Chapter 2
The Caregiver’s Challenges
Being a caregiver can be one of the most rewarding experiences you will ever have. Many consider having tended to a vulnerable loved one among their greatest accomplishments. However, many caregivers don’t take into consideration the level of physical, emotional, or financial commitment that role may require. Most have never had to provide care for an aging loved one before and have no experience or knowledge of how they should proceed and what trials they will face.
A major factor affecting how challenging the duty of care will be is whether or not you saw it coming. It’s definitely easier if, over time, you observed your love one’s slowly increasing need for assistance. That lead time allows you to start discussing your role in your loved one’s care with him or her, learning what options are available, putting resources in place, and asking others for help. It’s more likely that your introduction to the role of caregiver will be an unexpected event that alerts you to the fact your loved one needs assistance, such as a holiday visit where you notice that your parents can no longer maintain their home or should not be driving. If there’s been an emergency, there may be limited or no choices at all.
The best mantra you can have when watching over an aging loved one is “Hope for the best, but prepare for the worst.” Both you and your loved one will benefit if you become a strong advocate for yourself as well as for your senior. Recognizing what challenges you may face, determining priorities, investigating resources, and forming a plan are important steps to successful caregiving. Being proactive in planning and decision making, rather than reactive to an emergency, can make all the difference. Let’s examine some of the major concerns you may face when accepting the role as caregiver.
Changing Family Dynamics
The roles and expectations for family members become muddled or change altogether when a loved one needs to rely on others for assistance. Sometimes the changes are minor. Perhaps your mother can no longer drive, but she is still able to manage other activities of daily life such as cooking, cleaning, and handling her finances without help. As of now, she only needs you to provide transportation. In this instance, your roles change very little. However, as she continues to age, begins to struggle more with these activities, and requires additional assistance, the roles start to shift, sometimes dramatically. It’s not only the parent/child relationship that undergoes transformation; other family members can be affected as well.
When Roles Reverse Between Parent and Child
Possibly the most difficult change in the family dynamic is when a parent needs to depend on a child to provide care. Throughout our childhood, our parents are the decision makers and the ones we turn to for support and comfort. It’s hard when the tables turn and they require our assistance, especially if they are resistant to the change or don’t agree with our choices.
Unless your loved one has severe cognitive decline, has been declared incompetent, or has legally given you full control over her affairs and well-being, it can be helpful to understand that you are not there to “parent.” Your responsibility is to help her deal with the changes that come with aging, to acknowledge that help is needed, and to encourage her to accept whatever that help may be.
If you develop an attitude that you are “in charge” now and that your parents will do what you tell them, you are most certainly going to find your relationship altered and problematic. You can avoid this trap and successfully provide guidance, support, and care without damaging your relationship by taking certain steps.
• Focus on communication. Open and honest communication, where both parties can express their feelings and concerns, will protect against the caregiver’s actions becoming too parental.
• Recognize limitations and respect boundaries. Remember that not every parent and child has the type of relationship where either would be comfortable with some aspects of caregiving, like assistance with showering or toileting.
• Assess the situation together. Discuss the signs that help is needed and what help might be available. Be aware that there may be more than one way to provide care, and remember that your loved one has a say in how it’s accomplished.
• Foster your loved one’s independence. Resist the temptation to take over and do everything for your loved one. If it’s safe, allow her to try, even if she is slightly struggling.
Recognizing Siblings and Other Family Members as Caregivers
Often, one family member is designated as caregiver, and the rest of the family is happy to defer to that person. There can be times where more than one person wishes to have a say or participate in the caregiving, though. This can result in hurt feelings or conflict if all parties aren’t considered. Relationships can be damaged or ended over the choices surrounding the care of a mutual loved one. For instance, if your mother and her sister are extremely close and you don’t consult with the aunt over major changes, or if you don’t include your siblings in any decisions and refuse to accept their suggestions, resentment and conflict can develop. You can ensure that other family members feel included and preserve your relationship with them by taking the following steps.
• Designate caregiving roles. If there is more than one person who wants to provide support, determine each person’s role and responsibilities. If one child is a CPA and wants to handle the finances, assign that responsibility to that person. If another family member wants to wash and style her hair each week, welcome the offer of assistance. Or, if a relative, who lives out of state, can’t participate in the day-to-day care but wants to be included, that person could be asked to handle research on issues like finding a more affordable prescription program or the cost of repairs to the home.
• Communicate effectively. If you are the primary caregiver, but there are others who want to be kept abreast of the situation, don’t withhold information because you’re too busy and stressed. You don’t have to take the time to e-mail or call each person separately. Set up groups in your e-mail so you can notify people all at once and ask for help in calling those who don’t use e-mail. Also consider using social media, like creating a private Facebook page just for family and friends, to stay updated and connected.
• Seek mediation, if necessary. If you recognize that there is too much conflict or negative emotion to effectively work together with others, seek professional help. Find a family counselor or mediator and ask for that professional’s guidance or to make the final decisions.
In an ideal situation, all family members will communicate openly, honestly, and respectfully. They will work together to provide care and preserve the relationships in the family. When it becomes clear that the roles or relationships are suffering to a degree that it has become unpleasant or toxic, something needs to be done. It may be a better solution to hire professional caregivers or other outside services so that the family roles and dynamics can return to normal.
Understanding the Legalities of Caregiving
When our loved ones age and we take on more responsibility, we may feel that we have been given the right to make decisions and take action on their behalf. This can be true to a certain extent, but if they are competent and able to make decisions on their own behalf, our authority may be limited. If they are struggling with maintaining the house and it’s falling into disrepair, you have the right to hire a handyman to make repairs. However, if your loved one doesn’t want to pay for the repairs, is uncomfortable having workmen in the house, or simply feels the repairs are unnecessary, you cannot force him or her to do so. You can offer to pay or do the work yourself, but you cannot force the issue. Another example is if your loved one lives in a retirement community and has a massive heart attack. You may know that they do not want to be resuscitated, but unless they drew up the proper legal document stating their wishes and the community has it on file, it must call 911, and the emergency responders will take every measure to save the individual’s life. You cannot step in and assert that your loved one would prefer to die.
There are five basic documents that every senior should have in place and that are necessary tools for future planning. These forms are available online and are generally accepted if notarized and witnessed, but there may be circumstances where an entity such as a bank or hospital may require a form that has been prepared by an attorney. Often, you can ask local law offices basic questions about forms without charge. You can also contact the attorney general’s office to seek advice on whether an online form will suffice or if you should seek an attorney’s services to prepare documents.
• Durable power of attorney. This grants authority to a designated person or agent to act on behalf of a loved one for specific purposes if your senior is physically or mentally incapacitated.
• Mental health care power of attorney. This form appoints someone to make mental health care decisions if a person becomes mentally incapacitated. In some states, only a mental health care power of attorney or a guardian appointed by the court can authorize a person’s admission to a mental health care facility for treatment (including dementia with behavioral problems) without his or her consent.
• Living will (advance directive for health care). A living will is a legal document that is used to make known an individual’s wishes regarding life-prolonging medical treatments. It can also be referred to as an advance directive, a health care directive, or a physician’s directive.
• Health-care power of attorney. A living will expresses your loved one’s medical treatment wishes, but it does not guarantee these wishes will be carried out. The designated health-care power of attorney will be authorized to make important medical decisions about care. If your loved one has a massive stroke and there is no hope for recovery, the living will might indicate if any life-sustaining measures were not desired and the health-care power of attorney would give permission to terminate treatment.
• Last will and testament. A will is a legal document that specifies how your client’s property will be distributed after his death.
Bringing up the subject of legal documents can be uncomfortable or frightening. It may force your loved ones to disclose personal information they don’t wish anyone to know, or it may push them to face their mortality. But it can also bring great relief, knowing that their wishes are specified and the proper documents are in place to allow others to ensure they are carried out.
Managing Your Loved One’s Needs
Being the caregiver of an older person is a complex task. You may find yourself serving in many different roles to meet their needs, not only the expected ones like cook, chauffer, and housekeeper, but also more skilled positions, including nurse, accountant, and counselor, to name a few. Most caregivers receive little or no training to prepare them for the responsibilities they now face. Many find themselves overwhelmed and wonder if there are certain priorities they need to focus on. Fortunately, you don’t have to be an expert in order to be a good caregiver. You just need some guidance in what demands can be expected and how to proceed in managing them.
Aside from the basic caregiving requirements such as assisting someone you love with shopping, cooking, and cleaning, it’s likely your role will evolve into providing advice and assistance with much deeper issues. The following sections will address these complicated matters and help you prepare in dealing with them.
Managing Medical Care
As your loved ones get older, they may need help in managing their medical care. Juggling multiple appointments, understanding diagnoses, taking medications properly, and so many more tasks can become overwhelming. As their caregiver, you may begin to assume more responsibility to ensure their medical care is handled properly. Here are some tips that will help you successfully manage their care.
• Be sensitive to their emotions and feelings. Reassure your loved ones that your involvement is to help them remain as independent as possible while ensuring their medical needs are managed efficiently and accurately.
• Consider a universal medical record. This is a tool that will help organize and manage your loved one’s care. It is a service that collects, stores, and organizes all pertinent medical information, like prescriptions and doctor’s notes, all in one record. With permission, the record can be accessed by health care providers and ensures that all information is up-to-date and that care decisions are not redundant or harmful. Memberships are available through organizations like Pinnacle Care at www.pinnaclecare.com.
• Obtain authorization for the release of information. Have your loved one complete an authorization form so that health care providers and pharmacists can interact with you on his or her behalf.
• Attend as many appointments as possible. If your loved one is receptive, accompany him or her on as many medical appointments as possible. Information being passed down the pipeline can easily be distorted or misunderstood.
Handling Finances
Money is perhaps the most delicate issue of all and the one most likely to cause great stress and a significant shift in relationships. Your loved ones probably taught you all about handling money, and now they are being told they can no longer be responsible for their finances and that they have to trust you to do it for them.
Many families discover their loved ones should no longer manage their own money after finding that they had not paid bills, were overdrawn, had given the money to scam artists, or were taken advantage of in some other way. According to research by Harvard University economist David Laibson and his colleagues, the typical person’s ability to make astute financial decisions peaks at about age 53, then wanes with each passing year; another study found that investing ability takes a steep drop after age 70.
Whether taking over your loved one’s finances needs to happen now or you want to prepare for the possibility down the road, these steps will help you begin the process.
• Plan for the difficult discussion. Make sure you’ve correctly identified areas of concern and have a plan on how you are going to help your loved ones manage their money. Unless they are cognitively impaired, involve them as much as possible so they can have a sense of control and trust in your involvement.
• Document your authority. Locate any documents, such as the durable power of attorney or living will, that give you the legal right to act on behalf of your loved one. You may have to provide copies to financial institutions or businesses to acknowledge your authority. Ask to be put on your loved one’s bank account. If your loved one is not competent, you may have to seek guardianship and become a conservator.
• Locate all financial accounts and documents. Ask your loved ones for a listing of all bank accounts, investments, and creditors. You may have to do some serious investigative work. Scan their tax returns and speak with professionals they’ve worked with, like an accountant, attorney, or financial advisor. Gather up anything that will give you a road map to their finances.
• Start with balancing the checkbook and move on to paying the bills. Chances are your loved ones would be more comfortable turning the finances over to you if you start out slowly. Helping them balance the checkbook is a less threatening place to start. You can then ease into assisting them with paying the monthly bills. Over time, they will likely become comfortable enough to allow you to start managing more of their finances.
• Seek outside help with larger investments. Consider using a financial advisor if your loved ones have a large estate that includes investments and retirement accounts. If they already have a relationship with a professional, ask to be introduced. If not, you may want to hire one.
• Keep track of your actions. Because the elderly are sometimes victimized, it’s in your best interest and theirs to document your actions. Keep copies of all receipts, payments, and statements—anything that can verify the legitimacy of your actions.
Managing the Costs of Care
Ideally, your loved one has bought a long-term care policy and saved for any future care needs, but often this is not the case. Not everyone has prepared financially, and money will be an issue when making decisions.
Your loved one’s needs may cost a significant amount of money, and you may be the one who has to figure out how to pay for them. Many families find that they have to personally supplement these expenses, which can be financially painful for them. In Chapter 6, we will discuss in detail how to pay for the care and resources for those in need of financial assistance. For now, there are some actions you can take to ensure you are keeping expenses under control.
• Enlist volunteers whenever possible. Research local eldercare volunteer services to see if some of the care needs can be met without cost. Many services, like companionship, running errands, and light housekeeping, can be provided free of charge if your loved one meets criteria such as being house bound or living on a limited income.
• Interview multiple resources. Pricing can vary greatly, and even if it’s a small difference, it can add up to greater savings over a long period of time.
• Consider hiring a geriatrics case manager. A geriatrics case manager is a health and human services specialist, such as a social worker, nurse, or gerontologist, who acts as a guide and advocate for those caring for an aging loved one. This professional can assist in a broad range of issues related to your loved one’s well-being and often has extensive knowledge about the costs, quality, and availability of resources in the community.
It is difficult, if not impossible, to estimate how long care may be required. Careful research, planning, and saving can make a difference in whether or not, and for how long, your loved one can afford it. (See Chapter 6.)
Identifying Future Needs
It is not uncommon, and is completely understandable, to focus on whatever needs are demanding attention at a given moment in time. Still, aging and the decline that accompanies it, is ongoing and ever changing. What is needed or works today may be totally different tomorrow. It’s wise to consider what those needs might look like over time and have a plan in place to address them. (See Chapter 4.)
Determining Living Arrangements
When asked, most seniors say that their desire is to remain in their own home, no matter how incapacitated or ill they become. Living in their own home represents control and independence, and they may become distressed at the thought of leaving behind their possessions and memories. However, if their health declines and their care needs exceed a level that is safe or affordable for them to remain at home, you may need to help them make other arrangements. It’s quite possible that the decision as to where they move will fall on your shoulders.
While the goal may be to help your loved one remain at home, it’s wise to research and consider the options that are available if the worst-case scenario comes true. You can explain that while you hope they never have to move, it’s in their best interest to learn more about alternative living arrangements. Research communities, request information packages be mailed to you, and perhaps visit for a tour with your loved one. The community may even invite the two of you to have lunch as a guest. Ask your loved one to help you understand what they would prefer if there were no other choice.
Hopefully the move will never have to be made, but by taking a little time to think about the future, you are ensuring that your loved ones will have a say in their future home, if they are not in a position to be in charge when the time comes.
If the decision is reached that your elders should not live in their home any longer, there are other options available. Your choices will be affected by issues such as if family or friends are willing to help, the availability of care communities in their location, and the level of care needed. Here are some possibilities for consideration.
• Living with family or friends. Many seniors would find living with family or friends to be their first choice, mainly because they are worried about what it would be like to live in a care community. If there are family members or friends willing to have a senior with care needs move in with them, it can be a wonderful solution. Several considerations need to be addressed before you choose this option, though. Do the caregiver and family understand what will be required to provide care, and are they all willing to participate in that care? Are they capable of providing the level of care needed, as in assisting with toileting or managing medications including injections? How severely will having a person with care needs move in to the home disrupt their life and relationships? If you choose to have a loved one live with you, there are resources available to assist you in providing care. Chapter 5 will discuss these in more detail.
• Moving to a care community. Today, there are many differences in the types of communities available to the elderly. Depending on what type of care is needed, if any, your loved one would have several choices to select from. In Chapter 5, we will discuss in detail the different types of communities there are, what benefits they offer, and how to make the right choice as to which one would be a match to your elder’s lifestyle, preferences, and needs.
Helping Your Loved One Cope with Loss and Death
By the time they’ve reached a certain age, the elderly have likely experienced the death of people they have known. They may have been in the military and seen the death of comrades during wartime or have lost their parents and now they are losing friends and spouses. It also would not be unusual for them to be dealing with more than one loss at the same time. Because they are facing their own mortality as well, it is understandable that your loved ones might be struggling with depression and sadness.
The elderly can show their grief in many different ways, including the following:
• greater levels of physical pain
• loss of interest in life and social interests
• increased use or abuse of substances such as alcohol or tobacco
• decrease in personal care, such as not eating and neglecting hygiene
• problems sleeping
You can help your loved ones accept the loss of those they cared for and come to terms with their own death by doing the following things.
• Remember that dealing with loss and grief has no set timetable. It will take as long as it takes.
• Acknowledge their loss. Encourage them to talk about the person who passed and how it affected their life. Let them know they can talk through anything they are feeling and you will just listen if that’s all they want.
• Listen with compassion and respond genuinely. It’s better to say, “I can’t imagine how you must feel,” or “I’m not sure what to say,” rather than hide your feelings or pretend you understand when you don’t.
• Show concern. Be honest if you are concerned about their well-being. Let them know you care and ask how you can be supportive.
• Nurture the habit of living in the moment. When contemplating their own death, the elderly can spend considerable time thinking about the past. Many focus on past regrets. Help them live in the moment by making sure they aren’t alone for extended periods of time, engage in conversations based in the now rather than the past, and plan events or activities for the future. Reinforce how much you enjoy having them in your life and what it is they bring to it, such as wisdom and unconditional love.
• Suggest creating a legacy. Creating a legacy can help your loved one celebrate their life and give them comfort that they won’t be forgotten when they are gone. Recording an oral history, building a photo album, or writing a family recipe book are just a few examples of how this can be done.
Juggling Your Own Needs with Caregiving
Caring for a loved one can be a full-time job, but when you add in other responsibilities, such as nurturing your relationship, raising children, working, and managing a household, it can be overwhelming. Balancing your life can become difficult, and it can drive you crazy.
The most important rule in caregiving is that you must care for yourself first or you will not be able to care for your loved ones. While you can’t stop what is happening to your loved one, there are steps you can take to ensure you remain healthy and balanced.
• Identify and set boundaries. Everyone has different tolerances, expectations, and beliefs. It’s critical to recognize what is benefitting you and what isn’t. For instance, if your loved one uses guilt to control you such as “If you loved me, you wouldn’t go on vacation. What will I do without you?” it would be in your best interest to tell him you’ve made the necessary arrangements to care for him while you are gone and that it’s necessary to take a break so that you are refreshed and able to continue caring for him.
• Pinpoint and reduce stress. Identify what is causing your stress, whether it is taking on too many household chores or agreeing to do things you don’t really want to do—like babysitting your sister’s children on your day off from your job. You don’t have to do it all. Ask for the help you need or say no. And don’t feel that you have to explain yourself.
• Understand you don’t have to be perfect. So what if you haven’t put a home cooked meal on the table all week? You’ve spent the past five days with your mother getting her past a terrible bout of the flu. Too often, stress is self-created. We want to do the best we can and judge ourselves harshly if we aren’t perfect. Give yourself a break. You’re doing the best you can.
• Accept what you can’t change. Sometimes we think we are in control when the situation is completely out of our hands, such as when your brother insists on taking dad out for ice cream when dad is lactose intolerant. Ask yourself if and what you can change to help the situation, and remember you don’t have to take on every battle. Sometimes the best thing you can do for everyone is to just let it go.
• Take action when appropriate. Identify the problem, list possible solutions, select one, and do it. If it doesn’t work, try another solution, and if that still doesn’t work, maybe it’s best to realize the problem can’t be solved right now. You can always try again at another time or move on.
Understanding Caregiver Burnout
If you are not careful about recognizing your capabilities in providing care, setting appropriate boundaries, and committing to taking care of yourself first, you may find that you become a victim of caregiver burnout. This is a state of physical, emotional, and mental exhaustion. Burnout can often result from a dramatic change of attitude and you lose your positive and caring approach to caregiving to one that is negative and uncaring.
Some of the signs of caregiver burnout are the following:
• having less energy than you once had and feeling tired and run down
• catching every bug that’s going around
• losing emotional control and overreacting
• thinking it is hopeless or that you are helpless
• feeling resentful
• neglecting or treating roughly the person for whom you’re providing care
In addition to the tips mentioned in the previous section on managing your own needs, here are several guidelines that can help you avoid caregiver burnout.
• Set realistic goals and know your limits. Accept that you may need help or that you can’t provide certain levels of care yourself.
Give yourself credit! You are doing one of the most difficult and important jobs there are. Everyone around you is going to have a suggestion of what you should be doing or how you can do it better. When that happens, ask yourself whether they would be willing to step in and take over. Chances are, the answer is no. You may not do everything perfectly, but you’re there, and you’re trying. In the long run, that’s what counts.
• Be willing to relinquish control. Allow others to help, even if you don’t feel they are doing it correctly.
• Take advantage of respite care services. Respite care provides a temporary break for caregivers. It can be provided in home or as a short-term stay in a nursing home or assisted living facility.