort through the pros and cons of treatment decisions. When it comes time to implement the treatment, an Aging Life Care Professional can help your parent overcome any obstacles to following the doctor’s recommendations.
Search the Internet. Find the websites of nonprofit or government agencies dedicated to your loved one’s condition. Make sure you check reputable organizations so you know you are getting solid information. Check the “About Us” section of a website to learn about their sources of funding, which might bias the information they present. You can also go to Medline Plus for Older Adults. This is a website sponsored by the National Institutes of Health.
Look for support groups oriented around the diagnosis. Medical providers are the experts in curing or treating a condition. But many of the challenges lie in dealing with the diagnosis on a daily basis. It can be helpful to talk to other people who have lived with the same condition. They can be a source of tips and emotional support for living day to day with difficult symptoms.
Groups for family caregivers can provide needed support for you. It’s immensely helpful to talk with others who may be struggling with the care of a parent or spouse. At the least, you will realize you are not alone!
Assist with decision making. At some point, your loved one will need to make decisions about treatment. The decision is usually based on a combination of factors, including the following:
Personal values and beliefs
Quality of life concerns
Available support
Community resources
Financial considerations
Consider working with an Aging Life Care Professional to help you and your loved one sort through all the issues. These care professionals understand the psychological and medical realities of each family situation. They also know about locally available resources. An objective professional, skilled in family meetings, can ease the tensions associated with a treatment decision. Aging Life Care Professional knows how to identify and clarify the issues, allow each person to be heard, and make a difficult conversation much less painful.
Does your loved one want you to serve as an advocate? If so, what activities would they like you to pursue?
Whether it’s talking about assisted living or suggesting that Dad no longer drive, sometimes we feel forced to discuss sensitive issues. This can pose a real dilemma. On one hand, there could be a safety concern. And it may not be just your loved one’s safety! Poor driving ability could put others at risk as well. On the other hand, you want to retain whatever trust and affection you currently share with your parent. Preserving your relationship is extremely important. You don’t want to treat that lightly.
Many people find it helpful to have professionals bring up sensitive topics. For instance, it’s much easier for an older adult to accept if the doctor says they have to move to memory care, or DMV calls your family member in for a driving test. (In most states you can anonymously inform the Department of Motor Vehicles that you have concerns about a person’s driving.)
Everyone needs to retain their sense of dignity. A child questioning their ability will be met with resistance. Better that your parent directs their anger at a professional than get angry at you. Plus, your loved one will get an objective assessment with a knowledgeable professional, recommendations you can trust.
If you are concerned about an issue, consider discussing it with an Aging Life Care Professional first. These professionals can sit down with you and/or your family member to talk about the issues. Together, they can help you develop a short-term plan and a long-range plan that is safe and workable for everyone.
If you feel a change is urgently needed, then maybe it’s best to call in an appropriate professional—the doctor, a lawyer, or an Aging Life Care Professional. They have experience dealing with these situations and can remain objective. What seems like a crisis to you may in the larger scale of things be an acceptable risk for your elder. Or it may be a true emergency.
How might you bring up a sensitive subject yet still preserve the trust and love between you and your relative? Who else might be able to serve as an advisor?
Coordinator of care: Providing daily help and monitoring
Much of eldercare involves helping with daily life activities. It may be housekeeping, errands, cooking, and laundry. It might also mean paying bills, balancing the checkbook, managing investments. As the person you care for becomes more frail, they may eventually need help with intimate tasks such as bathing, dressing, and toileting (incontinence care).
In times past, extended families lived closer to each other. We also had tight-knit, multigenerational households to help with eldercare issues. Not so anymore. Frequently, adult daughters and sons are working. They may even live thousands of miles away from their aging parents. It’s not possible for one person to keep a standard work schedule and provide all the help that is needed. Nevertheless, that is often what may be asked of you.
Fortunately, there are ways to create a support system for your parents. You may be able to rely on the informal system: Friends, family, perhaps even members of the faith community. There is also a more formal system of professionals who can help. Services run the gamut from transportation and meal delivery, to bill paying and in-home care. Depending on eligibility, some of these services may be free; others may cost money. It is not uncommon for public programs to have a long waiting list for those who are eligible.
Whether you decide to enlist the formal system, the informal system, or a combination of the two, it will take research and then coordination. Making these arrangements may be something you and your loved one can do together. You might also enlist the services of an Aging Life Care™ Professional to determine which ones make the most sense in terms of your family needs and budget.
Don’t expect to have all the answers or to provide an unlimited amount of support. Caring for an older adult is no small task. It can get overwhelming. Family caregivers have a significantly higher rate of depression than do persons who are not caring for a relative.
It is important to reach out and get help. Most people eventually need a formal support system to adequately meet their loved one’s needs. It behooves you to get assistance selecting the best providers. But it doesn’t stop there. You also need to oversee the services to be sure they are delivering the right kind of help. An Aging Life Care Professional has the education, training, and experience to give you the guidance you need. They know the local eldercare providers and which ones deliver reliable, high-quality service.
What services are on your wish list? Who among your friends and family can help? What services might you need from the formal support network?
Proxy decision maker: When your loved one is unable to speak for themselves
What if your grandmother has dementia? Who will pay her bills or handle her finances? What if your father has a major accident and is in a serious coma? Who will make medical decisions for him? Do you know his treatment preferences?
Part of working as a team involves having conversations about your loved one’s wishes. Be sure they have chosen people to carry out those wishes if the time comes when they are unable to do so. The legal right to make decisions for someone else is granted through a document called a “power of attorney.”
The term “power of attorney” often strikes fear in older adults. Many believe it will take away their ability to manage their own affairs. Not true.
Designating a power of attorney is like insurance: Good preparation for the unknowns of the future. Every adult should choose proxy decision makers to help if they become incapacitated. This becomes an especially high priority if your family member is in the early stages of dementia or has a life-limiting condition.
With a power of attorney in place, your parent still stays in control of all their decisions. The power of attorney is invoked only if your family member becomes unable to speak for themself. And as long as your parent is competent to make decisions, they can change the power of attorney at any time.
Much as we don’t like to think of it, most people will be unable to speak in their last days, or even weeks, of life. Planning ahead relieves families of tremendous pressure and guilt. It takes away the uncertainty. It can also go a long way toward preventing arguments during a crisis.
Your parent will need to appoint a proxy decision maker for financial matters and one for medical concerns. Some professionals recommend that these be two separate individuals. The two jobs require very different skills. (Best to confer with an estate-planning attorney to discuss the pros and cons.)
Your loved one may want you to serve as a power of attorney, or not. Be open to their choice either way.
Financial decisions: Durable power of attorney A durable power of attorney document grants an individual the authority to act on another’s financial behalf. This individual becomes the “attorney-in-fact” for the person signing. Many people have an informal understanding that the individual will step in only in an emergency. A more formal arrangement can be made specifying under what conditions the person can start making decisions. Severe dementia or a coma might be listed as triggering events. Learn more in our article about finances and estate planning.
Medical decisions: Healthcare power of attorney
The healthcare power of attorney document shares similarities with the financial power of attorney. It addresses healthcare decisions instead of financial matters. Learn more in our article about choosing a healthcare decision maker.
Has your loved one completed the paperwork to officially name proxy decision makers? It’s vital that they do!
A strained relationship, neglect in the past, or other family dynamics over time may have shaped your need for strong boundaries and emotional distance from your relative. If this is the case for you, then no need to read further in this article.
If on the other hand you have an emotional connection and wish to stay engaged as an emotional-support person, then by all means read on.
The importance of family. Noted researcher on aging Dr. Laura Carstensen discovered that the closer we feel to our mortality, the more we focus on our family relationships. Social circles get smaller and it becomes preferable to spend time with people who matter most. Usually that’s relationships that have been in place for decades. (This holds true not just for older adults, but even younger adults who receive a serious diagnosis.)
As a family caregiver, it’s easy to get so caught up in the logistics of supporting an older relative that we forget the importance of the emotional connection. There just doesn’t seem to be time. Before reading further, check out our article about the emotional changes of aging. It will give you a firm foundation in the issues. Consider the following strategies:
Quality time. Perhaps you go over to Mom’s on Monday, Wednesday, and Friday to run errands, do the laundry, help her bathe, etc. It’s a lot of time overall, but the regularity makes it convenient because you’ve been able to work it into your schedule. For your loved one, however, it may feel like they are an item on your to-do list. (They sort of are, but no one wants to feel like a duty.) To compensate, be sure to punctuate your time with additional visits that are just for fun: Go to a movie, check out garage sales, go to lunch. Pick an activity you will both enjoy and suggest it outside your normal schedule. (This goes for long-distance caregivers also. Be sure to also schedule in some fun during the limited time that you have to visit in person.)
Slowing down. Likely you are still in the workforce. You may be part of the “sandwich generation” raising kids while caring for older parents. Even if you are retired and your kids are grown, your life may run at a speed that is not the same as your relative’s. When you get out of the car and before you knock on the door (or pick up the phone if you are a long-distance caregiver), take three deep breaths. Remember that modern life runs at a not-very-humane pace. This is a time to put yourself in low gear and slow down. Consider turning off your phone notifications or putting it in silent mode so you can be fully present. The world will still be there when you emerge from your visit. Your loved one needs to feel like an emotional priority.
Active listening. While you might have your own ideas about how to fix problems in your loved one’s life, consider instead the gift of listening deeply and waiting for their cue about help or solutions. Most of us just want to be heard, to know we aren’t alone. Rushing in to reassure someone that everything will be okay, or suggesting they look on the bright side, is not really listening. Instead, if your loved one is having a tough time, give them your full attention and encourage them to talk. (“Tell me more about that.”) Allow for silences and provide nonverbal reassurance if they get emotional (holding hands, a hug). No rushing to get past the tough stuff, though. Validate their feelings. Try to paraphrase what you have heard them say and ask if you have it right. Let them correct you if needed. Hold off on problem solving until they start to say things like “I wish I knew what to do.” Even then, resist the temptation to express your solution. Ask them about the solutions they’ve thought of so far. The goal is for them to be completely listened to and to feel like they are still in charge of their own lives as much as they can be. Through active listening, you can help them find their own answers.
The dignity of reciprocity. It’s built into human groups: If someone gives you something, it’s expected that you will give back. Many family caregivers take the long view and support their parents for exactly that reason. As a thank you to your relative for all the time spent raising you. When you are providing care and support, however, it may be very awkward for your loved one to be so much on the receiving end. The gift of parenting was a long time ago. They have decades of being the giver to the younger generation, not the receiver. And socially, people who don’t reciprocate are looked down upon as freeloaders. The person you care for may be embarrassed by how much of your time and energy they require. If they want to do something for you—take you to lunch, make you a sweater, bake a cake—let them. It helps them preserve their dignity and remove the stigma of being a freeloader.
Supporting a sense of purpose. The “Blue Zones” study of centenarians around the world revealed that people over one hundred years old hold in common an emphasis on purpose in life. Each of us has a gift, something we are really good at or something we have contributed that we can feel proud about. It turns out, having a reason to get up in the morning adds to quality of life and quantity of life. Support your loved one in cultivating a sense of purpose. Perhaps it’s a hobby or a passion project. Maybe it’s just acknowledging their expertise or all they have done for a particular group or community. According to Erik Erikson, noted developmental psychologist, the task of the elder is to review their life and identify the meaning of it. Perhaps you can help your relative reflect on achievements or lessons learned. Encourage them to write down some stories or use a memoir template from Writers.com. You could even record an interview with them through StoryCorps.org.
Coping with depression. Unlike sadness, which is often characterized by tears, depression is a sort of detached numbness. It frequently has physical manifestations (problems with sleep, eating, unexplained pain) and includes fatigue and an inability to take action. One’s perception of self and the situation becomes an almost tunnel vision of the negative, no matter how many positives there are. Depression involves a chemical imbalance in the brain that is most often treated with a combination of medication and talk therapy. If your loved one is depressed, active listening and quality time may help. But most of all, they need to see a professional. Encourage them to talk to the doctor or work with a counselor. If they ever mention that they wish they were dead or that they are contemplating suicide, take it seriously! Ask if they have a method in mind or a particular plan or schedule. (You won’t be giving them ideas, but the answers will tell you how urgent the situation is.) Ask them to promise you they won’t do anything for the next twenty-four hours. This will give you time to call the 24/7 Suicide & Crisis Lifeline at 988 to get professional advice. If your relative is open to it, encourage them to call as well. This is not like 911. They won’t immediately send out first responders. They are simply professionals who know the most successful strategies for talking a suicidal individual “away from the ledge,” so to speak. You don’t have to handle this alone.
Caring for an aging parent becomes something of a dance. Sometimes you walk together arm in arm. Sometimes you take the lead. Sometimes you follow. You need to be responsive in the moment.
Much of eldercare involves helping with daily life activities. It may be housekeeping, errands, cooking, and laundry. It might also mean paying bills, balancing the checkbook, managing investments. As the person you care for becomes more frail, they may eventually need help with intimate tasks such as bathing, dressing, and toileting (incontinence care).
