Many family members comment that caring for an aging parent 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 he or she has dementia and is truly incompetent to understand the consequences of decisions, it IS your loved one’s right to make those decisions.
Learning to collaborate
As a result, caring for an aging parent becomes something of a dance. Sometimes you walk arm in arm. Sometimes you take the lead. Sometimes you follow. It’s a delicate balance.
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 elder care 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.
Partner-in-Care: Supporting your parent to make changes
Have you ever tried to change a bad habit? 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 seniors. 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 even to nagging. Although the intention is good, these reactions rarely do more than strain the relationship. You will always be your parent’s child. He or she 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 be a supportive partner-in-care or coach working as a team with your family member.
As part of the team, you
- are positive. Focus on what your parent is ready to do. Build on his or her 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 he or she 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 he or she feels 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 him or her, strategize together to emphasize those results.
- focus on building confidence. Start with a small step he or she is 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, or correct. Pushing generally causes people to shut down.
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 daughter or son, of course you want your parent to have the best life possible. But no matter the expected 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 loving family member.
As you work together to make changes, keep these other strategies 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 will power, 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?
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Health Care Advocate: Collecting information, supporting decisions
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 health care system and you have a recipe for problems.
Your parent may need help gathering information and understanding options. It often helps to have another person involved who is more objective. Plus, they can provide continuity from one health care setting to another. You can offer some of this assistance yourself. Or, you may want to enlist the help of a care manager.
A care manager is a health care professional who knows and understands older adults, issues of aging, and the complexities of the elder care system. He or she can help you understand the diagnosis and the treatment and how these will affect your family member’s daily life. A care manager will look at your parent as a whole person. These professionals work with you as a family unit. They come up with approaches to a problem that address everyone’s mental, emotional, and social needs, as well as the physical 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 those of your parent. 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 decide what to do, 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. What is involved? Is this a curable condition? 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 there is no 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 this home to refer to later.
- 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.
- Engage a care manager to accompany your parent when you are unable to go to the appointment. He or she can listen, take notes, and answer questions afterward. A care manager can also help your parent overcome obstacles to implementing 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. We have assembled a list of credible, national organizations in our article Educating Yourself. You can also go to Medline Plus for Seniors. This is a website sponsored by the National Institutes of Health.
Call and talk to reliable organizations. When you find a website that seems to have good information, give the organization a call.
- Prepare for the call ahead of time so you know what information you wish to gather.
- Be patient. Many nonprofits and government organizations are underfunded and therefore understaffed. It may take time to get the answers you seek.
- Expect that you may get transferred to several different offices.
- Your call may get dropped. When you first start talking with someone, ask for their name and if there is a direct dial number in case you get disconnected.
- Plan on it taking longer than “it should.” You may want to have a book on hand or something to do if you get put on hold.
- If you need to leave a message, follow up with another call in a few days.
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. 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:
- Personal values and beliefs
- Quality of life concerns
- Available support
- Community resources
- Financial considerations
The University of Ottawa has developed an interactive decision-making guide for evaluating the possibilities.
Consider working with a care manager 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. Care managers know 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 he or she like you to pursue?
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Advisor: Bringing up difficult topics
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 the one hand, there could be a safety issue at stake. 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 suggests a driving test than if a child questions a parent’s ability. Everyone needs to retain their sense of dignity. And better that your parent direct their anger at a professional than get angry at you. Plus, your loved one may be able to speak more candidly with an objective professional.
If you are concerned about an issue, consider discussing it with a care manager. These professionals can sit down with you, and 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 want to bring up sensitive topics, we suggest the following:
- Prepare ahead of time. Begin by identifying the problem to yourself. What specifically worries you? You may want to research possible resources and solutions, but don’t get your heart set on any one plan of action.
- Think about your family member’s likely response. Will he or she feel threatened? Hurt? Angry? Fearful? How might you ease the reaction?
- Identify professionals who understand the issues. Frequently, adult children identify a problem that the parents do not see. A professional can provide a valuable third opinion.
- Who should be present? Is this a subject that needs a professional’s perspective? Are there others in the family who should be involved?
- Choose the right time and place to talk. Ideally you want privacy and a calm, unhurried atmosphere.
- Collaboration is key. To the best of your ability, work as a team to find a mutually agreeable solution. Better to retain trust and a positive relationship so the door will stay open for future conversations as other issues arise.
- State the problem as you see it. Express concern from your point of view and give specific examples, such as, “I worry when I’m so far away and you’re alone.” Do what you can to avoid sentences that imply blame; for example, “You insist upon doing …”
- Ask what your family member thinks, and simply listen. At this time, it works best to hold back from voicing your solutions. By listening completely (no interrupting), you build trust and learn more about your parent’s priorities.
- Acknowledge his or her feelings and issues. Mirror back what you’ve heard. Ask if your understanding is accurate. If it isn’t, then ask for clarification. Be as nonjudgmental as you can. It’s not yet time to share your response. You may not agree with your parent, but at least you’ll have a more complete picture of his or her concerns.
- Ask how your parent would like to address the problem. Consider using the motivational interviewing techniques described above for a good partner-in-care. By incorporating your parent’s priorities, you will be more likely to arrive at a genuinely workable solution.
- Share your perspective tactfully. If your family member’s solution does not address all your concerns, this point in the conversation is the time to voice your reservations. Begin by acknowledging the parts of your loved one’s solution that you really like. Then, describe a situation in which you feel that approach may be lacking and ask for help refining the strategy. Emphasize your togetherness as a team. For example, “I like your idea, especially the part about ABC. I’m wondering, though, what if XYZ happened? We’d still have a problem. Any thoughts on how we might address that situation?” Then let your loved one speak. Continue to acknowledge the parts of their modifications that you like (or can at least live with).
- Find your common ground. Look for solutions that will work for both of you. Even if they are only partial solutions, as long as they are safe, start there.
- Agree to give it a trial period. Set a time when you will come back together to reevaluate.
- End on a friendly note. Remember that your relationship is priceless. Trust is hard to earn back. At the end of the conversation, let your loved one know how much you care and how much you appreciate having the discussion. Also keep in mind that these talks take a lot of energy. Keep discussions of this nature short enough to respect the older person’s stamina.
If you feel a change is urgently needed, then maybe it’s best to call in an appropriate professional: the doctor, a lawyer, or a care manager. 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, this 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?
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Coordinator of Care: Finding help and services
In times past, extended families lived closer to each other. We also had tight-knit communities to help with elder care issues. Not so anymore. Frequently, adult daughters and sons are working. They may even live thousands of miles away from their aging parents. With such changes in the family structure, as a society we need to rethink ways to care for our oldest members so everybody’s lives can function smoothly and well.
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 some public programs to have a 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 a care manager to determine which services 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 persons who are not caring for a relative.)
It is important to reach out and get help. A care manager has the education, training, and experience to provide guidance as needs change and difficult decisions have to be made. To learn more about organizing the formal and informal systems of support, go to our article about finding help.
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?
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Proxy Decision Maker: A safety net for legal, health, and financial matters
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 parent’s wishes. Be sure your loved one has chosen people to carry out those wishes if he or she cannot 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 chose proxy decision makers to help should 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 his or her decisions. The power of attorney is invoked only if your family member becomes unable to speak for him- or herself. And, as long as your parent is competent to make decisions, he or she 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. 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. This arrangement requires documentation that the event has occurred. Although it can provide some assurance against abuse, proving the trigger event can also eat up valuable time in an emergency.
- remains inactive until needed. Your loved one can continue to manage his or her money matters.
- ensures that your loved one chooses who will have legal authority. In the absence of a power of attorney, the court may appoint someone of its choosing. The power of attorney enables access to funds. It is important, therefore, that your parent choose someone who is trustworthy, wise, and good with money.
- can be limited or broad. It can authorize the individual to handle a single transaction (for example, sale of a house). Or, it can be structured so the person can manage all legal and financial affairs.
- can be changed or cancelled. Changes are easy to implement, although they should not be made lightly. Changes can result in there being multiple copies and confusion over which is the latest draft. If a change is made, send updates to anyone who had a copy of the original document.
- becomes invalid upon your parent’s death. When your parent dies, authority over financial matters immediately ceases. Your parent’s will or living trust will become the authoritative document. Decision making transfers at that time to the executor or trustee of the estate.
Medical Decisions: The Advance Directive for Healthcare
An advance directive shares similarities with the financial power of attorney document. It addresses health care decisions instead of financial matters. It also enables your parent to provide guidelines for his or her medical treatment. An advance directive will be used only when your parent is unable to speak for him- or herself.
Advance directives typically have two parts:
- The medical power of attorney, which names an individual to make health care decisions.Your parent identifies someone to be their health care “agent” or “proxy.” Often this individual is called the “power of attorney for health care.” The agent has the responsibility to make medical decisions. These decisions are to be based on his or her understanding of your loved one’s wishes. This includes approving or disapproving life-support measures.
- The living will, which provides instructions for health care. Your parent chooses what types of life-sustaining treatments he or she wants or doesn’t want. Typically, this section also covers organ donation.
Advance directives are simple to complete. No attorney is necessary.
- Contact us for an advance directive: 814-333-7000. Although you do not need an attorney to complete an advance directive, you do need to use the form approved by your state.
- Fill out and sign with witnesses. (People who are mentioned in the document may not also be witnesses.)
- Give a copy of the completed directive to the primary physician. The person named as medical power of attorney, as well as family members of your parent’s choosing, should also get a copy. Keep a copy in the car and in the desk or bedside table, too. It’s also a good idea to have a copy on the side of the refrigerator in case of an emergency transport to the hospital. You might consider opening a private account at the U.S. Living Will Registry. Storing a copy online means it is accessible with a password, anytime from anywhere.
- Review the directive periodically with your family member. The person chosen as the health care agent may no longer be available. Or he or she may no longer be the best choice. In addition, changes in your parent’s health might add a new perspective and bring about modifications in his or her instructions.
Have you had this conversation with your loved one? What are the barriers? Who could you ask to help with this?
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In the case of memory loss or dementia...
Memory loss presents especially painful and difficult situations. Many conditions cause changes in memory. Alzheimer’s, stroke, and Parkinson’s are the most common. “Dementia” is a term used to refer to these types of conditions.
If your family member has dementia, it may not be possible to include them in decisions. The best way to help your family member 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 over a threshold where he or she will no longer be capable of logical thinking. He or she will lose the ability to make rational decisions.
The problem is, that threshold is not always obvious. Some people are clearer in the mornings but decline late in the afternoon or evening. Some people may understand what is being discussed “in the moment” but will forget the discussion soon after.
As much as you reasonably can, try to keep your parent involved in decisions. Our article about dementia can help you get a feel for the stages of memory loss.
If your family member is in the early stages, now is the time for advance planning. It is important that he or she choose proxy decision makers as outlined above. One will be needed for finances and one for health care. While your parent still has clear thinking, he or she should also prepare instructions about health care preferences. Contact us for an advance directive.
How capable does your loved one seem in terms of making decisions? Which types of decisions do you think he or she can still make?
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